Monday, 23 May 2016

Lizzy's perspective: Her journey with ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

I have known Lizzy for about 6 years, when we met we were both severely affected school aged sufferers of ME. Since then I have watched Lizzy become a fantastic advocate for ME and other conditions which she suffers with. I am thankful that Lizzy has allowed me to share her writing on this blog. This was not written for the series but I feel that it fits in well! 

This month is M.E/CFS awareness month. I wanted to do/ write/ make something that would spread awareness and highlight the condition, but I also felt worried about being thought of as attention seeking, depressing, and a number of other names Ive been subject to in the past, which haunt me when I wish to speak out about my condition.

And then I realised, that thats exactly why I need to talk openly about it.

Very few people know what this condition is, let alone how it makes you feel, or how it affects your life. Something so small as a postcard, or regular texts can break the daily silence. This is a chronic illness, which like most other chronic illness get swept aside by more well known illnesses. This is based on my personal experience of the illness, and how it has made me feel. Please know that it varies greatly from person to person. Please help me spread awareness.
Its hard to focus on one aspect of the condition that has affected almost every minute of my everyday for the last 6 years.

I do not blame you if you get to this part and decide to stop reading; because it’s not funny, its not easy reading, and it will take a few minutes of your precious time. I get that, honestly I do.
If I had the choice, I would stop being ill- that takes a lot of my precious time. These are merely a few points, if I were to write everything about this illness and how it has affected me, well, there’d be a book for sure, so I’ll melt it down. (And I’m sorry if any of it doesn't make sense, because as usual I am exhausted writing this.)

The symptoms I struggle with are:
   Extreme exhaustion to the point of collapse;
   Aching muscles;
   Lack of temperature control;
   Poor memory;
   Lack of concentration;
   Sensitivity to light and noise;
   Stomach disturbances;
   Pallor of the skin
   And muscle spasms.

I was a normal early teen, learning to grow in confidence and independence. I was active, and engaged in a lot of outdoor activities. I enjoyed spending time with my family and friends, and I enjoyed school.

When I was 14, things changed. I got ill with a severe gastric-flu; in which I couldn't eat, sit up, or do anything for 3weeks, and lost 2 stone. This flu resulted in exhaustion, which continued on for many months. I gradually returned to school, but they appeared unhappy with my phased return. It was incredibly hard to back up why I couldn't attend full time, because I didn't have any diagnosis.

After getting a lot stronger and more myself again over the summer holidays, I attempted a full time return into year 10. This lasted 2 weeks. I tried to explain to staff members that I couldn't cope, but I was just told GCSE years are difficult, and I should go careful.
It wasn't that I didn't want to do the work, or couldn't be bothered, I was genuinely so exhausted I could barely stay awake.
A few days at school a week became hours, then less and less until within 3 months I had to leave completely.

I was incredibly ill, and though at every half term Id hope that Id be well enough to start back to school, that day never came. I had 10 months out of education, I was housebound, spending most of my days confined to the sofa, or in bed unable to do anything. I became incredibly isolated through the fact I no longer saw anyone from school.
I got diagnosed with M.E/CFS by specialists at a hospital in Bath. It became apparent that there was no quick fix for feeling like this. There was no cure, and very little treatment. The things that seemed to be most needed were patience and determination, and as time went on I found both of those seeping away.

In the next September I started having home tuition 4 times a week, with tutors from the Bristol Hospital Education Service. They were fantastic and incredibly flexible regarding my condition. They would teach me for 15-20minutes, then Id need to have a rest on the sofa, and then if I was well enough we would do a further 10minutes work.

Often the 20-30 minute lessons would wipe me out for the rest of the day but they were enjoyable and the tutors made them fun.
I was still barely able to leave the house, and became anxious and depressed. It is hard to deal with what could have been, or not compare yourself to your friends. Its hard to accept that things are so difficult, and it’s hard to keep going, I mean really hard.
 Every task was like climbing a continuous mountain. Brushing my teeth. Getting to the bathroom. Standing up. Talking. Listening. Looking.

On my worst days I couldn't function at all. I couldn't be propped up in bed, couldn't eat, couldn't have a conversation, couldn't watch TV or listen to audio books, couldn't be left alone at all, and felt incredibly unwell.

In December 2011, we got a wheelchair. I was apprehensive about the prospect of using one, of being seen in one, and of accepting I needed one. I felt guilty, because it wasn't that I couldn't walk at all, it was that I couldn't walk more than a couple of metres. (Often the misconception with wheelchair users is that none of them can stand or walk at all.) It was bittersweet, because at the same time I was also desperate to see the outside world, to feel the breeze on my face, to breathe in the fresh air, to have some connection to normality, even if it was for 5 minutes, and even if those 5 minutes meant spending 2 weeks recovering in bed.

When I think even now, how restricted my life is even with a wheelchair, I am so grateful it makes more things possible, for me and my family.

Over the years I have improved. Very gradually, but I have. And sometimes it feels hard to say that, because I feel like people will expect more of me, and think I’m recovered - Especially because a lot of the time I look completely ‘normal’. The truth is far from that, but small steps are going in the right direction, and I am so glad.

I know this illness has put huge strain on the ones I love the most, on my parents, my brother, my family, my best friends, and I’m sad about that, but also truly thankful to them for standing by me and helping fight my battles, for loving me even at my worst, and for not just leaving me.

I can do more now, leave the house a little more often, or for longer periods of time. I still get my bad days (frequently), (and bad weeks) and still continue the battle of knowing my limits, and accepting that some things cant be done yet, or might have to be done differently. I have met some incredibly fellow sufferers who have become firm friends, and it is nice to know there are other young people who understand.

It feels difficult as you reach each milestone, each birthday, to acknowledge that another year has been stolen by this illness. But it also signifys another year closer to recovery. And whilst some believe that isn't possible, I firmly believe it is. I have so many hopes and dreams and one day I will achieve them. But for now, surviving is achievement enough.

Thank you to everyone who has, and continues to support me. Lizzy x

Thank you to Lizzy for allowing me to share her writing!

No comments :

Post a Comment

Please leave a comment! I love hearing what my readers think and always try to reply to comments. If you have a blog, please link it with your comment and I will have look.