Still here and awareness

Hello 🙂

I am still here! I just started reading a lot and then the rest of my order came yesterday so I’ve been busy reading :’) Aaanyway. I’m here to write a serious post. About my illness (M.E) which I gave you a link to in the first post. Well, here is the story of how it all started and how I got diagnosed. If you don’t want to read my life story just skip to the end where I have written facts and told you to go look up videos.

This week is M.E Awareness Week. It is the chance we sufferers – or family of the sufferers, as some of us are too poorly – to raise awareness. I have done some awareness back in 2009, my mom went on the local radio station for me to raise awareness and a lady came to our house to record me telling people listening to Women’s Hour on Radio 4 about it. It was very tiring and at that time I was still bedbound, only just managing to get weight back on.

It all started when I was about 8. It was the summer holidays and I’d been doing swimming (A love of mine). Unfortunately, every time I came home from it I was so tired I would just flop onto my bed without cleaning off the chlorine because I was so tired and my legs hurt so much I couldn’t really walk. A few days later (I’m guessing) I started getting bruises randomly. Now, for the record I’m very clumsy but these weren’t “Oops, I walked into the dresser” sort of thing, they were blood bruises. At the point I couldn’t move or do anything really so was stuck in bed for the whole summer holidays. It was very worrying to my family so my mom took me to the doctors (somehow) to get me checked out because they thought I could have leukemia. Luckily, it didn’t show up in the blood tests but they still couldn’t tell what was wrong with me so back I went to bed.

I don’t really remember much about that, it’s just things that my mom and dad have told me. I do remember the bruises, and feeling such bad pain in my legs but nothing else. Guess I blocked it from my memory. I must’ve got a bit better because by September I was in Year 4, although not properly feeling myself. Not a lot happened, I kept getting laryngitis but that was normal for me, I always got that or chest infections. We moved house and that wore me out a bit but it layed still.

In Year 5 I was off school with a wheat intolerance for a few weeks, that wasn’t exactly helpful to my health. That knocked me back a bit but I still kept on at school, although I did have to stop from doing the school play. Year 6 came along and we went on school camp, that was very tiring and took me a while to recover from that (No relapse though) then SATs came along and it all went downhill from there. I was having Fridays off because I was tired after doing the four days of school. That was extremely annoying to explain to the kids in my year. They were all “We get tired too, but we don’t get Fridays off!”. I bit my tongue though, didn’t want to get in trouble. Then I was having weeks off school because I was so tired, I didn’t have the energy to eat or go downstairs or anything. I felt a little better after that so went started doing part-time (either mornings or afternoons). Again this was annoying for two reasons, I had to quit the school play again and had to explain to the kids that I was poorly. They were like “You don’t look ill, you look well!” Sadly, they mistook the flushed cheeks for feeling well.

I managed my last day at school which is a great memory to have. 🙂 Not so great that I was in bed for the whole of the summer holidays again though. This time it was even worse than when I was 8. My eating slowly decreased, although I kept topped up on water. One night I didn’t feel very well (as apposed to feeling so tired) so my mom and dad came and sit with me. I then started shaking uncontrollably so while mom called the nurse at the hospital place dad sat with me to try to calm me down. I had to go the hospital (with a urine sample. Ughhh) at around midnight (fun adventure). I was freezing cold but boiling hot and by the time the doctor saw me he said to limit the layers and just keep cool. He also said that there was nothing to show why I was feeling so poorly. *sigh*

The next day I tried to nap as much as I could, between really wanting to see my friends and watching the olympics. I spent much of those weeks in bed trying to feel better (didn’t work). Eventually I felt a little better so started the search with my mom to find school uniform and everything else I needed for secondary school. My mom gave me a not to hand in to the teachers there to say that if I needed to go home because I felt too tired/too ill to call her. I managed pretty okay the first few lessons. I didn’t eat my snack though, because it didn’t look cool eating grapes whilst walking to class, in my opinion. I did regret that though when it came to lunch time. The hallway smelt of school dinners so I went into the main hall to try to eat (after seeing the school nurse to give me Gaviscon) but felt really too ill. In the end I went back to the school nurse crying because I just wanted to be at home. They told me to “eat your grapes and get some fresh air. Find your friends as well”. That didn’t help but I agreed (after getting over the fact I felt like a 5-year-old). By the end of the day I was so tired and felt so sick I tried my hardest not to cry in front of my friend, whose mom kindly decided to drive me back home. I got in the door, sat on the stairs and cried because I felt so rough. My mom helped me up the stairs and at 5 I finally ate my lunch.

Next day I had a half day and felt much better for that. Unfortunately the next week I was back in hospital because I was shaking again. This time I had to have painkillers and have my blood taken. They referred me to the children’s hospital and told me to have vitamin C because I didn’t have enough in me. I gradually got worse and couldn’t make my appointment to the children’s hospital as I was completely bedbound, only managing to crawl out of my bed to use the bathroom. I was losing so much weight because I couldn’t stomach the thought of food and in the end my paediatrician referred me to a CFS place. A lovely man came out and told me he suspected I had M.E (He called it CFS but M.E is right because I don’t just experience fatigue). I really couldn’t handle this diagnosis for two reasons. 1. I was 11. 2. I had never heard of this illness before. So I ended up very depressed because I couldn’t do anything and didn’t think I would enjoy Christmas at all. So several things happened that I don’t want to mention and Christmas came a long. It was actually the best Christmas I had ever had (Even if I had to open presents slowly and rest a lot afterwards). I started to feel better and in 2009 I started making very small progress. I was slowly putting weight back on (Which felt amazing, I was no longer able to see every bone in my body!) and started to get out of my bed more. The biggest thing was getting my rabbits (One has now died 😦 ) and they helped ease my depression because they made me super happy. 🙂

As I had something to do everyday (Whether it was going out to them or mom bringing them inside) I started building my strength back up. In the summer I was well enough to sit outside for most of the day, with music to keep me company. The vitamin D was flowing back inside and I was finally able to start going in the car (for the first time in months!). Then the people tutoring me decided it would help me to go back to school . . . That’s where it all went to shit again. They pushed me too far and I relapsed. Badly. 2010 was a bit crappy, I spent months trying to recover and it took forever.

2011 was when I started to improve slowly, the medicine the doctors had prescribed to me back in ’08 were helping and I could start going out for walks (unaided!). I even started seeing new people I had met! 😀 All of this though, went a bit poop in September when I got a stomach bug and relapsed. I kept waking up in the night, either just because I felt too poorly or was going to be ill. This still happens now, even though I’m not actually ill in the night. It is very frustrating but I am now starting to show signs of a little bit of improvement. I am still severely affected and stay in my pajamas – and my room – a lot of the time. If I do manage to go outside I can’t do it again for days, or even weeks. I am a lot better than some people I know who are severely affected but it affects everyone differently.

Throughout all of this AYME was a great help to me, especially knowing that there were other people in the same position as me. I met my best friend through there and it’s been amazing. 🙂 There have been many downs but there have been ups as well. I may not be able to return to school again but I try to catch up by doing worksheets or work books.

This is my story of my ongoing battle with M.E. There are 250,000+ people in the UK alone who are affected with this illness. It doesn’t help that the government hasn’t been kind to its existence in the past, or that “professionals” say it’s all in our head. If it was in our heads, we would have “made” ourselves be well, wouldn’t we? It’s not exactly a choice.

Thank you for reading this – very lengthy – post. There are videos on YouTube that you can watch, there are articles around on news sites as well. I’m sure if you buy the local newspaper you’ll be able to (possibly) find some articles in there as well.

I’m off to go rest for the next few days after that, emotionally and physically exhausted.
Jess x



23 thoughts on “Still here and awareness

  1. What a courageous post. You are such a brave and inspiring young woman, you cope with M.E. with such dignity and determination, when it would be so easy to give up. Your uncle Ol and I couldn’t be more proud of you. Talking about your illness the way you have done shows maturity way beyond your years and i am positive anyone who reads your post will learn from and be inspired by you.

  2. Thank you for being so open and sharing your story. It is a horrible condition to have (I know this from personal experience.) Made all the worse when the medical profession are sceptical and so in turn the general public. It’s great you’re raising awareness in this way. Take care of yourself and I hope it’s not to long before you are recovered. Because I really do believe you can x

  3. Hi Jess. What a great post – I have ME and know how much energy that must have taken. It is a tough thing to cope with and I applaude all that you are managing to do. Take care and keep smiling! C

  4. Such a brave post Jess. It must have taken all of your strength and determination to write this post. The way you live with ME is such an example to us all. We are so proud of you. Love you lots. Nanny and Grampy. Xxxxx

  5. Thank you young lady for sharing this. It has been very helpful to hear your story. There are similarities to my sons symptoms and to hear you have these does confirm M.E. My friend Judith who is a friend of your mums sent me the link. I don’t do the blog thing so this may not get to you. Bless you.

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  10. Thank you for sharing your experiences, Jess 😀 well written and offering so much hope and courage. I now know so much more about ME than I did a few minutes ago. The vid was amazing, it is great to know of the brave and beautiful individuals who are striving onward with a smile 🙂 ❤

    Cheering you on,


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