Monday, 4 May 2015

Day 1 - My Story

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Day 1 - My Story

Edit: This was a shortened (thank god) version of when & how I got ME, but it ended up being a little longer. Firstly, I'd like to tell you what ME is. ME is a multi-system disease, affecting not only the neurological system, but also the immune, musculoskeletal, endocrine and cardiovascular system. It has many different symptoms (some of which will be covered in tomorrows post...) and a range of severities. 

So, to make this as interesting as possible I've produced a little timeline of my life and marked key events relating to my ME so you can see the pattern which has formed.


Timeline

1994 - I was born. A happy healthy baby. From then on I developed well as a child, enjoying school, dancing at weekends and barely ever getting ill with anything.


2002 - I became ill with what we think was a virus, and had to take 7 weeks off school to recover. Also, I just started to train to become a professional dancer. I was put on pointe aged 8 and worked myself hard. At my peak when I was training I would wake up at 5am and do an hour/hour and a half ballet practise before school. I would get home and do another hours practise, or do a 2h private lesson. Then, on Saturdays, I would help train younger dancers and have 2 private lessons, resulting in 7h constant training. I was also very active at this point, being a cross country runner, playing football and doing extra athletics. I was always on the go. But, I started to dip in the winter time and had to take a few weeks off dancing. But I soon picked up again.


November 2008 - Until now things were going fine. I was in high school, still dancing (but deciding not to train professionally) and managing ok. I went to my friends party one night in November and I started feeling really sick so went home. From then on, all my symptoms went downhill and never came back up again. 

2008 continued... It started with anxiety, I was having 4 hour panic attacks at least once a day, which exhausted me. I was too tired to attend school, my attendance dropped and got to the point where they said they would take mum to court if I didn't go in. I started getting tired. Not the usual tired. The tired where your body feels like lead and you're adamant you're about to die. I started crawling up the stairs. I couldn't eat. I stopped everything. I lay in my room day on day doing nothing but thinking I was going to die. And the horrible thing was, I didn't care. At least I wouldn't feel this horrible, be in pain, anxious to a horrible level, depressed and not knowing what was wrong. I eventually got referred to the hospital who immediately went down the depression route (which is pretty common in ME). Yes, I had terrible depression and crippling anxiety, but that was because I had no idea what was happening to me or how to fix it. Also, they refused to listen to me until my weight was at a reasonable level, putting it down to an eating disorder, which infact was anxiety and my ME combined.

*No pictures as I was in a bad state and didn't know taking pictures at this point would have been good for ME awarness raising...*

November 2009 - After a year of counselling and investigations, I was diagnosed with ME. I kind of knew I already had it, as 2 others in my year group had just been diagnosed, but it still was a hard hit. We got given a leaflet, and said she'd see me in 6 months. That was it. There was no help available bar a local service (which were a godsend!), no-one knew how to treat it and no cure. At this point my weight had hit a critical level too. I became very poorly but no-one knew what to do with me. I don't have any photos from when I was at my lowest, both weight wise and health wise, but this one was taken just before I took another dip. Note: I started using a wheelchair almost as soon as my diagnosis as I couldn't walk far.


April 2011 - Up until now things had been quite stable. I needed my wheelchair a lot, my weight was low, my panic attacks were bad, but I could still get out and enjoy doing little things. Up until April where I experienced my first episode of paralysis. Both my arms went into paralysis and I didn't get the feeling back in one of them for a week. This left me in a terrible state. Now, I was reliant on my family to wash me, brush my teeth, dress me, and prop me up.

*No pictures, as I was too poorly to be holding a camera or being photographed*

2013 - Things had been relatively stable, the usual boom and busts. I then developed a lot of complications from ME. I was blue lighted to hospital numerous times and was a regular visitor in a&e. I suffered with internal bleeding which the cause was never fully found, as I'm still getting investigations. Because of this I got a lot of secondary illness' like deuodenitis, a hiatus hernia, gastritis and IBS. The problems with my digestive system continued to deteriorate.



2014 - Start of the year I got diagnosed with EDS. Easter time was just amazing. I'd finally started to pick up, but I went a bit crazy. I couldn't walk far, but it improved, and I still needed my wheelchair a lot. I couldn't go out every day or attend college regularly. But I felt alive. I felt like there was hope and I was recovering. At my best I was doing my dance teaching qualification and teaching for 3 hours a week. I went to visit my friends and I started to live a semi-independant life.


September 2014 - 'ALL GOOD THINGS COME TO AN END'. Correct in this case, my lovely time feeling stable stopped. I had to give up my major dance teaching which literally broke my heart. I then had to give up college. And the list continues, I missed out on holidays, seeing friends, days out... I dipped the most at about March 2015. I was sleeping 20h+ a day, 7 days a week. I couldn't eat, struggled to even sit up and spent a lot of my time in darkness.



Now - Good on you if you've got this far reading it. My relapse is stabilising. I can do 1h activity most days. I'm still in my wheelchair, but I am a lot better at pacing myself out. I'm missing out on a lot of things, and have to be very careful with what I do now, but there is a little glimpse of light as I thought I was going back to square 1. 

Here are two pictures, taken recently. What you see depends on what kind of day I'm having. And even though sometime I look well, I might not be so good when you see me in person!



This is just a little glimpse, surprisingly. I had a lot of bad points and a few good points inbetween. I haven't gone into much detail, but this is a rough timeline of how my ME has been from my diagnosis to 6 and a half years later.

I need a lie down. Kate x



2 comments :

  1. Great to see your staying positive. Its scary how all too common your story is about how it started, sounds just like me if you swap ballet for football (because no one would want to see me doing that! Haha)

    Never give up :)

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    Replies
    1. Sorry to hear you have ME too! I used to play football, not going to lie I was pretty rubbish ;) Hope you're as well as possible <3

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