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BLOG 17: 30th MAY 2012 HERE WE GO...

May. 30th, 2012 | 03:15 pm
mood: accomplished accomplished

It’s been well over a year since I last updated my BLOG. I decided to leave a long gap so that when the time came for when I was able to fill you all in, the content would be full with tried and tested means.

There is honestly so so much to write about and I don‘t really know where to start if I‘m honest.

As usual, these updates are not going to be short, be warned. I am not writing these medical blogs to be basic and un-detailed. That was not my intention initially so I am not going to stop now.

For this particular BLOG I will start off with statistics, logistics and info. I think it’s a good place to start because once all these facts and figures are out the way I can start explaining what a rollercoaster of a year it has been and oh my.. What a year it has been!
But for now we have a whole Summer ahead of us, so here we go.

Current Status

Total Number of Hospital Consultations: 178
Total Number of Procedures/Ops: Approx 38 (not including blood tests)
Some of which were:

*2 thigh muscle biopsies
*1 armpit muscle biopsy and one skin sample from the underarm
*1 forearm puncture muscle biopsy
* 2 full body EMG’s (electromyogram where needles are inserted into muscles to test if electro waves are reaching the muscles and then electric shocks are given)
*Numerous MRI’s
*Bone DEXA scan
*Numerous CT scans
*Numerous Ultra Sounds
*Many many MANY Xrays
*Biomechanical tests
*48hr Heart Monitor
*Blood Gas

Departments and Consultants I am currently under and will be seeing this year

*Hypermobility Specialist: Dr Kazkaz at HMS Rheumatology Clinic UCLH
*Neurologists: Dr Chris Turner/Dr Hanna and Dr Ros Quinlivan at
National Hospital for Neurology and Neurosurgery (NHNN)
*HMS Podiatry Specialist: (name unknown) at UCLH
*Autonomic Specialist: (name unknown) at UCLH
*Gastrointerologist HMS Specialist: Dr N Zarate-Lopez at UCLH
*Pain Consultant: Dr Paul Nandi at NHNN Pain Clinic
*Pain Physiotherapists: Diarmuid and Rebecca at NHNN Pain Clinic
*Pain Team CBT Therapist: Helen at NHNN Pain Clinic
*Pain Psychologist: Kelly at NHNN Pain Clinic

Current Diagnosis and Issues:

*Ehlers-Danlos Syndrome Type 3 (also called BJHS/HMS)
* Cervical and Lumbar Hyper-Lordosis
*Dysautonomia (autonomic dysfunction)
*IBS (irritable bowel syndrome)
*Re-occurring Torticollis (neck spasms)
*Post Viral Chronic Fatigue Syndrome/ME
*Mild Hypertension (blood pressure)
*Upper Pole Renal Scarring (scarred kidneys)
*Limited Dorsal Flexion from frequent injuries (ankles) with hard bone blockage
*Misalignment of the Spine with secondary changes to the gait.
*Hinging around L3/L4 in extension
*Hip abduction which is 60 degrees
*Over extensions, subluxations and dislocations of the wrists, elbows, knees, fingers, toes, back,neck, ankles, shoulders and hip.
*Poor Proprioception
* Myopathy (muscle disease) still being investigated

Current Blood Diagnosis:
*Thalassaemia Trace
*Mild Hypochromasia
The previous four are to do with raised blood cell counts.

Current prescribed medications and treatments

*50mg Amitriptyline at night (helps with sleep and muscle pain/aches)
*800mg Gabapentin three times a day (stops muscle twitches)
*100mg Tramadol as needed (super strong pain killer)
*500mg Co-codamol as needed (pain killer)
*Naproxen (anti-inflammatory) as needed
*5mg Diazepam (muscle relaxant) as needed
*Dianette (for acne, period pain relief and cycle regulating)
*Practicing of the ‘PACING’ physic technique

Over the counter medications/treatments/pain aids

*Glucosomine (I don’t really notice much improvement but I still take them) 0/10 effectiveness?

*Magnesium (Again I don’t notice any improvement) 0/10 effectiveness?

*A-Z Vitamin and Mineral Tablets (1 a day) uknown effectiveness

*Tumeric caps (supposed to help muscles and joints but no difference..)

*Ibulieve Gel (topical pain gel treatment) Sometimes this does help! 6/10 effectiveness
Tiger Balm Can help sometimes but only for like 30mins 4/10 effectiveness

*Montagne De Jeunesse Tired Leg Gel Helps a little but only for like 15mins! (2/10)

*Microwaveble Wheat Bags Good for aches and pains in the Winter. 5/10 effectiveness

*Ice Gel Packs Great to stop inflammation and cool you down 5/10 effectiveness

*USB heated finger gloves for joint aches Helps me a lot when I’m typing or writing and my finger joints get achy or painy especially in Winter and cold days. 6/10 effectiveness

*USB neck massager Nice for minor relief and relaxation 3/10 effectiveness

*Neck, Back and Shoulder Shiatsu Heated Massage Chair This can be a GOD SEND at times but it really depends which type of pains are presenting and from which conditions. It gets complicated for me but overall the relief it gives is very good and relief can last for sometimes for up to a whole afternoon or evening! 7/10 effectiveness

Past Treatments with effectiveness grades

*Prednisolone Steroids (made me gain 3 ½ stone, my hair was falling out and bad side effects) 3/10 effectiveness. WAS NOT WORTH THE SIDE-EFFECTS!

*Another steroid which I cannot recall

*Acute Physiotherapy at UCLH 5/10effectiveness.

*Specialist Physiotherapy at NHNN and Manipulative Therapy 7/10 effectiveness

*Hydrotherapy at UCLH (was very helpful but the drying off and changing clothes made it double more tiring. 7/10 for effectiveness

*Lidocaine and Pain Killer IV infusions 4/10 effectiveness as the relief was very short lived.

*Ketamine Infusions 5/10 effectiveness, short lived relief and gave me strange numbness.

*PACING Technique 8/10 effectiveness. Once mastered and consistently practiced it does make a good impact of way of life and pain prevention. You do get relapses still so it isn’t a cure but more a preventative pain therapy.

*CBT (cognitive Behaviour Technique) Interesting and helpful way to notice your negative thought patterns and fearful thoughts. 7/10 effectiveness if you keep up with it

*Counselling This wasn’t done at the hospital, I was referred by my GP to have this. It wasn’t THAT helpful to me as I have people to talk to if I need. I didn’t really benefit. 3/10 effectiveness (that doesn’t mean to say that it would not help others.)

*Acupuncture Again this wasn’t done at the hospital and for me this treatment was agonising and I had intense pain for days after each session. DID NOT HELP ME AT ALL. 0/10 effectiveness. (However, again, many people benefit from this so do not go by my experience)

*Massage Not done at the hospitals. I only go for a neck, shoulder and back massage when I suffer from intense spasms. I find it painful but the short-term relief of the spasm is noticeable for up to 2 days. 7/10 effectiveness

For me the pain from this treatment was 9/10 and the effectiveness was 2/10.

So there you have it, I guess you could say that’s the boring stuff out of the way but it may all be boring but it is important stuff and I hope somewhere in there a piece of info has helped or given you food for thought on what you may be experiencing.

It has been a very VERY busy year, i've lost friends, gained friends, broken up from an 8 year relationship, moved home and been on a trip of a lifetime and so after writing all of this, I don’t know how I have managed to keep some kind of a life flowing throughout it all, but I did and it was one hell of a rollercoaster..

The next installation of the blog will be called, ‘Please embark on the Rollercoaster Miss Michael..’

BLOG 16: Appt 111. The 4th Biopsy..

May. 19th, 2011 | 09:54 pm
location: lounge
mood: cranky cranky

Blog 16
Hospital: National Hospital For Neurology Queen Square, London
Specialist Nurse:Georgie
Clinic: Specialist Neurology
Treatment: Puncture Biopsy (Biopsy n.o 4)

Ok, So I was required to fast 6-7hrs before the procedure.I woke up at 7am to eat because I KNOW that by 1.30pm I would have been very hungry. I was SOOOOO right!

When I arrived the Specialist Nurse 'Georgie' spoke to me about the puncture biopsy and asked me where I would prefer to have it done. I chose my right forearm because that's where the muscles tend to inflame most, other than my neck. She injected the anaestetic into the area. It didn't hurt AT ALL unlike the previous anaestetic injections I have endured. No stinging, nothing. I did warn her that it would be a possibility the anaestetic may not take effect due to my HMS (Hypermobility Syndrome) as it is known that sufferers of this condition seem to be almost immune to 'normal' doses of local anaestetic. She said we'l see how you go in 20mins. In the meantime I had to go off and have blood tests done (they took 9 vials of my blood this time.. NINE!!!! What on Earth?!) and also a urine sample. Nice.

20 minutes later I arrived back to 'Georgie' to begin the procedure even though I still couldn't feel the anaestetic working. I sat down and ...*alarms sound*, "Evacuate the building please, Everyone Evacuate the building" Yup, the fire alarms were set off and we all had to exit the building and stand outside for 20 minutes. Needless to say even a 'normal' persons anaestetic would have worn off by now. Georgie came up to me to see how I was doing and she poked my arm because I told her I could still feel everything. She said that she'l prick me with some needles when we get back inside and if I can still feel it she would give me another injection. Fire engines turn up, a police van and then we get the all-clear to re-enter the building. May I just add that I was actually very worried, maybe even scared because this was the day after London recieved an official bomb threat!!

Back in Georgie's consultation room and after a few needle pricks (which I felt) another injection was administered, this time a couple of skin layers up. I was fascinated, even though over the years I have become squeemish, I feel compelled to watch everything that is done to me. Gory or not. *PLEASE NOTE THE FOLLOWING FEW PARAGRAPHS ARE GORY*
The skin injection formed a gross looking white bubble which looked like a giant boil filled with white puss!! CHARMING I KNOW!
She then patted it about with a cotton wool ball and spread it and then 5 minutes later prepped herself and I for the actual biopsy. She got out what I can only describe as a metal straw thing (like a drinking straw) with a button on top. She then clicked it and it punctured through about an inch or so of the skin layers which is then, as it is pulled out sucking the skin up the through the straw!
BEING ME though, it didn't go smoothly. When you have the condition Hypermobility Syndrome it is known that your skin is quite stretchy. Well it turns out that mine is uber stretchy! There was one bit of skin left attached to my arm and it wouldn't come off. She was literally moving it about and it was like watching as tring of chewing gum being stretched about. It sounds awful but I couldn't feel anything and in a way it was kind of amusing!! She finally managed to cut it off with a blade thing and she then put it into the test tube to go to the first lab at Great Ormand Street specialist labs. It will then be sent off to muscle specialist labs in Sheffield. I have to wait 4 months for the results! :(

No stitches are required for this, although there is an excessive amount of blood (which required pressure being applied for quite a long time. She put Iodine around my arm because I had blood everywhere!!! Then she put a plaster type thing with a healing coating onto the wound and then wrapped my arm in a bandage. ALL DONE.

Night of Biopsy..
Can't Sleep.
Keeping turning onto my arm and then OW.
No sleep...

Day after biopsy..

2 Days after biopsy..
NERVOUS..Time to change dressings..

Dressing change:
Bandage off, be brave..peel the plaster off..GO ON YOU CAN DO IT.. NO I CAN'T.. YOU HAVE TO..Ok.. :(
*Peels it off* Middle of plaster stuck INTO the hole. Not pleasant. Some blood but not too bad. Quick put dressing back on and cover with bandage. *VOMS*
Painkiller time

Couple of hours after dressing change, boyfriend hits the centre of the biopsy site by accident. OW.. DIE NOW BOYFRIEND!


Ok Ok...boyfriend forgiven :)

Below are pics of the Biopsy.

BLOG 15: Appt 110. ''I promise we don't ENJOY taking chunks out of you, honestly.."

May. 19th, 2011 | 09:12 pm
location: lounge
mood: irritated irritated

Blog Entry:no.15
Hospital: National Hospital For Neurology Queen Square, London
Consultant:Dr Turner
Clinic: Neurology

Well, I waited 7 months for this appointment and it lasted about 8 minutes!
He asked how I was, if there were any progressions, any relapses, any changes and how my IV treatments were going. I told him how things had become alot worse, new symptoms etc.
He went over my previous biopsy results and decided after a year and a half to look further into some findings which weren't even mentioned to me previously!

Plan: ANOTHER biopsy to test for lipids and metabolic myopathies (muscle diseases) and to repat more blood tests in between Iv treatments.
Next appointment to be in 6 months in time for biopsy results to come through.

It's a plan..

Dr Turner then followed this by joking, " Honestly, we don't enjoy taking chunks out of you and sending them all over country!"

Ha ha ha... YEAH RIGHT Dr Turner! I bet all the labs know me on first name basis and hold market stalls with my body parts and blood!!!

BLOG 14: Appt number 109! IV treatment 2

May. 19th, 2011 | 08:47 pm
location: lounge
mood: discontent discontent

Hospital: National Hospital For Neurology Queen Square, London
Consultant/Anaesetist:Dr Smart (usually Dr Nandi)
Clinic: Pain Management
Treatment:2nd IV Treatment(Kettermine IV Infusion instead of Lidocaine)

The morning arrived that I had been nervous about for 4 months. This treatment is supposed to be every 3 months but it was postponed for a month which I wasn't happy about but ho hum!

I was so very disappointed that the last IV treatment hadn't been successful and I had pinned too many hopes on this next infusion, even though I knew I shouldn't have.

The nurse team were the same as last time which was comforting and they even remembered me which I thought was lovely.

I was taken to my bed (the same one as before) and prepped the same way, stats all taken, blood pressure monitor going off every 3 minutes which is REALLY annoying but necessary.
Dr Smart did his rounds and asked how the previous Lidocaine infusion results had panned out, I explained that I had some numb sensations for brief moments but no constant numbness for pain relief. He then explained that they need to try another anaestetic that reaches different nerve receptors and this time it would be 'Kettermine'. I then queried if this was the anaestetic used on Horses and he confirmed it was! I was a little uneasy about having such a strong drug put INSIDE my veins adn bloodstream, it's just not natural having all these things put into our bodies. I reluctantly agreed because I am desperate to find some pain relief, I have accepted that there are no cures for ANY of my conditions so all I ask for is some relief from all the pains and aches.
In went the IV drip, Dr Smart says "the effects from this are quite unpleasant, you will feel highly drunk or drugged, if it becomes too much tell us and we will slow down the drip feed or stop it." This wasn't really a problem for me, feeling drunk isn't that bad is it?! Needless to say I did feel floaty and weird but again because of the 'HMS' (Hypermobility Syndrome) the anaestetic STILL wasn't very effective. I want to do research into why people with 'HMS' have issues with Anaestetic, I have always needed double or triple doses at the dentist or before ops so at least now I know why. Anyway, the Infusion DID seem to give me some pain relief in my neck. I felt NO pain AT ALL in my neck which NEVER happens, it's one of the areas of my body which is never relieved one tiny bit. It actually made me teary because my neck is such a nuisance and has such a loud presence in my life, so to have it gone even for a while,was wonderful (NB: after my 1st Lidocaine Infusion I had 15mins of pain relief in my neck.
I had a few issues with my blood pressure going up and down during the infusion and my heart rate was all over the place aswell, mainly too slow so they set the blood pressure monitors to every 2 minutes and I had an urse sitting infront of me the whole time watching me basically be 'high'. HAHAHAHA!

Skip on 2hours, I still had no pain in my neck but the rest of my body was completely the same :( so so so disappointed I cannot even explain to you. It's a sinking feeling in the pit of your stomach and a tug right within your heart.

4hours later, the neck pains crept back in. GUTTED. DISAPPOINTED. DEVASTATED. Even HORSE anaestetic can't help me.

2 months later, I'm watching Eastenders and the top left of my skull went cold, almost a numbness, slightly tingley but mainly it just felt cold.
4 seconds it lasted. The WEIRDEST sensation I have EVER felt. It scared me. I had never had a symptom like this before and I didn't know what it meant. Half an hour later I realised my right foot was numb. I couldn't feel a thing. I rubbed it, shook it about, got my circulation going but ZILCH. I tapped it and the best way to describe it when you have had an anaestetic injection and its only JUST wearing off enough for you to kind of feel somethings touching you, but if you were to do a pin prick you wouldn't feel it... that's how it felt. (This lasted about 3 weeks).
The day after I went shopping with my friend and on the way there I began to get constant super-speed twitches in my left thigh. They were like triple the speed of my usual twitches and It was so uncomfortable. They didn't hurt, just really a feeling of discomfort and pardon my expression but I was GROSSED OUT! It continued CONSTANTLY and in the evening I began to get them in my left upper arm. By now I was extrememly concerned so contacted my neurologist first thing the next morning.
He upped my twitches meds 'Gabapentin' and told me to double the dosages every 2 weeks. He didn't seem concerned and felt that it was a delayed effect of the IV treatment. I rang back because I still didn't feel re-assured so Dr Turner (my Neurologist) had me speak with his specialist Nurse 'Georgie' (who is lovely by the way) and she explained to me that the numbing effects from the Infusion can take up to 3 months to affect an area or hopefully even the whole body. Unfortunately for me, it was just my foot and my pinky and ring finger that was numb! WHAT GOOD IS THAT TO ME?!!!!!!
Thankfully though, the med increases worked. No more freaky twitches but still pain as usual.
As a result of this the team have decided I should go for a review with my Pain Consultant 'Dr Nandi' to see if I would like to continue trying the IV infusions. I am still undecided..

Here is a pic of my 4 day dossett box surrounded by my extra daily meds and inhalers. Also a pic of how my bin looks after preparing my dossett for 4 days..

BLOG 13: Long time overdue UPDATE.. PHYSIO

May. 19th, 2011 | 08:03 pm
location: lounge
mood: cranky cranky

Hospital: National Hospital For Neurology Queen Square, London
Clinic: Physio review
Consultant: Darmuid

Wow, my 108th appointment.(my last 6 appointments were at a Pain Management course in a gym. We learnt all about how pain signals work and how the body reacts to different pains and impacts and starter exercises and stretches..VERY interesting and I learnt alot. Any questions please ask!)

I never feel nervous about going to see Darmuid at the physio clinic, he is very relaxed and laid-back. He isn't formal like the usual consultants I see. He is also a psychologist aswell so that could be his way of practice? Anyway, the main point of this appointment was to see if I benefited from the Pain course. We discussed what I took from it and if I had been continuing any of the stretches or exercises. I had been doing the stretches but if I was to be honest I had to confess I hadn't done any exercises. I have been and am still worried about doing them because I have been there and done that and I know the painful and unhelpful consequences.

We also discussed further treatment and courses. We agreed that I will be attending a specialist 'HMS' (Hypermobility Syndrome)group a few times a week for about 6hrs a day and then arouns September I will attend a Chronic Pain clinic for a course. I know it's not going to be easy, especially as the hospital is far from me BUT I will do anything if it means I can learn more about my conditions and ways to help myself.

The subject of 'depression' came up, (I usually try to dodge it because up until around 3 months ago I didn't think I was REALLY depressed, I thought I just got down every now and then but it soon became clear that the ways in which I was dealing with and reacting to things was not that of an UN-depressed person.) Darmuid asked how I was doing and I said, ''Ok'', At this time I didn't think I was depressed but now I look back at what followed my ''Ok'' I can see that I was just in denial. I started to waffle on about how I have been campaigning to 'Save the Tree's and 'Save the Planet' and I went into detail about my online support group on facebook for people with illnesses. I think I wanted him to see and think that I was being pro-active and not being selfish and living in a self-absorbed pain bubble, which I think sometimes I was.

Anyway, he said to me that he thought that helping people was a very positive thing and that the online support group was a wonderful idea and he would be passing it on to his other patients.
This did make me feel happy and he made me see that by helping others I am helping myself too.

The plan is now to not consult until after my series of IV treatments because it could get too complicated.

Next appointment will be my 109th and it will be my IV infusion. Let's see if it works this time..

Blog 12: 12 Days Post Treatment..

Nov. 24th, 2010 | 08:12 pm
location: lounge
mood: crappy crappy


12 Days Post Treatment and it's been a bit confusing. I had numb legs but still had quite a dull pain and strong aches. I think from what the Consultants have said I was supposed to feel quite a substantial amount of pain relief after 3 days but I didn't.

However, yesterday (11th day after treatment) after my hydrotherapy I didn't feel my usual pains, I did feel heavy aching but about 2 hours afterwards the whole of my legs went completely numb and tingley (even more than when the infusion was being administered), I literally poked my legs and couldn't feel anything. I deemed this a success, perhaps my system just took longer than usual to presents the effects of the treatment? I am wondering if it is because I am overweight somehow or because of the fact I have Benign Joint Hypermobility Syndrome? (It has been said that people with this condition do not feel the effects of Lidocaine Infusion). I started moving my neck (which is one of my main problematic areas that usually never has relief of pain) and it just felt numb. I did still have dull aches but my whole body started to tingle and it really felt like when you have general anaestetic and you can stick a pin in your leg and feel nothing!!

Today, (12 days post treatment) and the numbness has calmed down a little but I am still tingling and I am still numb. I have pain but it is like 3/10 BUT I do have strong aches which I would rate 9/10. I can't decide if the aches are better than having pain.. that must sound strange to you but with the aches you feel like you constantly need to stretch and the places where you can't stretch can make you feel really REALLY frustrated! Pain killers don't take my aches away..however they do sometimes take pain away.

Anyway, tonight as I stepped into the shower and my knee popped out of place (due to the Benign Joint Hypermobility Syndrome 'EDS 3) and then so did the other one!! They are both swollen and I think the knee caps have gone slightly to the side.. I have taken pictures of them both (below) so people who don't know about the condition can see what can happen sometimes...

BLOG 11: Treatment Day number 1

Nov. 19th, 2010 | 01:28 pm
mood: aggravated aggravated

Day of my first Lidocaine Treatment:

This is the day that I have been waiting 5 years for.

I finally have some kind of a solid treatment to undertake. One that promises pain relief for up to 3 months. Heaven.

I woke up at 6am. Didn't sleep very well, tossed and turned. Obviously I was nervous and perhaps excited? Strangely excited like a child on Christmas morning. I can't explain why. Maybe it is because I had been told that there simply were no more treatments available and there was nothing else they could do for me. This treatment was offered to me after seeing a new consultant for the first time. Even he himself could not understand why in the 5 years I had been seen at the hospital that not one of the many consultants I had seen, hadnt referred me to him sooner.
7am, the ambulance transport arrives to collect me and my friend to take me for the 1st treatment. (I was advised to have someone with me for this treatment as the after effects can cause wobblyness!).
An hour in the transport, butterflies in the stomach, thoughts whishing around in my head and I although I want to just be there and get it over with,  I at the same time welcome the heavy rush hour traffic, delaying my arrival.
Listening to another passenger/patient (a 78yr old Italian lady) also travelling with us, every word she said just irritated me. I wanted to sit in peace and quiet, alone with my thoughts and nerves, selfishly not wanting to hear of her problems, illnesses and treatments. It didn't help that she was very forgetful and kept repeating herself over and over and over again. Let's safely say she grated on my nerves and brought out a side of me I didn't like. A selfish, self-absorbed side that wanted to only think of myself.
I think that it was just the nerves making me react like that internally. My thoughts also turned to the disbelief that 5 years of hospital visits, on the 101st appt I would finally be recieving a treatment that would possibly rid me of most of my pains. I comforted myself by thinking that it was understandable to be slightly bitter and self-absorbed. Not wanting to hear of a 78yr old ladies aches and pains. I wish the expected ageing aches and pains were all I had to contend with...

Arriving at the clinic wasn't as bad as I thought. My mind went still as I signed in. I sat down in the waiting room and looked around at all the leaflets and posters on the wall and if it wasn't for my stomach clenching I would have felt like this had been just a normal appointment. 

After about 15minutes of waiting, my name was finally called out..well they called me 'Christine' instead of Christie for like 20minutes until they couldn't find the files for a 'christine' and asked me to spell my name!! I should have corrected the first mistake..but I really couldn't be bothered. It was petty compared to my other worries at this point.

They kitted me up with heart monitor pads and a blood pressure armband. They said my blood pressure would be measured every 5minutes so the armband was staying put!!  They took my stats, temperature, blood pressure, heart rate e.t.c and then asked me to just lie back and wait for the anaesetist consultant to come to see me.
There were 2 other patients recieving the same treatment as me in the mini ward, one on either side of me. We were only seperated by curtained seperators on wheels!! It was a very small cubicle, only big enough for my bed, one chair and the heart and blood pressure monitors.

Now I will admit I can be a bit of an earwig and enjoy it too!! So when the Consultant went to the lady on my left first I deemed it a good opportunity to get a heads-up on what would be happening today. He gave her the explanation of what the treatment is, how it works and how it should effect the body. He then administered the tube into her vein and although I couldn't see any of it happening..the ladies loud groan as it went in then made me very nervous and my heart monitor showed just how much!!! My blood pressure went up aswell.. nothing to worry about but hearing a shriek was NOT what I wanted or needed to hear!!

I was next..

About 10mins after the first lady it was my turn. EEK!! The doctor was very nice, I hit him with a question straight away, even before he started what he called his 'Long Shpiel'. What I wanted to know was, if the local anaestetic (Lidocaine/Lignocaine) was going into my bloodstream and numbing all over the nerve endings so pain signals don't reach my brain to register pain, then what would happen if something major like a heart attack was to happen but I wouldn't feel it going on?!
He then said good question, but if I was to let him proceed with his 'shpiel' my questions would probably get answered. I won't bore you with all the details but basically, yes I would feel any new pains, especially from major organs. My mind was now at rest.
He then informed me that if this particular solution in the IV didn't work there are 2 more they can try next time. Apparantly Lidocaine/Lignocaine effects our Sodium receptors ( I DONT HAVE A CLUE WHAT THIS MEANS) and if it doesn't work then it means other receptors need to be reached by a different treatment. Hmm... I'm fairly competant with medical terminology now but this receptor thing did confuse me...but I trust they know what they are talking about!!!

They took my stats again, heart..blood pressure e.t.c and then the doc got the tube for my vein. He aimed straight for the top of my right hand which made my blood curdle, I hate being touched on the top of my hand (too many needles and tubes have been there and it makes me feel sick..all pyschological I know). He saw me flinch and asked if I wanted it somewhere else, I answered'' PLEASE!!!'' but unfortunately I forgot that my veins in the elbow crease part of my arm hide now.. they too are SICK OF NEEDLES.
So, into my hand the tube went :( It was a bit painful actually, more than usual but it was over in like 5 seconds! Once the Lidocaine Infusion was activated to start entering my bloodstream it just felt cold . I felt and very very drowsy and floaty, nauseous.  My blood pressure dropped during the treatment so they kept taking it every 3mins instead of every 5. VERY ANNOYING because the armband was really tight!! I thought my arm was going to fall off!! My fingers started swelling up and going a funny colour so the nurse swapped arms to the one WITHOUT the IV drip (which is where it was supposed to be in the 1st place!) Still tight but not as bad.
This went on for an hour and then I had a 15minute break (still in bed) where I was finally given some water to drink!! ( It was nil by mouth since the night before) The nurse also gave me some biscuits.. I felt VERY SICK but I was starving.  A custard cream or two did noone any harm 8-p

This is me..looking a bit bewildered..no makeup and a bunched up cardi!!! Not the most flattering of pictures but for the purposes of why I am doing this BLOG (to inform and SHOW people what happens) I don't really care. I put on 3 stone after having the steroid treatment. Not being able to exercise doesn't help!! ANYWAY...

The next half of the treatment carried on for another 30mins I think and then it was all over. Same symptoms as the 1st half, lightheaded, floaty, nauseous, drowsy. When I sat up and stood up I was very whoozy. They told me to stay put until I felt a bit better. I just wanted to go downstairs and get my transport home. I wanted my bed.
Im very lucky that i didnt get the awful 'violent' vomiting as I was told to expect. I felt tingley and numb all over and I still do. My hands feel a little numb. It feels very strange to be honest. Like when you are given general or local anaestetic and an hour before it wears off you can start to feel again but there's still the effect of teh anaestetic there.  Apparantly i was supposed to notice the pain- reductiion after 3 days but unfortunately it didn't work, unsuccessful. This treatement I had waited for didn't work.  I am GUTTED and so disappointed!!! BUT..and there is a BIG but there are the other two IV treatments they can try so fingers crossed for my next one in february!!

Thank you all for your support and kind words, it's been so so lovely having such a great support network!!

Friday 19th November:

RANT TIME: Today I am feeling very rough..I have a headache and my body feels like its been run over or dragged around for days. I am fed up because I was going to FINALLY see Harry Potter ( i am a fanatic) after waiting like the whole year for it and now I have had to cancel my plans. Im supposed to be going to see my... friend tomorrow and i think im going to have to cancel that too. I dont understand WHY I am feeling so bad today?? I didnt do anything yesterday!! Went to bed feeling 6/10 ok and I woke up today and am feeling 8/10 pain!!! Its also Sunny today which is very rare and I am stuck inside looking out..ARGHHHHHHHHHHHHHH!!!

Im anxious about my DLA appeal aswell.. I recieved the letter accepting my appeal request and they are FINALLY writing to my consultant for details. This for me is a good sign because he is very supportive and I think his report might just do the job!!!
The waiting is doing my head in though and I've noticed that for a few days my mind is running at like 80mph.. im having constant thoughts and they are all chopping and changing and constantly there. I think I am so stressed out about a mixture of things that my mind just cantt relax.
I tried meditating which I enjoy but just couldnt switch off. Every day Im feeling different, positive, negative, happy, sad, upbeat, gloomy.. its madness!!! One day my friend came over and i cried the whole time, next time she came I was feeling upbeat and more positive and she was really glad. BUT NOW..im feeling unsettled and highly anxious. Its really tough. Im on the waiting list for counselling but they said its like 18months!!!! I think my mind is going to marry my body troubles and together they are going to slowly turn me INSANE.


BLOG 10: Baby Steps..

Oct. 22nd, 2010 | 01:55 pm
location: home
mood: contemplative contemplative


Hi everyone,

It's been a while since I last updated my BLOG. Alot has happened since.

As you know I fractured my wrist just by sitting down! I had the cast off, had an MRI, had the cast on for a further 3 weeks and now... it's OFF!!!!!

I have to have physio to strengthen it up again after it being so immobile fore like 7-8 weeks. It's doing ok, pains me sometimes and is a bit stiff but it's ok.

DLA update:  Well also as you know, DLA turned me down and then I sent a formal complaint against the decisions maker and had it re-assessed for the 2nd time. They turned that down aswell so I have sent in an Appeal letter. I am waiting to hear the outcome of that..if that is declined aswell I will take it to tribunal.

Help After I was turned down DLA I realised that there IS still help out there for me. I may not be 'officially disabled' but I am unable to do ALOT and need some help. I went to my GP for a referal to an OT (occupational Therapist) I also asked for a care assessment and have a social worker coming to visit me soon.

I also applied for a Blue Badge which turned me down BUT I will be appealing that aswell!!! You just have to keep trying. Don't give up with these things!!!

I'll keep you updated about all of the outcomes.

Update on my conditions: As i'm most of you will be hating the cold weather and those of you with joint and muscle pains must be suffering terribly, I know I have been!! The cold damp air has been playing havoc withy my joints, they're so stiff and painful and have been clicking away like maracas! Most of body has been suffering, I really think my conditions are deteriorating and I have been really panicking and worried.

Thankfully I got given a specialist phsyio appointment after being on the waiting list for about 3 months or so.

Today I had my consultation.

UCH/NHNN Appt Number: 99  Yep you read correctly.. my 99th appointment was today!!! My 100th one will be on the 12th Novemeber!!!
Today I saw a Specialist Physio 'Dermot' at NHNN Pain Management clinic. He was really lovely and although realistic, very hopeful and encouraging.

It became apparant that alot more exercising and stretching can be done by people suffering with conditions like mine ESPECIALLY Hypermobility Syndrome which was really surprising. He said that JHS sufferers CAN eventually go to the gym but only gradually building up and knowing your limits. Pacing was mentioned a few times and there are a FEW SUPPORT AND EXERCISE groups run at the National hospital so speak to your consultant or GP for referrals to the Pain Clinic.
Dr Paul Nandi and Physio/Pyschologist Dermot are really excellent specialists and very easy to talk to and understanding towards your conditions .
He also seemed shocked and slightly disgusted that the term 'Buffalo Hump' has been used in my medical reports and to my face.

I was also so surprised that despite popular belief you CAN stretch hypermobile limbs/joints within reason (that is and after your physio teaches what and how you can do exercise) you should put the time and effort in to build up. Their policy is NOT 'no pain no gain'... THANK GOODNESS!!!

After my Lidocaine Infusion treatement in November i will be starting a physio group where I will attend a pool and hospital gym to learn stretches and exercises to help build up strength! I'm hoping that lifting a Kettle won't be such a mammoth of a task once I start the physio!!
OBVIOUSLY I have many more goals but baby steps eh?!

One day at a time.

BLOG 9: Good old Chase Farm Hospital... NOT!

Sep. 26th, 2010 | 11:42 pm
mood: aggravated aggravated


No update really, just thought I would have a little moan and rant  today about the weather and the NHS.

The weather in the UK has gone berserk, one day it's almost hot, next day it is actually FREEZING and we have had to put the heating on.
The chopping changing weather has been yo-yoing for at least 3 weeks now and it is playing havoc with my joints and muscles. My twitches have increased with a vengance and my joints are KILLING ME :( Any tip how to save arthritis and HMS when it's evil weather?)

On top of that my fractured wrist was supposed to go immediately back into a cast after my MRI 8 days ago, but the staff incompetantly forgot to inform me of this and take action of this and so I have been in a splint instead!! They are rushing me back in to go back into the cast until the MRI results are in... they are actually delayed so if I hadn't have rung them querying why I hadn't been contacted, my wrist would be just left to fend for itself. Charming. Good old NHS :-/

Here would be where I would go off into one about the NHS but I have been so kindly reminded that without the NHS what would I do? and that I should be greatful for our health system. All very well but just because we don't directly pay for the health service like other countries may do,it doesn't mean we should just accept incompentance and poor practice. At the end of the day, working people DO PAY for the NHS through taxes so therefore we should have a proficient standard of service that matches up to private healthcare. I know we lack resources and funding BUT it doesn't excuse poor practice, negligience and incompetance. I sat for 8hrs the other day in casualty/A&E and what I witnessed over the 8hrs was really unbelievable. Just to mention a few things there were full bedpans left in consultation cubicles, blood on the floor and walls, used tissues on the floor, unchanged bed coverings and a head staff nurse who yelled at his staff infront of patients and was rude enough to actually ignore me and others when asked a question.
There was SO much more but seeing as my joints hurt right now I will save it for another day...

By the way...the hospital I am currently talking about is Chase Farm Hospital, currently officially branded one of the worse hospitals in the UK!!!!

BLOG 8- What a down pour!

Sep. 6th, 2010 | 03:23 pm
mood: cranky cranky

Blog 8

Well, today I am achey and moany and in pain BUT I still rang up the disability benefits office and asked for my claim to be re-assessed by a different officer AND I gave all the opposing reasons in reference to his petty answers as to why my claim was declined!!

I also wrote a formal complaint against the original decision officer and that's been sent off!!

Next step is contacting my local MP and getting people to sign a petition that is running online about disability and sickness benefits.

If you can please sign it, it takes like 3 mins!


Thank you!!!

I get my cast off next tuesday ( I fractured my arm) and then have an MRI on wednesday.. ALL FUN!

I'm not feeling too good, in pain and grumpy!! For some strange reason my ankle and top of my foot has swollen..

WelI, it's chucking it down with rain, it's cold, grey and rainy...I made a non-bake cheesecake yesterday..I think i'm gonna eat some 8-p
Death by Cheesecake?!

 C x

BLOG 7: DLA, This time it's WAR!

Sep. 3rd, 2010 | 03:21 pm
mood: determined determined

Friday 3rd September

Ok, I am livid. For the 3rd time I had been refused DLA allowance and this time it's insulting.

The reasons they gave me for not awarding were complete and utter rubbish (and that is putting it politely!!), The reasons did not match up with my answers in the slightest and from the 3 pages list of why I am not eligible it is 100% clear that the assessment officer did NOT read my application or supporting papers. I am insulted and upset and I will not take this lying down. It will put a physical and emotional strain on me but where do these people get off?  I don't take all my medications for fun or because I am well and able!!

I will be requesting a detailed report from this so called assessment officer and I will be sending in a complaint about this so called assessment officer and I most certainly WILL be appealing this decision in court. Go on.. interegate me, make me feel like a fraud and a fake... i'm ready for you and I am going to win!!!


BLOG 6: Go on and infuse me!!

Sep. 3rd, 2010 | 03:05 pm
mood: blah blah

Tuesday 31st August- Appointment number 98!!

Today I had my appointment with Dr Nandi at NHNN's Pain clinic (my 98th appointment since 2004!).
I knew that it was to discuss if I had decided to go head with my treatment plan of 'Lidocaine Infusion' or not. But before I gave my answer I had alot of questions.

''What is Lidocaine Infusion? What are the stats of it's success rates and what are the side effects?''

''Lidocaine Infusion uses a similar technique to that of Chemotherapy. The patient sits or lies for anything up to 3hrs whilst a small tube is inserted into a vein and the local anaestetic 'Lidocaine' with some pain killers is IV dripped into the bloodstream.''..

''Why is a local anaestetic administered into your blood?''

''..because the local anaestetic numbs the nerve endings so that pain does not accumulate and the pain signals do not reach the brain, hence the reason it is given as a pain relief treatment. The effects can last for as liitle as a few days or for as long as a few months, each patients outcomes vary. This treatment has been performed on around 400 people and has had up to an 86% success rate. However, please be prepared that the effect may not be as strong or successful as you hope for and remember this is not a cure..it is merely like taking a paracetemol..its just pain relief.''

''What are the side effects and how many times do I have this treatment?''

''You will need someone with you to assist you after the treatment as you will almost definitely feel dizzy, lightheaded and possibly whoozy. You could feel very nauseous and experience violent vomitting but this will not last very long. You will also feel some tingling all over your body, this is completely normal. We will assess how often you will have the treatment by how successful it has been with you. We do not have the sources to provide weekly sessions but we can probably offer once a month or every other month and after 6 sessions we have tablets which have similar effect to the Lidocaine Infusion but obviously not as strong''.

'' If the Lidocaine Infusion is so successful that I do not feel pain, what happens if something major happens within me such as  heart pain and I do not feel the pain?Is that not dangerous?''

'' That is a very good question but you mustn't worry because although the Lidocaine Infusion eases pain, it has not been known to affect major organs and even though pain relief will be present, it will not be strong enough to cover up any new pains that you may experience.''

Ok, so I got my answers and I agreed that I will give it a go, any pain relief is very welcome and seeing as it is the first and apparantly only treatment other than steroids that can help me..then how could I say no?!

A 45 minute journey, an hour waiting in the clinic waiting room .. and a 10minute consultation... Hmm..not exactly the most satistying outcome of the day. I was feeling a bit deflated and to top it off there is a 3 month waiting list for the treatment. Great..i'm gonna be all over the place around Christmas time. Christmas is already difficulty enough tio deal with when you are unwell. Keeping up with all the functions and dinners and parties and shopping is a nightmare when you can hardly walk AND when you are living on abouT £8 per week  after all the bills are paid there's not much you CAN do anyway!!

I was hoping that the Dr would at least ask me how I was doing and how my new med increase was working out for me..but nope..thanks to the chatterbox lady who was in before me...Dr Nandi was running an hour late which left me with a quick in and out job! Charming!! :-/ wham bam thank you maam!!!

 After my quick encounter with Dr Nandi I went downstairs to claim my travel money back, only to find the office had closed 10minutes before!! Great timing.. so I thought to myself.. i'm fed up and I may as well make use of the travel card..Oxford street is just 5 minutes away, why dont I finally make my first visit to Primark?!! I know it was stupid and of course I KNEW I would severely pay for making myself walk around Primark but for some reason I felt adventurous after such a dissapointing day and I was determined to go and spend money that I didn't really have to spend in the first place!! I never EVER go on shopping sprees so it kind of excited me and I hoped that the physical consequences would be worth it...  BOY DID I PAY FOR IT... was it worth it? Nothing's ever really worth THAT sort of pain but I was pleased with my purchases 8-p It will NOT happen again though, not just for the obvious reasons but also for the pure fact my bank account would be non-existent as my stupid income support just about covers my bills!!

I know that sometimes, just sometimes, you have to treat yourself but it left me wondering... is it REALLY retail therapy when you end up feeling worse afterwards and need therapy just because you have looked back at all the receipts and had a meltdown??!!!

BLOG 5: Statistics, Results and Diagnoses

Aug. 22nd, 2010 | 06:35 pm
mood: cynical cynical

BLOG 5: Statistics, Results and Diagnoses

This is the BLOG where I am going to give you numbers, results, misdiagnoses and my final diagnoses.

It was a long road to be able to get to this particular BLOG. I am not confident that things won’t change but for now this is all I have.

First GP appointment about these problems:  July 2004

First Consultation Date at UCLH:  16th January 2006

Total Consultations and tests at UCLH and National Hospital for Neurology so far:  111

Total Major Tests/Ops carried out: Approx. 25 with 4 Biopsies to date

 (Not including blood tests)

Recommended Consultants/Specialists:

*Dr Chris Turner at NHN (National Hospital Of Neurology, 33 Queen Square)
*Dr Paul Nandi
*Dr Isenberg: UCLH
*Dr Edwards: UCLH

*Dr Mike Shipley:UCLH

FINAL DIAGNOSES (each will be explained later on in this Blog)

* An Undiscovered + Rare 'Inflammation Myopathy' (muscle disease)
* Benign Joint Hypermobility Syndrome (Type 3) (EDS 3)
* Arthiritis
* PVFS (post viral fatigue syndrome also known as M.E and CFS).

 Blood Diagnosis:

*Thallasaemia Trace
*Mild Hypochromasia

Current Symptoms:

Muscle aches (Myalgia)
Muscle Pains
Muscle twitches/jerks

Heavy feeling in my limbs
Easily sprained, strained and sub-luxing joints

General fatigue. (worsened by any exercise especially walking)
Tender joints
Cracking/clicking joints

Weak muscles
Bad back pains and aches

Sleep disturbance
Hot flushes
Smell sensitivity
Muscle spasms (particularly in neck and buffalo hump')
Inflamed muscles (sometimes inflame so they are solid and tender to touch)

 Past Treatments:

*Another Steroid (cannot recall name)

Planned Treatments:

*Lidocaine Infusion Treatment with Pain Killers
* Further Specialist Physiotherapy
* Hypermobility Syndrome Specialist Group Meetings
*Increase in current medications

Previous Misdiagnosis’ BEFORE final diagnosis’ (over 5 years):

Cushings Syndrome
Metabolic Myopathy
Adrenal Fatigue
Food Allergies/Intolerances
Muscular Dystrophy
Tropical Disease
Underactive/Overactive Thyroid
Hypertension Syndrome (High blood pressure conditions)
Inclusion Body Myositis
Autoimmune Disease

If I was to give anyone going through what I have been through some advice, then it would be don't take any diagnoses as final word. Question why the doctors have come to that conclusion and if there is any possibility that what you have could still be something else. When you get home, research the diagnosis. If anything doesn't match up or you don't feel it is correct, write down questions and comments and either send them to your consultant or take them in with you next time you see them.
The amount of different diagnoses I have recieved over the years is ridiculous, painful and unbelievable. To have a consultant specialist tell you that you have something and then reverse it afterwards is difficult. It plays with your emotions and is very frustrating. I understand that they have to rule everything out and it is process of elimination but I was shocked at the amount of times I was diagnosed with something verbally during consultation and then it would not appear on paper in their post- consultation reports and then after months of thinking I have something to be told you dont have it at the next hospital appointment is awful.

I am confident FINALLY that my final diagnoses are accurate but the only thing I am dubious of is the ‘Arthiritis’. My consultant told me that the type of Arthiritis I have does not show up in any tests. The BJHS Type 3 symptoms are very very similar to those of arthiritis so I don’t know how they know the difference whether I have arthiritis of its just the BJHS? I know that BJHS can cause Arthiritis and Osteoporosis so it is possible I have it. Just a bit confusing really!!


This bit is long but I wanted to include it in my BLOG so people can learn about the conditions, particularly my friends and family.

*Benign Joint Hypermobility Syndrome (Type 3)

Excessively loose joints are the hallmark of this BJHS/EDS type 3 (Ehlers-Danlos), formerly known as EDS type III. Large joints and small joints are affected.

Patients generally report multiple complaints of pain over a prolonged period. This type of general pain is often called, "growing pains," or "limb pains." Another commonly used term for BHJS is the benign type of Ehlers-Danlos syndrome ("type 3").

BJHS usually presents as joint pain or mild swelling of stressed areas such as the forearms or joints.

Partial and total joint dislocations are common, and particularly involve the jaw, knees, ankles and shoulders. Many individuals experience chronic limb and joint pain, although x rays and scans of these joints appear normal. Pain and fatigue of the muscles surrounding the joints is very common in this condition. The skin may also bruise easily. Osteoarthritis is a common occurrence in adults with EDS. Often this condition can mask as arthritis but can also lead to arthritis due to the wearing down of the joints.

Those with EDS/ Benign Joint Hypermobility Syndrome are advised to avoid such activities as excessive, repetitive and over-training as it can cause the muscles and joints to over-work resulting in muscle and joint damage. Specific stretches and exercises are key to avoiding wear and tear and any others may cause further problems and progression of the condition.

Most individuals retain life-long BHJS and have frequent discomfort and can also become injured more easily. They must learn ways to carry out simple every-day tasks to avoid dislocations and sprains.

BHJS often leads to arthritis later in life and some may develop shoulder or kneecap problems if there are frequent dislocations, or if the cartilage around these or other joints becomes excessively worn.

Patients with BJHS often continue with increased muscle pain from hypermobility as they become adults. These people remain at increased risk of trauma-related sprains, injuries, dislocations, intermittent swelling, backaches and post-exercise discomfort.


*An Undiscovered + rare 'Inflammation Myopathy' (muscle disease)

-In most cases, the cause of an inflammatory myopathy is unclear. For some reason, the body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune response condition. Not all myopathies have autoimmuno responses.

Viruses might be a trigger but research is still being carried out by specialists all over the world to pin point inflammatory mypopathies true triggers.

Mainly characterised by inflammatory and some degenerative changes in the muscles, which then lead to weakness, pain and the inability to continue with normal everyday life. The inflammatory myopathies are a group of muscle diseases that involve inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. A myopathy is a muscle disease, and inflammation is a response to cell damage.

The inflammatory process leads to destruction of muscle tissue, and is accompanied by weakness and sometimes pain. Over time, there can be loss of muscle bulk (atrophy).

Normally, we think of inflammation, such as that following a sprained ankle or a dental procedure, as a condition that makes a part of the body hot, red and painful to touch. But inflammation also can be internal, causing tissue destruction in various organs. The common denominator in both types of inflammation is the presence of cells of the immune system in great numbers. Under a microscope, these can be seen “invading” the tissue as an army invades a city.

Another word for inflammatory myopathy is myositis. The myo root means muscle, and the itis root means inflammation; so a myositis is an inflammatory muscle disease.

Fortunately, for two of the three inflammatory myopathies in MDA’s program — polymyositis (PM) and dermatomyositis (DM) — effective treatments are available. New research is rapidly leading to increased understanding of these disorders and more successful treatments for them.

Although inflammatory myopathies can lead to great discomfort pain and a massive change of life, for the most part they aren’t life-threatening.


- Arthritis (from Greek arthro-, joint + -itis, inflammation; plural: arthritides) is a group of conditions involving damage to the joints of the body.

There are over 100 different forms of arthritis[1][2]. The most common form, osteoarthritis (degenerative joint disease) is a result of trauma to the joint, infection of the joint, or age. Other arthritis forms are rheumatoid arthritis, psoriatic arthritis, and autoimmune diseases in which the body attacks itself.

The major complaint by individuals who have arthritis is pain. Pain is often a constant and daily feature of the disease. The pain may be localized to the back, neck, hip, knee or feet. The pain from arthritis occurs due to inflammation that occurs around the joint, damage to the joint from disease, daily wear and tear of joint, muscles strains caused by forceful movements against stiff, painful joints and fatigue. The most important factor in treatment is to understand the disorder and find ways to overcome the obstacles which prevent physical exercise.

PVFS (post viral fatigue syndrome also known as M.E and CFS).

-The main symptoms of the syndrome are disabling fatigue, musculoskeletal pain, neurocognitive difficulties. Other symptoms experienced by some patients are those of nausea, dizziness, loss of appetite and patients may also present with unrefreshing sleep. Patients with this illness may explain that they experience good and bad days with their symptoms and their activity may range greatly from a bad to a good day. Other conditions must be ruled out before diagnosis.

-Chronic fatigue syndrome (CFS/ PVFS/ME/FIBRO) is an illness characterized by prolonged, debilitating fatigue and multiple nonspecific symptoms such as headaches, recurrent sore throats, muscle and joint pains, memory and concentration difficulties. Chronic fatigue syndrome is a debilitating and complex disorder characterized by profound fatigue of six months or more. It is a seriously debilitating chronic illness characterised by pain, fatigue, and a wide range of other symptoms. It is a syndrome, not a disease. It is not contagious, and is probably genetic. It affects more women than men, mostly between ages 20 and 50. It is seen in 3-10% of the general population.

So, there you have it. The full shabang. I don’t know what you think of it all but I know that it was a nightmare getting there and I pray I don't have to go through any more.

I know that a lot of people out there still won’t fully understand what I and many others have to go through everyday living with my conditions. I don’t really expect them too either. I will try to explain in my next Blogs because me thinks this BLOG entry is far too long!!

Just a few words to wrap it up..

Living with the aches and pains,
The tiredness, fatigue, hurts and sprains.

Something in your heart just breaks,
As you continue to live with these pains and aches.

Your mouth will smile but your heart will cry,
Leaking out with a subtle look in your eye.

You can hide the pain and live each day,
As if you were healthy and wouldn’t pay.

But some days when you know you just can’t hide,
You’ll reach for a friend in which you’ll confide.

Looking back at the past, hurts more than you’ll know,
But with a smile on my face it will never show.

Accepting some help and locking pride away,
Will not rid of the old me which always will stay.

I may not be the same as I was before,
But I still have things to offer and I'm wanting more.

I must not let the illnesses take over me,
As I am who I am and I’ll be who I’ll be.

Behind these illnesses I will not hide,
As long as I have you by side.

Giving up is not an option for me,

There is still a world out there to see.

I am grateful for friends and family each day,

For accepting me as I am this way.

Christie xx

BLOG 4 Here comes the Science..

Aug. 22nd, 2010 | 03:28 pm
mood: cranky cranky

3rd October 2005 (1year and 3 months since the virus)

Ok as this has taken me so long to write I’m going to get straight back into it and carry on from the last blog.

So..  I continued to see my GP with the same complaints:

Muscle aches (Myalgia)
Muscle Pains
Muscle Twitches
Occasional jerks

Heavy feeling in my limbs
General fatigue. (worsened by any exercise especially walking)
Tender joints
Weak muscles
Sleep disturbance
Hot flushes
Inflaming Muscles
Sensitivity to smells

My GP kept sending me off for more blood tests after each visit and I would go back for the results which would be exactly the same or worsening. No improvements.

On the 3rd October 2005 she FINALLY decided to refer me to a specialist rheumatologist at UCLH (University College London Hospital) where my long journey of investigations would begin.
Until my first consultation appointment arrived, I just had to wait. Be patient and wait, of course my new daytime soap addiction helped me but the waiting was frustrating and long!!

16th January 2006

This was it, finally the day of my first consultation with my first specialist ‘Dr Edwards’.
I was so very nervous but also at the same time I was convinced that this man, this specialist in his field, would be the man to identify my problem and make me better.

Unfortunately and as I'm sure you have already anticipated, he couldn't and he didn't.

For 4 months Dr Edwards saw me often and sent me for blood tests for many many different conditions. Everything came back negative which strangely made me feel upset. Of course I didn't WANT any of the diseases but to just find out what was wrong was all I wanted and then at least I would know my position and where I stood.


Ok so most of you won't have a squiddly clue what I am about to relay back to you, it is all medical jargon but some of you who have experienced all these terms over the years may know what I am on about!!

My blood test results would come back as:

Raised White Cell Counts ranging from 13.43 up to 15.00
Mild Hypochromasia
Raised ESR starting at 78 and increased
CLP around 8+
Reduced Albumen of 31 grams per litre
Globulin at 46-50
CRP increasing starting from 28
Borderline Thyroid
CK levels 64-69
Raised Erythrocyte sedimentation rate and C reactive protein

I was then sent for A Chest X-ray, Lung function test, abdominal and pelvic ultrasounds, PET scan, CT scan, x3 muscle biopsies (which I will discuss later on) and also one of the most barbaric and in-humane tests I have ever endured..the 'EMG' (electromyogram).


Ok so I COULD copy and paste an official explanation of what an 'EMG' is and how it is conducted but I’m not going to because they make it sound simple, painless and with hardly no after effects.

I do NOT want to scare you off, especially if it has been arranged for you to have an EMG carried out BUT what I do want to do is prepare you and give you my honest recollection of my experience.


I honestly wish I had someone do this for me before I went through these things.

READY? Here goes…


How is this done?: By fully inserting approx 5inch super thin needles into your muscles (no numbing wipes or anaesthetic used) and then conducting electric shocks through the needles to measure activity and responses.

Does it hurt? I'm sorry to say this but YES. Oh my goodness did it hurt hurt hurt!!
 EVERY DOCTOR AND EVERY WEBSITE will say that this test is just 'uncomfortable' and you will only ache for a few minutes and that ''children can endure it''.
It was EXTREMELY uncomfortable and painful and the electric-shocks DID hurt a lot.
I honestly, as a HUMAN being with quite a high threshold for pain, do not understand how the medical world in this day and age can STILL perform and carry out tests this hideous on ANYONE! 

I have been told many times that there is no other effective and precise way of doing this test but to me it is inhumane and barbaric and should be banned!!!!

PERHAPS it was just me...maybe other people can endure the pain or do not or will not feel the pain as much as I did? HAS ANYONE HAD THIS TEST DONE AND IT DID NOT HURT THEM?? PLEASE LET ME KNOW! I am VERY interested to hear.

I had my 1st EMG done all over my legs and near my groin and pelvis. My results FINALLY showed something significant! I had abnormal short units particularly on my Ilopsias muscle. These results showed that an inflammatory process was happening, which usually leads to a diagnosis of a myopathy (muscle disease).

My 2nd EMG was carried out all over my body, the same horrific experience only this time everywhere! My neck, back, arms and legs, wrists, shoulders, ankles, you name a place and thats where they did it!

I’m not going to describe and speak about every single consultation or test carried out on me because that would take a VERY VERY LONG TIME. I am going to describe some things I would have liked to have known beforehand.

Bear in mind that from here on I will be talking about things I went through over a 4-5 year period and won't be putting exact dates as that would mean trudging through a very large file of appointment letters!

Abdominal Scan

Ok, so the abdominal scan..

Carried out to check in and around the abdomen area. Just how pregnant women have their ultrasounds, they put a cold clear liquid/gel on your tummy and press a camera type thing around your stomach.

Does it hurt? Well my one did actually, I have had them before but this one did hurt. The lady pressed so hard onto and around my internal organs that I could feel the shape of each organ! It was very weird and actually quite gross having this thing prodding and pressing your kidneys and lungs!! It didn’t last long though and as per usual, nothing showed up.

Pelvic/bladder/kidneys/Womb scan

Very similar to the Abdominal scan, only this time I had to drink 2 pints of water ( I misread and drank 2 litres By accident!) beforehand and wasn’t allowed to go to the toilet until after the scan!
Being pushed and prodded and pressed hard onto my internal bits was difficult PARTICULARLY on the bladder!!! So hard when you are dying to pee! Again, it was very quick and painless just uncomfortable!

Womb scan.. not very nice but had to be done. I won’t be explaining that one!!

Lung Function Test

The lung function test is difficult but painless. All that happens is they put a peg type thing on your nose and make you breathe/puff into a machine over and over again to test your lung strength. I have Asthma so it wasn’t very easy and was very very tiring but I think even without asthma that would be tiring!

Muscle Biopsies

Ok so I had my first muscle biopsy carried out in November 2007 on my left thigh muscle.
On the day of the muscle biopsy you go to a Day Hospital (mine was in UCLH National Hospital for Neurology) at 8am and you are shown around the ward and assigned a nurse for the day. This particular ward had no beds just high back leather chairs which were quite comfy actually!

Then you fill in lots of forms and are given a wrist hospital strap with your name and date of birth e.t.c. I then had to wait about 3 hrs until the anaesetist came and had a talk with me about what he would be doing, scars and effects and after-care post procedure.
He explained where they would be doing the biopsy and he drew a cross on my left leg where he wanted the op to be carried out. He showed me his prediction of how long my scar would be (3-4 inches long) and then he asked many questions about my conditions, symptoms, medications, medical history and allergies. After this I had to sign the dreaded permission declaration form that basically covers them if anything were to go wrong and that includes signing that you are aware of death from the procedure! It’s scary and slightly off-putting but it is just procedure and the likeliness of you dying is so unlikely!

I was given a sedative and then had to change into a hospital gown with just knickers on underneath! No jewellery is allowed.
After about 30mins I was put onto a bed and wheeled into theatre.

I was extremely nervous and when I thought about what was about to happen with me AWAKE I did panic and start crying. I felt so stupid because I knew it was a simple procedure that they did all day and everyday but it didn’t help. I was terrified the anaesthetic wouldn’t work and I would feel the incision and the cutting of the muscle.

One of my usual symptoms are muscle twitches and unfortunately just before the procedure started my leg muscles began twitching which made everything very complicated.

Before anything started the surgeon, surgeons assistant, nurse and anaesetist introduced themselves and explained every step of what they would be doing. They also promised to tell me everytime they were going to do something and talk to me throughout. They then continued with small talk and trying to distract me and calm me down by asking me questions about myself whilst they were preparing the operating instruments. For me, this did not work, even though I was answering their questions I was still crying and felt sick and terrified. My leg twitches seemed to be set to stay which worried me even more!

The first part of the procedure

*Was wiped on the biopsy site (my thigh) with that brown numbing and sterilising stuff

*Waited for a few minutes then I was told that they would be injecting the anaestetic into my thigh and that it was going to be the worse part of the whole operation! Didn’t help me being told that because I panicked and tried to get off the operating table! They calmed me down enough to get me to keep still and then they said that once the pain and stinging from the injection eased I wouldn’t feel a thing. This was true, the anaesthetic injection was horrendous. It stung like crazy and oh my goodness it really hurt but once that eased I couldn’t feel anything, it was very strange!

*The surgeon asked if I could feel this or feel that and thank goodness I couldn’t but the surgeon then said to me that as I had a lot of fatty tissue and solid muscle I should be prepared to feel something as he had to cut deeper than anticipated. After a few moments I could feel the knife so I managed not to scream and grabbed the nursed hand and yelled stop. I had to have another 3 anastetic injections as he cut deeper and deeper and unfortunately my leg began to convulse. (This had happened to me before with local anaestetic, it seems I react badly to it) They called in another nurse to hold down my leg so the surgeon could continue, it worked for while but as the surgeon cut nearer to the muscle the pain was awful and I started to fidget so he had to stop for a few moments. He explained that once it gets to the point of snipping and cutting the muscle specimen off  I would feel pain and tugging because they can’t inject anaestetic INTO the muscle as it messes up the specimen piece, so when he finally got to the site he poured some anaestetic onto it and then said ''take a deep breathe I’ll do this as quickly as I can''. So I did that and the weird tugging feeling started, which felt as though someone was knitting with my muscles inside my leg, THEN the snipping and cutting of the muscle started and WOW.. THE PAIN was immense! My convulsions got worse and as the muscle was being cut it caused a wave of contractions along the leg as the muscle is shortened and my leg did a big convulsion, which (BE READY FOR THIS..) caused the surgeon to nip one of my nerve endings. Then I don’t know what happened because I actually saw blood squirt up everywhere and all over the poor surgeons face!!! They quickly wiped him up and he said ''ok Christie, this is getting messy so I’,m sorry I have to do this quickly and sew you up, take another deep breathe..'' so I did and 4 stabbing pains followed, I made a loud wail and then the pain eased..finally!!! The horrible bit was over and it was time to stitch me up! As the incision was so deep it was explained that I would have a lot of internal stitches aswell as 20 stitches externally. The stitching up part was ok but half way up the anaestetic started to wear off already (despite me having 3 extra injections than normal) so I started to feel some small pricks where the stitches were going in and out. It was bearable so they didn’t give me anymore.
They wiped me up and helped me slowly onto the bed and warned me that I would be feeling a bit sick and whoozy and that for a few hours I may not feel too much pain but that doesn’t mean I can walk around on my leg because soon enough the anestetic would wear off completely and then the pain would come and boy did the pain come… EVIL!!!

*I stayed in the day hospital afterwards for about 4 hours and my nurse administered pain killers and had to keep coming to re-dress the wound and bandage me up! As I have large thighs the bandages kept falling down…it was very frustrating!!!
Anyway, I had to be wheeled to the car and when I say I was in for a rough night..that could be a slight understatement..
The pain I felt was intense and unbearable, deep within my thigh it was like I was being stabbed everytime I moved my leg even the slightest. I couldn’t walk and I couldn’t even get off the sofa! Only the strongest pain killers helped but even then for the next week or so the pain was vile! I didn’t walk for about 3 weeks properly and my stitches slowly started to dissolve. The wound healed very well and now you can hardly see the scar.

*The 2nd Biopsy I had on my right leg in 2009 and a skin biopsy from my armpit. It was basically the same experience but without the nerve nipping and no blood squirts anywhere! I did have convulsions and twitches but they were able to hold my leg down. The pain afterwards wasn’t as bad as the last biopsy BUT the underarm stitches were very very uncomfortable as its quite an awkward place to have stitches as they kept rubbing every time I moved my arm!

This time I wasn’t given self dissolving stitches so I had to go to get the stitches out.. nothing is simple with me though as my skin had overgrown over the stitches so the nurse had to snip my skin as well as the stitches, which wasn’t a very nice experience, especially as she only wiped my skin with those little wipes they use before a flu jab or travel injection! DOES NOTHING TO HELP!

At least I healed well and my 4inch scar is very light….

I think it's safe to say I feel like the most prodded,poked and cut up lab-rat out there!

Will the tests ever end?

BLOG 3: From here it changed..

Jun. 27th, 2010 | 08:00 pm
mood: hot hot

June 2003

Ok, so 2 months down the line and I am in full time dance teaching, have a new boyfriend and have just enrolled in Pineapples part-time performing arts school..so not only am i a TEACHER there but I get to be a student aswell! FUN!

Life was great, just how I had hoped for and In two days time I was going to the open audition for 'Hairspray The Musical'. I matched up to the ad..FINALLY!

' Wanted, a chubby musical theatre performer to play the role of 'Tracy Turnblad' in the new West-End musical 'Hairspray'. Must be able to sing, dance and act. People over 5ft5'' and under size 16 need not apply'.

Perfect, I was under 5ft 5 and size 16 at the time so this was it...the role was waiting for me, all I had to do was get through!!

The day of the audition I was really nervous, more than at any other audition. I think because not many roles like this usually come up. There were only a few Character actress and 'chubby' performers roles out there and this musical was one of my favorites.

I sat in the audition waiting room consciously trying not to sum up the other auditionees. I usually tried not to even notice anyone else at auditions because there was always so so much bitching and pysching out that I had just had enough of it. FOCUS!

A little squabble in the corner made me look up and noseyness got the better of me so I ear-wigged!

 ''You are SO NOT over size 16! Why are you here? It's SO unfair! YOU can go an audition for ANY other role in every single other musical out ther but WE cant. Just let US have a chance for once!''

By the time this poor irate girl finished her sentence one of the members of staff came into the room to see what was going on. Luckily they agreed that there were at least 15 girls in that room who were well over 5'5 and very probably like a size 10! So they asked them to leave quietly and then asked us all to hand in our CV's and stand in a line ( I felt like I was in Chorus Line doing this). I did feel uncomfortable when three auditioners walked passed each of us summing up our 'looks' to see if we could get through to the next round. Out of 60 of us 15 got through...and I WAS ONE OF THEM!! :) Woohoo! Round one..check!

Round 2, we had to read out a piece of the script in an American accent infront of the panel.... ROUND 2 passed!! Check!!!
10 of us left..next round singing...
I didn't get through :( GUTTED!!

For the first time it took me quite a while to get over this rejection. I was proud to have gotten so far and again I knew I was doing something right. Maybe I just needed to polish up on singing which was ok because I  still had the Pineapple Performing arts school and I could take lessons, which I did.

For another year I trained hard and continued to teach all over London and audition for whatever I could.

A year on...

July 2004 The month it all began 

The first week of the Pineapple Summer Musical theatre course was over, after a week of real intensive training and rehearsing in the crazy summer heat, we performed our end of course show and I was so happy and geared up for week n.o 2 'Street dance week'. I had the weekend to rest and then it was back to intensive days. I couldn't wait.

Sunday, one day before the new week at Pineapple and I started to feel a little tired. I put it down to the fact it was baking hot and I had just had a real active week. I lay in my room reading magazines and when it got to the point I had to put the magazine down because my arm got achey I worried that maybe I had overdone it all a bit last week so I layed down and eventually fell asleep.

Monday Morning, 8am, one and half hours 'til Pineapple... but eurggghh I felt really rough, headachey and tired. This wasn't going to stop me though, not only had I paid for the weeks course but I didnt want to miss it, I loved it so much!

I got to my first session and the heat in that dance studio was unbearable, all the mirrors were steamed up and there was no air but it did seem that I was suffering perhaps more than everyone else? I looked around and people were managing to get through warm-up, I could just about bend down to touch my toes (unusual for me as I was super flexible!) I felt awful. I had some water and I took it easy but it wasn't working, I actually felt very ill so after battling against my body I gave in and told the teachers I had to go home.

As I stepped off the tube at my stop for home I came across funny, I collapsed on the platform. This was just the start of what was to come..

Tuesday morning I could not even lift my head off of my pillow. I couldn't hardly speak and my whole body was aching. Was this the infamous 'Summer Flu' that everyone seemed to get when the weather changed?

My mum got the doctor in to do a home visit. He took my temperature and it was a little high, he checked my throat and my glands and all was fine, nothing swollen. He tried to get me to sit up but it didn't happen, I was too floppy and weak and all my limbs were feeling heavy. '' You probably just have the Summer Virus, it's nothing to worry about.'' I was told to rest and drink fluids..all the usual and ordered NOT to continue the weeks dance course.

Really really disappointed I rang Pineapple up and told them the news and then spent the rest of the next 2 weeks stuck in bed.

When I was finally able to get up and move about I went to my GP and told her that it had taken me just over 2 weeks to even be able to get out of bed and that although I could walk I was still feeling rough. She sent me for blood tests and said that the virus was probably still in my system but she was sure i'd be back to normal soon.

I went back to work, back into the usual routines but things most certainly weren't the same but I still persisted and got on the best I could.

The next few months were not easy. Everyday I would get on London transport and go about my usuals, teaching dance all over London and ending my day instructing at Pineapple and getting home at 11pm.

I was finding my classes and rehearsals difficult. It seemed like such an effort to even get through warm-ups let alone the rest of the lessons. It became embarrassing because I had to keep stopping in the middle of teaching for a breather. I would feel the need to rest more and my legs would get tired very quickly. I started to forget the steps of my own routines that I was teaching and the students would have to remind ME what came next. It would take me longer to recover after each dance session and travelling took its toll on me more than it ever had done before.

Something wasn't right. I knew myself and I knew my body and all the different dance-related aches and pains and these were not any of them.

In October 2004 (3 months after the virus)

I went back to my GP AGAIN and explained that something was not right. I wasn't feeling myself and my energy levels seemed to have permanently depleted. I explained my symptoms, tiredness, quick fatigue after activity, not recovering as fast as usual after my classes, insomnia, and heavy,aching legs.

She checked my last blood test results and said that the virus I had was unknown to them and my white cells were raised considerably indicating a possible infection somewhere. So she wrote out another blood test form and sent me off for my bloods. I was to see her for the results in 2 weeks time.

I carried on teaching but it seemed that I had to limit how much I did in my classes. I found a way of instructing steps and exercises without having to do them, I didn't enjoy it though. It's not the same as doing it is it?!

I had attended a singing audition during the two weeks and had gotten through to perform in a one-off semi-professional West-End production at the Theatre Royal, Drury Lane for charity, so I had rehearsals every Sunday for 8 weeks aswell as my usual schedule. Not clever I know, but I was determined to not let my body get the better of me!! My career was really on the rise and I was getting work in left right and centre and my auditions were becoming more and more successful. This was NOT the time to become sick.

''Your blood tests showed that your white cells are still remarkably raised and your lymphocytes, CK's and ESR's are  all elevated too so I need to keep an eye on you. I will need regular blood tests  from you and appointments to monitor this.I do still however think that you could still have the virus in your system. I think I will also do a check for Glandular fever''.

I didn't know what any of that meant but I just hoped and prayed that they would right themselves.

This went on for at least 9 months, back and forth to the GP, no changes in my results but what had changed was that I had now started to collapse in the middle of my classes and ended up bed-ridden for days. I started missing days off work and really struggled to get through rehearsals for the show.

July 2005,

I taught my last dance class at a primary school in London before the summer holidays, really quite pleased because this gave me my days free to rest and recouporate ready for the new term in September. I also had the West-End Show to concentrate on for the next 2 weeks and I wanted so badly to get through that ok.

I just managed to perform in the show. I dont know how I did it but I did. It was an amazing experience. One of those that you will never ever forget throughout your lifetime but running around backstage and up and down the dressing room corridors and stairs was a killer and by the end of the night I was shattered. Normally I would be in floods of tears after a show finishes and an emotional wreck but this time my body was just screaming for me to get home into my bed and all I could think about was sitting down.

I really knew that from this night on, things were not going to be the same. ..


BLOG 2 'I did it...'

Jun. 26th, 2010 | 04:46 pm
mood: indifferent indifferent


Hi everyone,

Thank you for coming back to read my Blog. I’ve had great responses so far from my intro and I’m so surprised and so happy that already there has been such positive feedback.

I do realise that for those of you who don’t know me may have gotten the impression that I am very intense and blunt from what you read. Honestly, I’m really REALLY not that person, I think it just came across that way because of the topic that I have chosen to share with you all. I’m quite passionate about getting it across as It’s been a big part of my life that has brought me great changes. I have come across a lot of misunderstandings, judgements, discrimination and ignorance during my six years of being ill so I kind of want to wipe it all out and just explain everything. I want to be clear and frank about it all. Doctors and specialists skim around the true hard facts and unless someone really explains what happens I don’t think people who are going through it now as a new thing in their lives will be prepared for what they will be experiencing. I wish I had someone to tell me what to expect when I first became ill.

I warn you that every Blog I post will be long. It’s going to be really hard for me to work out how to tell this story and know when exactly to stop but for now I’m going to tell it how it happened. I hope you all continue to follow me and support this blog.

 I am going to start from beginning, infact I’m going to start this story wayyyyyy before the illness came so that you can all learn about me and who I really am first. This entry is going to be about what I was doing BEFORE the illness struck. Here is my story and how it began..

 12th April 2003

As I stood in the waiting room butterflies enthralled my stomach, fluttering away they accompanied my nervous breathlessness as I I just stood there moving my fingers about and taking deep breaths. I waited to step into that exam room for the final time, this was it.

For 2 years I had been training painstakingly to become a Dance Teacher. Since a child I had always been involved in Performing Arts and being on stage performing was all I ever wanted from life. Strangely I didn’t aspire to be a leading lady, I just wanted to be in the chorus as a member of the cast. Just treading the West End boards in a West End musical was enough for me.

My mum had put me into ballet and tap lessons as soon as I was steady enough on my feet and then got me an agent which amazingly started my career off instantaneously getting me into commercials and modelling work. From then on I got the performing bug and I attended part-time theatre school in the evenings and weekends. Since the age of 5 not only did I grow to love what I was doing but it had also became my saviour throughout my school life, which was nothing other than a living nightmare.

Bullying was on a daily basis. Everyday all day and nothing was being done about it so I needed a way to cope and get through and thank goodness the one thing I had to get me through the day was knowing that in the evening I would be with my friends and doing what I love more than anything else at theatre school.

Being bullied at school shattered any confidence I had but slowly it built up throughout my time in acting and performing lessons. I found my niche and learnt my strengths and weaknesses. By the time I was 16 and ready to leave school I was solid on what I wanted and how I was going to get it. I would leave school, attend a leading stage school, train and then audition in the world of theatre until I landed myself into my dream.

Leaving theatre school at 16 was very hard and very emotional. It had been my life and my social life for so long, my security blanket and the place where I found myself. I felt like I was ready to start my journey but putting that time of my life behind me has been very hard and to this day I miss it terribly.

 I was always told that I would make a great Character actress. I always saw the ‘Character actress’ phrase as a way of saying that you didn’t quite fit into the mould that was required for being in a musical and at first I was paranoid that this was their way of saying I wouldn’t make it into musicals just because I was quite plump and not exactly the perfect looking dancer! But as I grew into my later teens and understood more about character acting I realised that I would make a great character actress.

I seemed to come alive with the character roles and even found the ‘plump’ character roles quite amusing. Those of you who know the Musical ‘fame’ there was a character called ‘Mabel’ who was majoring in Dance but couldn’t quite stick to diets and wasn’t as fit as the other dancers and fell behind in class. She then finds that her talents lie in acting and singing so majors in them instead! I could sooooo relate to that character and was actually chuffed when I got to play her in the amateur production we put on. It made me realise that there was a niche for me in musicals and being a character actress was the way forward.

My last day of theatre school, emotional, sad and heartbreaking. Not only was I to say goodbye to everything I had known growing up but I was then told by my agent (also owner of the theatre school) in a ‘leaving pep talk’ that I would ‘’never be a dancer’’ because of how I looked and that although I could ‘’move very well’’ I should let go of the dancing dream and just reach for an acting career. Don’t get me wrong, I loved acting and I had been fortunate enough to act on television and stage on numerous occasions but it still didn’t fill my core like being in a musical. It seemed that I needed the music and dance numbers aswell to truly make me happy.

Something about musicals moves me, everytime I go to watch one in the Westend I always end up crying. Even to this day I don’t know what it is that gets to me every single time and why it actually is that tears end up rolling down my cheeks and I get shivers and goose pimples. It’s not just one emotion that sweeps through me causing the water works so I just can’t give you a reason why I react like that.

All I can say is that something inside me, deep into my core swells and melts when the orchestra starts up and the opening number begins. I know that I am well and truly jealous of those who are onstage but somehow I don’t think it’s the jealousy that makes me cry, I think it’s the sheer love of theatre that I have. I know that all I want and all I ever wanted was to be up there on stage.

Something within me shifted when she told me ‘’you cant ever be a dancer’’. I was filled with anger and hurt and confusion. I had been told I would make a ‘’great character actress’’. ‘Great character actresses are in musicals and if I can ‘’move well’’ then why should I give up on the dream? It isn’t as if my aim was to be on MTV dancing behind Britney Spears or something. I was realistic with my ambitions, even at 16 I did know that it wasn’t going to be easy auditioning but I was going to do it and being told I couldn’t do something brought out a strength in me that I didn’t know existed. I didn’t cry. Infact I didn’t even reply to her. I just stood there nodded and left quietly. I was going to prove her wrong even if she was to never find out about my success, I would know that I did it.

In 1999 after I left school I studied performing arts for 2 years and excelled in all areas. I didn’t get into any of the big Stage Schools after college but it didn’t deter me. I decided that I would train myself and do it the hard way. I went to Pineapple Dance studios every single day, used all of my inheritance money that my grandma left me in her will and danced the £’s away. I trained and trained and finally got to a good enough standard where I thought I could start auditioning for musicals. I also joined the Pineapple Adults performing arts school on the weekends and got even more training. I loved every second of it. I would get home at 11pm every night exhausted but elated.

It was just like I was going to Stage School everyday. Without fail I would get up, study, run errands and then off to dance classes.

I began auditioning, rejection didn’t actually bother me I just got back up and carried on. I got through to the next stage auditions on a couple of occasions which gave me the indication I was doing something right, so I kept on track.

After about 2 years of all of this I was also training to become a dance teacher. I had found a dance company who trained you and educated you and sent you out to work in schools teaching dance and then when you were ready you would take official exams with a prestigious Dance Examination Board and qualify to the next level. I did this for another year and a half  whilst training at Pineapple AND working in Sainsburys part-time and temping. I did a lot.

Thinking back now I think I did too much, but nothing was going to stop me. From 18 until I was 21 I was constantly on the go.

On 11th April 2003 I took my final teachers exam. I was ready for it, I had learnt the Anatomy and Physiology sub-certification course and I had learnt all the theory of dance and I was there, ready for this final exam.

''I stood in the waiting room butterflies enthralled my stomach, fluttering away they accompanied my nervous breathlessness as I I just stood there moving my fingers about and taking deep breaths. I waited to step into that exam room for the final time, this was it.''


I passed!

Not only did I pass but I passed with flying colours! ‘Highly Commended’, the best grade you could get and I was so happy. I WAS A QUALIFIED DANCE TEACHER.

I was a dancer and a dance teacher.

I did it. 


I'm sorry Miss Michael...

Jun. 21st, 2010 | 11:20 pm
mood: cranky cranky

''I'm sorry Miss Michael but it seems that you have a disease that just doesn't exist yet..
We are still investigating and researching your condition and i'm afraid there isn't much we can do..''

I just looked at him. So i'm an alien then? I didn't ACTUALLY ask that to his face but I could tell that in his University College London educated brain he was just simply thinking that but didn't know how to professionally and politely put it to me.

I quietly chuckled to myself as the next few words came out of his mouth..it was as if he KNEW my last thought.
''I'm afraid that you are rather..unique. Your case is of great interest to us and we have been in contact with many specialists throughout this country trying to get an insight into your 'condition'. You are one of very few who have this particular and unique form of a myopathy...''.

By 'Myopathy' he means Muscle Disease. Over the years I have become a walking encycopedia of medical terms and conditions. I swear I could become a doctor now after all of the knowledge I have acquired since 2004!

I'm Christie.

I have finally decided to share my experiences of my illnesses with the world. I have juggled with the idea for a while now and since the New Year rang through I felt like 2010 was the year I really wanted to do something with my life. Writing a Blog is ''doing something with your life?'' you may well question, but whilst I may not be saving the third world (not yet anyway) hopefully I can help people with what I am going to write about.
I may be ''one of very few'' with this mysterious muscle disease but there are so so many people who are in my shoes, living with life changing conditions that are debiliating and ''invisible'' and i'm going to break through the silence and frankly be..well...frank about it all. It may be invisible but i'm going to expose it so that all those people suffering can see that they are not alone.

''But you don't look sick'' ''You're looking well'' ''You look fine'' These three comments are so often said to me. Perhaps they are said to make me feel better or to be complimentary. Other times I know they are said through ignorance. When I say ignorance i'm not being rude in the slightest, you see when you have illness that doesn't often have any visible physical symptoms where people can't SEE anything is actually wrong, it is hard for them to understand how it is that you aren't well.

I often joke with my friends saying that sometimes I wish my arm was hanging off or an eyeball was dangling out of my head (sick I know) just so that people could SEE something wrong with me. Even after 6 years of being so unwell and explaining my symptoms, it's still so hard for some people to understand that I may look ok but I really really am not.

Like many people I have good days and I have bad days. I mostly have bad days but I have learnt to just struggle through the constant pain and try my best to get through life and experience life because there's not much else I can do. I refuse to give in and just lay in bed all day being the''sick one''. Don't get me wrong I do feel like staying in bed every morning and just being wrapped in my duvet all day because from the moment I open my eyes, the second I am conscious, I feel pain. I feel pain and I feel aches and unfortunately I know that that's not all I will be feeling during the rest of the day and it is daunting and tiring knowing that this is my life now, every single day, forever BUT I still refuse to BE the illness. I am unwell but the illness does not define me.
It sounds like a boohoo sob story and I guess in a way it is but i'm not doing this for sympathy or pity, I'm going to be writing this Blog so that people can empathise and understand. You often hear people say '' oh i can only imagine how that feels..'', this to me is progress. If I can make someone imagine then I am on my way to helping them understand. Awareness is key for me. It's time that people understood about 'invisible illnesses'.

For many people this blog will allow them to relate and not feel alone, for others i'm hoping it will be a learning curb, for me..well I guess it's just hoping I can inform and help. Even if one person reads this and says ''Oh My God..I feel that, I can't believe im not alone'' then I know that my work here is a success.

Tomorrow I will start from the beginning, the very beginning. It will be long and it will be descriptive, perhaps even graphic but if I had to experience it then  I want you to too.