11/05/2014

M.E. Awareness Week: This is M.E.

For the first post for M.E. awareness week I am writing a few little things about myself to with/out M.E. in the style of The Get Up And Go Guru's blog post train. If you're new to this blog you might not know that I have very severe M.E. and Michael is my carer full time so I am writing a post every day of M.E. awareness week centred around getting more notice for this horrible illness. Tomorrow there will be a post about my M.E., what it's like and how it's changed my life. And, if you want to know more here is a link to my M.E. blog page. So, on to today, I'm going to write 5 general things you might not know about me and 5 things to do with M.E.

What is your name and how long have you had M.E./CFS?
I'm Laura and I've had M.E for 4 1/2 years.

Where do you live?
I live in a crappy town called Eastleigh in between the cities of Winchester and Southampton in Hampshire, which is on the South East coast of England.

Age? ( if you're willing to share)
I'm 20, soon to be 21!

Tell us 5 things about you that the people in your life probably don't know (non-illness related).
  • I play the piano, pretty well too. Michael has promised that when we move out (minding space) I can have a piano! A piano!
  • When I was little I used to write plays and try to get my 5 younger brothers and sisters to perform them for our parents. Never. Ever. Worked.
  • I know every single word to Wham's Christma hit 'Last Christmas'. Cringe.
  • I still have a rabbit but I've already named the next two I will get when he's gone; Bramble & Bumble. It stops me thinking about how old my bunny is (his name's Barley).
  • I love sweet corn and will eat it a tin at a time.

Tell us 5 things about you that the people in your life probably don't know about your life with CFS/M.E.
  • I don't remember what it feels like to feel 'well'. Yes, this makes me cry. But, at least I don't know what I'm missing, I won't always be looking for the feeling of well and when it does happen I'll be knocked off my feet.
  • I wear my boyfriends clothes nearly every day, I have my own but when I'm in so much pain it's comforting to have something that reminds you so strongly of the person you're living through the pain for.
  • My legs are the Worst part of my M.E. and some days I want to just saw them off and be done with it. I can't explain the pain, so much so that some days I wish I could give my legs to someone else for an hour, just so they could understand. My doctor won't help me with it but everyone who I speak to thinks it's fibromyalgia.
  • I shout at Michael for no reason sometimes, because I can't work out why I feel so upset due to my stupid muddled M.E. brain. It takes me crying for half an hour for me to work out what's really wrong and then we talk through it. He's so good to me and puts up with a lot.
  • I am a good listener (ooh, the secrets I hold) but I hate it when people start to whinge and moan. Especially after they've done something for the day when I'm stuck in my bed. Appreciate what you have.
What one thing do you think most people wouldn't know about living with M.E./CFS that you'd like them to know?
You don't always feel that tired. M.E. is more centred around all the different symptoms that everyone gets, even not being able to sleep. Everyone's M.E. is different, my Mum says M.E. really does mean 'me' because everyone's illness is unique to them.

What is the most frustrating aspect for you of living with CFS/M.E.?
The way it affects my relationship. It's so hard when you can't do anything for the one you love. Michael doesn't mind but I do. I'm just saving it all up for one huge love explosion. Hmmm, that sounds a little dodgy.

Is there anything you'd like to say before finishing?
M.E. has changed me beyond belief. If I hadn't got I'll and been forced to stop I don't know what mental state I'd be in now.

Done. If you've taken the time to read this then thank you very much! You can also find more of these posts under the hash tag #ThisIsME on Twitter. Thank you to Louise for organising this post, please head to her blog and have a read, she's had M.E. for 21 years now and will probably give a very good insight into what it's like.

2 comments:

  1. Beautiful Laura! Every one of the #ThisIsME posts have brought me to tears. Yours was no exception. The love you have for your boyfriend (and vice versa) is so obvious. When you recover Michael will love that "big love explosion" you're saving up for him (doesn't sound dodgy at all - well, not if you're a romantic like me).

    Speaking of romantic, I, too, know all the words to Last Christmas by Wham. I had all the vinyl Wham singles back in the 80s :-). Thought George Michael was gorgeous!

    Oh, and I love your Mum's spin on ME/CFS - "Everyone's M.E. is different, my Mum says M.E. really does mean 'me' because everyone's illness is unique to them." So accurate!

    Thanks for taking part in #ThisIsME

    I look forward to staying connected!

    Keep Smiling

    Louise

    ReplyDelete
    Replies
    1. I'm so glad you like it :) I've been loving reading your posts about being a parent with M.E. (me and Michael have decided that in a couple of years we're going to try whether or not i'm better), they've been very helpful and i've bookmarked them for future reference.

      My Mum saw Wham in concert in the 80's, and she swears George Michael was singing to her ;)

      You're a very inspirational woman and i hope to keep reading your wise words of wisdom :D

      Laura x

      Delete