Monday, 5 May 2014

ME AWARENESS MONTH: Q&A ABOUT LIFE WITH ME





As I've got to know other people affected by ME / CFS, it's become clear that the lack of understanding about our condition is one of our biggest shared frustrations. The illness frequently misunderstood and there are still harmful misconceptions (e.g. it is 'a lazy person illness') floating about which present additional challenges for sufferers on top of managing the symptoms.

This month is International ME Awareness month with ME Awareness Day falling on 12th May.

I thought I'd do my bit to raise awareness through a couple of blog posts.

I'd always intended my blog to be a purely positive space with a focus on sharing specific things that have helped to keep me smiling. I've decided for the next few posts however, in the interest of raising awareness, to adjust my focus slightly to provide a full, honest and undisguised account of what living with the illness is really like (without sounding too moany hopefully!).


To start things off, I've filled out Louise Bibby's ME Awareness Blog Chain Questionnaire:

How long have you had ME / CFS?


I first started experiencing symptoms 18 months ago. These symptoms became progressively worse until I had to stop working 9 months ago.

Where do you live?


Isle of Lewis, Outer Hebrides, Scotland

Age


24



Things about you that people probably don’t know (non-illness-related):


I enter about 20 competitions a week

I would love to run a marathon.

I was once on Channel 5's Brainteaser. With the answer 'Terry Wogan', I won myself enough money to buy a car.

I am trying to teach myself to sew my own clothes.

Things people probably don’t know about your life with ME / CFS:

I now use a wheelchair as I am only able to walk very short distances without feeling dizzy or my legs shaking.

A coffee with friends will leave me in bed for the next few days feeling as if I have a hangover and the flu combined.

I have had to completely re-evaluate what makes me 'me' since no longer being able to do so many of the things I have always loved and have felt defined me.


What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?



How I am feeling varies a great deal from day to day. I'm constantly up and down. If I am out and about doing something it does not mean I am 'better', it probably just means that I have been saving up my limited energy supplies especially. I may well be in bed for days after as a result.





What is the most frustrating aspect for you of living with ME / CFS?


Saying "no" because I know its better for my health when my head is screaming out "LIFE'S TOO SHORT, SAY YES!".



Anything else you’d like to say before finishing?


ME / CFS is not just challenging for the person suffering from it. It's tough for the people around them too. I could not function on a day-to-day basis without help. I need physical support getting out of the bath as I'm prone to faint. I need reminders to take my tablets because my memory is so poor. I'm not able to support myself financially as I cannot work. I need assistance to cook myself a meal due to muscle weakness in my arms. If I get out for a meal, I need someone to read me the menu as there is too much going on around me for me to be able to focus on the writing. Sometimes I need help taking my clothes off at the end of the day as my body is too weak. Every once in a while I need a good old cry and someone to talk to. I'm very lucky as I have a patient caring boyfriend who is willing to do these things for me. I know its not always easy for him though and often wish I was more capable of checking he's alright too.


More information about the Blog Chain can be found here

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7 comments

  1. Such a great post! I wish I'd win enough money to buy myself a car! I hope Awareness day has been kind to you, and I just love the new blog design!
    Lots of hugs :)

    x Hayley-Eszti | www.hayleeszti.blogspot.com

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    1. Thanks so much. The new design has been making me smile whenever I look at it! Hope you're not suffering too much awareness activities and are having a lovely day :)

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  2. Your blog is so beautiful, Faye! This is a brilliant post. I think it's sad that the effects of chronic illness on family and friends are so often overlooked by those without personal experience of illness. I hate seeing the physical strain and emotional upset my illness places on my family, and I have to keep telling myself that I'll be able to look after and look out for them one day, too.

    Hope you're doing as well as possible at the moment :)

    Katharine xx
    http://katharineandme.blogspot.co.uk/

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    1. Thank you so much Katharine. I have to remind myself that if I were in their position I would do the same but its not always easy to shake the guilt. You're one hundred percent right to tell yourself you'll be able to look out for them too one day. You will!
      Hope you're having a good day :)

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  3. Discovered your blog via the ME Awareness Day link-up, and I am so impressed. You write eloquently and seem to have such a mature outlook in a time of great challenge. I'm nearly 20 years older than you are, and am always sad to see younger people suffering because sometimes reliving the great memories of my pre-illness years is all I have to get me through a rough day! But it seems younger people recover more often and more fully -- I had a friend who went from completely bed-bound in her late teens to 100% recovered in her 20s. Sending wishes for good health and happiness your way.

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    1. Thank you so much for your kind comment, it means a lot to me! It is always encouraging to hear of people making a full recovery so thank you for sharing that with me as well. I'm so sorry to hear that you've also been unwell. Sending lots of wishes for health and happiness your way too and thinking of you. Don't give up on that full recovery!

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