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Guest Blog~open letter by a teenager with ME

Posted in Personal Blog

Before my youngest daughter became ill with ME I knew very little about the illness apart from what I gleaned when I was a teenager. There was a girl, who lived with her mother locally, who had this vague illness, she didn’t attend school, her mum home educated her and when we visited she was always very quiet, gentle and very pale. Often she left us with her mother as she had to go and rest. They didn’t live there long and I often wonder what happened to her and how she managed back in the days with no iphone, no laptops or internet, only 3 or was it 4 by then TV channels to choose from (no such thing as sky, tivo or netflix then). She must have felt so lonely and isolated.

Anyway ~ my youngest daughter became ill 5 years ago and that’s when my ME education kicked in and boy was it a learning curve, then 2½ years after that my middle daughter became ill with ME too. Since the first diagnosis 5 years ago I have come into contact with a number of sufferers and families or friends of sufferers which has helped me feel less alone when floundering and wondering how to address new symptoms or issues arising as a direct result of the illness.

As well as adults I am also in touch with many teenagers and young people with ME, one of those young people has asked to write a guest blog as they wish to remain anonymous.

So here it is, a young persons open letter to whomever wishes to read it about their experience with ME…..

Every m.e sufferer will have a different story to tell. Some peoples stories have so much to them, yet others are just a diagnosis with a few things changed in their lifestyle. It’s hard to understand why there would be an illness, where you look the same, you act the same… but you can’t do things the same as other people. It almost seems a bit silly and a bit hard to understand- but then again, not a lot of people do understand.

If I could go back to 2009 I would do so much more while I had the freedom, but it’s totally unexpected. When I was 9 I wouldn’t have had a clue that it was my last year before I was totally restricted to everything I do.

It basically started in 2009 when I had swine flu. Since I got swine flu I had never been 100% ‘right’. I was in and out of school constantly with sore throats, and I caught 10 cases of tonsillitis throughout the year of 2010- I personally think I got a reputation for it with the teachers, so they would never take me seriously if I were to say that I had a sore throat.

In late November 2010, I got a particularly bad case of tonsillitis and the flu. I went through two courses of anti-biotic but didn’t seem to be recovering. My throat still felt as if I had swallowed razor blades, so it really was just a waiting game. I was always telling my friends that I’d be back but after 3 months (still bed bound) it really wasn’t any use, and we knew something wasn’t right.

I got my diagnoses in early January, 2011. I was tested previously for glandular fever and also had a few other tests which all came back negative. We didn’t have a clue about the illness, and the doctors didn’t seem to know much either. At the time, it was believed to be very much like fibromyalgia, which has similar symptoms but can be helped with exercise. Anyone who has m.e, you know that it is not helped with exercise; unfortunately I learnt this the hard way.

I saw a physiotherapist on February 4th (my birthday) who told me to walk to 4 lamp posts each day and to keep forcing myself to walk faster and faster, basically to race the previous time it took me.  This only messed up my back and pushed my m.e back, I felt barely alive- when I saw her she said the back pain was due to one leg being a little longer than the other; which caused my back posture to be wonky. Unfortunately, she failed to tell me that really my muscles were so tight after being over-worked; it was pulling my spine to one side.

After the physiotherapist not helping in the slightest, I saw an occupational therapist and also started hydrotherapy. I hated hydrotherapy, but we were still on the fact exercise will help.

My m.e was pretty much a constant trial throughout the years 2011 and 2012. I tried hospital school and going to an m.e group, but it only made me even weaker than I was before. Eventually I stopped everything, and I started seeing an osteopath; this got me into big trouble with my therapists and they made me choose between them, obviously I chose the osteopath because she actually helped.  We tried other little things that we heard supposedly help, like qi-gong, homeopathy, dieticians etc. But most of them just wasted my time.

I couldn’t see my friends for more than half an hour, we tried energy supplements and it was a miracle when I could manage to have a sleepover again. I tried going into school for an hour on Fridays but it didn’t last long because I fell asleep during that hour, and then was wiped out for the week before I went back to it, it only lasted about 3 weeks before we decided I should probably come out altogether.

Skipping forward to September 2011, I managed a week of secondary school from 8-10:30, but it basically just drained every drop of energy that I ever had (Oh and I got a puppy that I saved up for!) Seeing my friends in school was extremely difficult for me, I’d feel jealous, angry and upset. I was adamant to get back into school, but typically I knew I couldn’t manage it at all.

In 2012, I was threatened to be taken into hospital for 2 weeks to have tests ran on me and to be forced into hospital school, I started fainting so I had an ECG done a few times. By now we basically knew everything that I had health wise: hypermobility, orthostatic intolerance, chronic back pain, restless leg syndrome, and my body was also very hyper active. It got so bad I needed to use a wheelchair and hardly moved from bed.

Towards the end of 2012, I had a mini seizure. This was due to my body’s exhaustion; I had an EEG, 24 hour ECG, blood tests and some other things done.

2013 and 2014 have just been a complete trial and error cycle for me, I’m now starting to get better as I have joined Nisai virtual academy and have plans for the future. It’s heart breaking that I’ll never be able to experience things like secondary school and prom, but I’m so pleased with how far I have come after 5 years. The experience has been hard, because the whole education and health system have been so tough to deal with. We’ve had to pay ridiculous prices to see private doctors just to get simple things that people refuse to give us.

Over all, dealing with my m.e now is something I have learnt to do- although there are out-comes such as social anxiety and avoidance issues; I’m hoping everything will be resolved in a matter of years. For anyone who is struggling with m.e themselves, you may be able to relate to my issues and you’ll understand everything can’t be put down in words. Hopefully 2015 will be a better year for all of us.
My m.e symptoms consist of:
  • Brain fog (hard to concentrate, forgetfulness, can’t pronounce things etc.)
  • Swollen glands, 
  • light sensitivity, 
  • noise sensitivity, 
  • headaches, 
  • rash, 
  • irritated sinuses, 
  • stomach and muscle pains, 
  • congested lymph, 
  • dry eyes, 
  • fatigue, 
  • tiredness and MUCH more.
It is because of sufferers like this that I am participating in the March DeChox, it is spear headed by the British Heart Foundation as I am raising funds for them as a thank you for the care they provided helping my husband recover from his heart attacks. However I am also doing it to raise funds for Invest in ME Research to help support important biomedical research projects looking into ways to treat this illness which currently has not treatment or cure
If you wish to sponsor me you can by clicking the link of your choice below, or via text using the text codes as shown. If you are unable to donate you can support me by sharing this blog and raising awareness about this illness.

Donations towards British Heart Foundation can be given here;

Donations towards Invest in ME Research can be given here;

Thank You

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