Saturday, 12 May 2012

ME and Fibromyalgia Awareness Day

Today is the International awareness day for two devastating diseases - ME (myalgic encephalomyelitis) and Fibromyalgia.

I have ME, I have had it for 14 years and counting. 

I have a chronic illness, I am disabled - I have recently been told (by the Disability and Employment Officer who is going to help me return to work) that I need to say that more - I am disabled. I have never been afraid to use the term, its just I tend to refer to my chronic illness rather than my disability.

ME took away the opportunities of youth. While I should have been going out, having fun, experimenting, I was trapped in a body on fire with pain, barely able to stay awake. When I did manage to do something 'normal' what people didn't see was me afterwards behind closed doors in tears. 

I was the subject of village gossip (I wasn't really ill, I was taking advantage, I was lazy...). Even the system that was meant to help me didnt understand and I was branded a lair at a benefits tribunal.

No one would lie about having ME.

Those early years I was pretty much bed bound. I was fiercely independent and would manage personal care (well what teenager really wants their Mum to help them to the loo) but this would leave me unable to do anything else. I was lucky I had my parents to look after me. If I had been alone then I would either still be bed bound or I simply wouldn't have survived.

My life is a balancing act. I have regained the ability to do things to an extent. Because of my traumatic dealings with the benefits system I decided my only chance at life was to find a job that would be flexible, I knew that wouldn't be possible with mediocre A level results. I never thought that they would get me into Uni but they did because I also had something else - life experience (it took 2 years to regain enough health to go to uni). Who knew that ME would be life experience. I was able to study because I didnt do normal student things. I couldn't go into Halls (I wouldn't have survived). I didn't go out and the key was being upfront with the Uni - I went as a disabled student. I went to a uni that taught modular course so holidays were my time nothing was carried over the terms. The uni had terms - set blocks and I was able to pick my subjects - we had the core ones but others we could pick and choose meaning I could build my timetable. It was hard, I had to change half of my degree because I could cope and I missed bits (ok I missed pretty much the whole of my last term) but I got through. 

I went into full time work. Now I have coped with full time work. I could cope again but I am realising at what cost. I have been living to work rather than working to live. 

I have companion conditions to ME. I also have IBS and I suffer from Raynauds. In addition I have PCOS and various joint issues, and a chronic back problem (I believe they class it as mechanical failure now) yep I am falling apart. I realise that my body has been on a downward decline because I have been abusing it, not giving it time to repair properly, and because I have been trying to do too much. 

I thought I knew how to deal with my ME and I did, somethings I did right, somethings not so right. But what I haven't taken into account is changes over time and re-learning how to deal with things. I havent really been listening to my body - its taken some pretty serious chest infections, paramedics picking me off of the floor, being barely able to walk and a serious episode of anxiety to make me listen. 

I was really lucky to have been given the opportunity to attend a back and pain management course and I learnt loads about pain and pain management. But I also learnt that most of it I already knew I just didnt have confidence in my knowledge. 

So what is ME?

This is information on a leaflet called explaining ME to people that I have got from the ME Association.

  • ME is a disabling illness although the visible signs and restrictions that people normally associate with being disabled may not always be obvious. Some people with ME often look well
  • ME can be characterised by severe symptoms that can be made worse by minimal physical or mental exertion
  • The severity and symptoms of ME varies from person to person
  • ME can vary for day to day and even throughout the day. It can, on occasion, vary quite suddenly - from near normal health to feeling very ill and exhausted
  • Sometimes a persons health can deteriorate quite rapidly, leading to complete exhaustion
  • The onset of other symptoms can come on just as suddenly.
These are just some of the symptoms I have:

  • Chronic fatigue - most of the time
  • Pain in my muscles - most of the time
  • Pain in my nerves - most of the time
  • Muscle spasms - some of the time
  • Cognitive dysfunction - all the time
  • Dizziness and balance problems - some of the time
  • Headaches (including migraines)  - all the time
  • Sensitivity to loud noise - all the time
  • Sensitivity to bright lights - all the time
  • Pins and needles - some of the time
  • Sensitivity to smells - some of the time
  • Hypersomnia - some of the time
  • Insomnia - some of the time
  • Poor quality sleep - some of the time
  • Unrefreshing sleep - most of the time
  • Cold hands and feet - all the time (I have raynauds)
  • Sore throats - most of the time
  • Enlarges glands - some of the time
  • Allergies to drugs - all the time 
  • Allergies to chemicals - all the time
  • IBS - all the time
  • Nausea and sickness - most of the time
  • Eye problems (dry eye) - most of the time (summer) some of the time (winter)
I am also intolerant to sunlight and possibly UV light - but its hard to get doctors to understand that strong sunlight makes me sleepy and the after effects of being outside makes me feel like I have a low grade fever and really unwell, as its worse during the summer I believe I have a UV sensitivity. 

The list would have read a little differently 14 years ago - pretty much everything would have been - all the time.

There are more symptoms that I could add.

To find out more about ME click here or google there has recently been a good newspaper article read it here

I am one of the lucky ones - while I will not recover I am better than I was I have a chance at life. Please spare a thought for those who are trapped in their bodies - drowning in a sea of pain. I had a glimpse of that world and I am terrified of going back. Its pain that I would not wish on anyone.

ME is real.
ME is not in my mind.
ME needs to be taken seriously.
ME needs proper research.
ME needs understanding not scorn.

1 comment:

  1. Oh Bless you! I know what it's like to have an illness that is real but people don't think it exists - Bulimia. This, however, is a very tiny little thing compared to your troubles and I fought it and won. I wish you all the best with your courageous fight and if I could magic you free of pain I would do! Virtual hugs from Carrad xxx


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