Well I can’t say a lot has changed since the last time I blogged! Things have improved slightly – I’m no longer as sensitive to light. Noise sensitivity is still pretty bad tho. I am finding it a lot harder to walk even around the house, and getting dizzy incredibly easily – the past few days it’s been a struggle to sit up. But we’re slowly improving again now.
Study wise I somehow managed 93% on my second CMA and 83% on my second TMA. Amazing considering a lot of the studying was done whilst incredibly ill. I’m now working hard on TMA03 but it’s really taking it out of me and the workload is proving a struggle.
It’s ME Awareness Week!!
Now for those of you who aren’t aware this week (6-12th May 2013) is ME Awareness Week. So I thought I might fill you in on my background and the daily struggle I have. Everyone with ME is affected differently and this is my personal story with the symptoms I suffer from on a daily basis.
I was 12 years old, in my first term of secondary school when I got a sickness bug. I spent a week off and then returned to school. But I was struggling – I had a sore throat, headache, all my muscles and joints ached and I tired very easily. My parents put this down to the after effects of the sickness virus and the fact it was coming towards the end of term, it had been a big change going from primary school to secondary school!
After the Christmas break I returned to school as normal for one week, before getting sinusitis and being off for two weeks. From then on the difficulties came. The symptoms I had been getting before the Christmas break were now a lot worse and every morning there would be tears because I didn’t want to go to school feeling as I did. My parents took me to the doctor who couldn’t find anything physically wrong with me and told me I needed to go to school. It was suggested I was being bullied – which was totally untrue, in fact for once in my life I wasn’t being bullied but being accepted for who I was.
This continued for a month or two, me being pushed and pushing myself into school although I would do my work alone in the special needs room to save walking around. The doctor eventually referred me to a pediatrician who diagnosed me with Post Viral Fatigue Syndrome. They said I would be better within a month which to me was such a relief. But I was to carry on with going to school etc. So it all continued with no improvement which was very disheartening. I went back to the pediatrician a month later who couldn’t understand why I wasn’t better! Because of the joint pain I was referred to a Rheumatologist.
On Friday 13th May 2005 I was diagnosed with Myalgic Encephalomyelitis after lots of blood tests (too many for someone who has a phobia of blood AND needles!) But at least I had a diagnosis – Someone actually believed I was ill! The sense of relief that brought me was unbelievable. From then on I got help from the school – I was supposed to do half days but that turned out to be impossible so home tutoring was provided.
By this point I was virtually bed bound, well sofa bound. I would get up come down the stairs and lie on the sofa. I had considerable pain all over my body but the worst of it was in my legs. I had a constant headache and sore throat with varying degree of severity and it was a struggle to eat – I would feel hungry, my parents would make a lovely meal, I’d take a few mouthfuls and be full or too tired to eat any more. I would only move from the sofa to use the bathroom, had to have help getting dressed and showered – my independence was gone!
From 2005 – 2009 I stayed much like that, sometimes improving so I could sit up more and then relapsing again. Education didn’t help matters as I was pushed to do 5 one hour lessons a week, 5 GCSEs and at one point go into school for a lesson. In the end my parents put their foot down and I did just one GCSE which was still a struggle but I managed to do it.
From June 2009 – October 2010 I took a year out really. I did 2 classes at a local adult education centre in web design. And improved greatly! To the point where I could walk, go out occasionally and even though I still tired easily and had aches it was much better than it had been.
In October 2010 I started studying with the Open University, and although it was challenging I managed to stay quite well for til 2012. But a few factors then made me get worse again – I was unable to get the rest I needed when I needed it and pushed myself when I shouldn’t have. This resulted in me suffering a relapse but I continued to study.
At the end of February 2013 after a severe throat infection, allergy rash which had kept me from sleeping, pushing myself to do too much and some troubles with my neighbours I crashed. I was bed bound for 3 weeks, had the flu as well. I couldn’t stand light or noise, struggled to move without intense pain and slept lots.
I have now improved but am still badly affected.
- I need help with getting dressed and showering again.
- I can’t grip a glass so have to use mugs and even those have to be quite light or else I spill it!
- I am still sensitive to light and noise but not to the same severity. Saying that even a rustling crisp packet as someone opens it is too loud for me at times!
- Sitting up can be challenging as I get dizzy and feel faint very easily. Some days I struggle to sit up at all other days I can sit up for short periods. I have the same trouble when standing.
- Standing and walking is challenging and a real struggle at times. Stairs are even more so, I often ‘bottom shuffle’ down as it feels safer. Going up my parents often have a hand on my back to keep me steady.
- Muscle weakness is a real feature and I often find I can’t do simple things like open bottles, some doors (if they have catches on) etc.
- Joint and muscle pain is bad, ordinary painkillers take the edge off it on good days but have absolutely no effect on a bad day.
- Sometimes I cannot bear anything touching my skin as it’s so sensitive, it hurts!
- I always have a slight headache but it varies depending on the day. The same can be said for a sore throat.
- I manage an hour of study spread over about 2 sometimes 3 hours and spend the rest of the day resting.
- I can’t control my body temperature, although it can be hot outside I can be frozen under a duvet!
- I can’t always sleep and when I do it’s often unrefreshing – I wake up feeling like I haven’t slept!
- Then there’s the brain fog, poor memory, not being able to find the right word for things.
- And of course there’s the unremitting fatigue and the simplest of things leaving me needing a rest.
This is just my story. There are thousands of sufferers of this illness who will have similar stories if not worse. I am one of the lucky ones who hasn’t suffered paralysis, needing tube feeding or been hospitalized.
Yet there are still many who do not believe that this illness is REAL. They believe it is all in our minds and that we CHOOSE to live like this. I don’t know who would even consider that!! They don’t know how much we WISH we could lead a normal life!!
On which note I shall leave you with a link to an article by Sonia Poulton on M.E. written especially for M.E. Awareness Week 2013. http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html
And wow this has become a long post!! It’s been written over a number of days and now I feel it is ready to be published!! Feel free to comment or tweet me @SmilingClare to let me know your thoughts.
I hope this has helped give you an insight into life with M.E. If you want more information on the illness please see the useful links on the right hand side of this page, or leave a question via the above methods and I will reply when I can.
That’s All For Now Folks!