My Story

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 paediatrician 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 going to school and about life as usual despite the symptoms. And so it continued with no improvement which was very disheartening. I went back to the paediatrician 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 degrees 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, I 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. I did a form of Graded Exercise Therapy under a physiotherapist, which made me worse, the physiotherapist discharged me after a few weeks because she could she it was doing more harm than good.

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  until 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 along with some troubles with my neighbours I crashed. I was bed bound for 3 weeks, and had the flu as well. I couldn’t stand light or noise, struggled to move without intense pain and slept lots. Things improved in the months that followed, frustratingly slowly but it was improvement all the same.

In 2014, life sent one of the biggest challenges I’d faced to that point; the loss of my Gramps, just a few weeks before my first Open University exam. It was at that point everything felt too much, I came incredibly close to giving up on my degree because the loss affected my health quite badly. If it hadn’t been for some amazing, encouraging friends and family I wouldn’t have continued with my degree and the exam. Again, slowly through the second half of that year my health improved, little by little.

The beginning of 2015 was another tough one, this is when the worst of the fainting spells started. The day before our first family weekend away in I can’t remember how long it was, I spent a lot of the morning on the kitchen floor unable to get up again without fainting, and then lying on the sofa, still struggling to sit up at all without feeling really faint. I could barely walk the next day when we travelled to Skegness and our holiday apartment at Butlins, but I managed to enjoy myself, even if the bulk of my time was spent inside the apartment rather than exploring. Our family suffered another loss shortly after, this time my Nan, I was already pretty unwell by this point and there wasn’t much further left for me to slip down. Again, friends and family rallied round and little by little as the year went on I improved again. Yes I still needed a wheelchair when getting out of the house, and I couldn’t get out very often but it was still improvement.

2016 and 17 continued in much the same way, there were family funerals, continued difficulties with neighbours, the self-imposed pressure of studying for my degree, and a lot of ups and downs with my health. There were signs of slow improvement in some aspects, but in general it stayed about the same level.

And so it seemed 2018 would go in the same way, however with the beast from the east making my joint pain so much worse winter was a tough time. I went to the doctors and was referred to the local Chronic Fatigue Service. I was wary, I knew Graded Exercise Therapy was the recommended treatment, I also knew that 12-13 years ago that had made me worse. But I went with an open mind, still hoping that perhaps I’d get some help and support, I wasn’t prepared when I was told I should be doing more and I shouldn’t be using the aids I was using. How could they not understand that I wanted to be doing so much more than I was but that doing so made me worse?

I went back to my GP, and told him, whilst almost in tears, what had happened at that appointment and he sprung into action. New pain medication to enable to sleep better at night, a referral to wheelchair services because my wheelchair had recently broken, and a referral to a specialist cardiologist in London about my fainting spells. Sure, things remained at around the same level for the rest of 2018 but with the new medication I was managing a bit better and the promise of an appointment with a specialist provided hope.

And so we come to 2019, it’s not even halfway through the year and although my health has remained pretty much the same, with a worsening of some symptoms, I already have so much hope for what the next few months might bring! I’ve had my appointment with the specialist cardiologist, he listened to me, and wasn’t only interested in what I had been referred to him about, but also the rest of my symptoms! It is safe to say in the 14 years I’ve now been ill I can’t remember having a more positive hospital appointment. Everyday tasks are still a struggle, but I now have a bit of hope that some of my symptoms will be treated and as such there is a possibility other things will improve too.

That’s not to say right now I’m not still badly affected by M.E., I am.

• I need help with getting changed into my pyjamas, but thankfully most days I manage to dress myself in the mornings.

• I can’t always 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.

• I always have a slight headache but it varies depending on the day. The same can be said for a sore throat.

• 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.

But at least for the time being, I have a little bit more hope that things might change.