I thought I would share my journey with you all. Looking back at it now it has been a bit of a roller coaster ride that does not seem to be finishing yet!
I have always needed more sleep than most people I know and been susceptible to every infection going. I always put this down to my asthma and the high levels of prednisolone that I was frequently taking to control it.
By May of 2008, I had started to fall apart. I was sleeping 14 hours a day and struggling to hold down my job as a HLTA (Higher Level Teaching Assistant), as well as going to Uni where I was doing a degree in educational studies. I was also caring for my family. I had flue at the beginning of April and never picked up (you know the real flue that leaves you in bed and a total wreck). By the end of May, I was a nightmare to live with - I snapped at everyone, had a permanent sore throat and lost my voice. I was frequently in tears thinking I was going mad as everything seemed so out of control (being a bit of a control freak this was not good).
My fantastic GP did depression scales and told me that I was not mad but probably ill and signed me off work for a fortnight and ordered loads of blood tests which was to be the first of many.
I went back to work still very tired and soon was worse than before. I struggled on till July having days off to sleep. The pain in my legs and back I put down to sciatica and I tried to work through it. Work kept asking me questions and asking what they could do to help! The only problem was they didn't really sound like they wanted to help. What they really wanted was the old me back who did everything and never complained and always smiled, something that had disappeared by this point. I didn't know how to help myself and started to feel very threatened and insecure at work. This was made worse by the fact that every time I came back to work after being off I had to have return to work interviews where my attendance was discussed. I remember feeling threatened as all the management team sat there and wanted to know why it was only at 50%! If I had known the answer then I would have given up trying to fight. I was moved out of the year group I had been working with and where I felt secure in order to support a failing teacher (which was a joke as I could not even support myself).
The GP referred me to and ENT specialist and to a Dr from the medical team. A the end of July, he started suggesting that maybe it was PVFS. Loads more blood tests showed my LFT (liver function tests) had gone through the roof because of the amount of paracetamol I was taking to try and control my temperature as well as the pain in my legs and back (although I never exceeded the stated dose).
The ENT Dr said I had visible muscle weakness in my vocal cords and discharged me. The medical Dr told me I had CFS and that it will take at least two years for any improvement. He suggested I made some major life changes as the job I had would only cause me more issues as you are at constant risk of infection. At this point I was still hoping that the 6 weeks summer holiday would be enough rest for me to recover!
While all this is happening, my calcium levels dropped and I found a breast lump at the beginning of September. By October, I was in hospital having them removed, (they were benign). The surgery knocked me down even further and by now the fatigue was such that I was sleeping 18 hours a day and finding it hard to do even the basic things like bath and dress. The amazing thing though was the discomfort from the surgery was nothing in comparison to the back and hip pain. This is when I started to really worry.
By the end of November, I find I cannot walk without using the furniture in the house and have increasing pain in my legs whenever I do walk or stand. On standing, the pain was also around the abdominal muscles. The weakness caused by the fatigue and the pain slows my walk to a shuffle and I have a permanent tremor that is exacerbated by exercise.
Over Christmas, I ended up using crutches to get about and collapsed after a short trip to Morrison's with the parents. The collapse was caused by sheer exhaustion. The muscle pain and weakness now affects my arms and a load more tests are being done. I am referred to a neurologist and the M.E clinic.
Work started to threaten me with disciplinary action as I have not returned to work and I am still handing in sick notes. They referred me to occupational health but they use this as a threat. I started to worry as I’m still at Uni but in order to continue, I need permission from work and my GP as the Uni are starting to get a bit concerned about my ability to continue due to my illness.
I wake up in the night having had the most vivid nightmares and can be so hot I can’t bare the duvet on me even if it's below zero outside and the heating is off! if I am having a really bad night, the IBS kicks in as well. Oh the joy of it. Makes me wonder if it would be easier to have my bed in the bathroom!
After my visit to occupational health and the medical assessment, work backed off. They gave me permission to carry on at Uni as did my GP and the M.E consultant who felt that this would be a good thing for my mental health. I started to use a mobility scooter if I go out and can sit to help prepare dinner. I went to university one day a fortnight and was prepared for the three days it took to recover. The struggle and the fight I had with the Uni to complete my degree was worth is and I graduated with a 2:1 in July 09.
In the July of 09, work informed me that they would be seeking to dismiss me on the grounds of ill health which they have still yet to do. Between then and now, I have had to learn about the benefit system and endure medicals and people questioning me as to the severity of my illness and the reality of it. The difficulty with the system is that the reviews and questions are constant! I hate the way they make you feel guilty for asking for help! My latest struggle is with trying to apply for my ill health pension. I can’t say I hold out much hope but I won’t give up!
Friends have disappeared and new ones have taken their place although I still find myself grieving for what I have lost. For the most part, I accept my life for what it is - severely restricted. I am still undergoing tests and new problems seem to occur every month, I am now glucose intolerant and take diabetes medication, I have hypothyroidism, and recently my liver has started to mess about again so am off for more investigations!
Yesterday I went back to see the M.E consultant and he was surprised by my deterioration over the last two years. Not all of it due to the M.E, as the diagnosis of fibromyalgia has also now been confirmed. I have to say that I feel lucky in some respects because all of the Dr's that I have seen have been fantastic. None have dismissed me, any new symptom is checked out and not just put down to M.E. and most of this is because I have a fantastic GP.
I have learnt to manage my illness to some extent though I can’t say that I pace effectively all the time as life and pacing don't necessarily go hand in hand. Sometimes I choose life and take the payback although it does make me grumpy!
What I do know is that I would not have managed any of this without the love and support of my family. I am lucky that I have a fantastic husband who has never once made me feel bad. The constant company of my dog Google is something I’m forever thankful for and now on good days, we go out on excursions together, both of riding on my mobility scooter!
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