Monday, 12 May 2014

This is M.E

photo source; Sian Wootton
Today is International ME awareness day and although I am dressed like a Princess ( post to follow soon) to help raise money for charity I wanted to show you how far from a fairytale M.E is. The photos above we're taken on Monday after I had received some really lovely news and got over excited, rushing to shout the news. For a short while I could run on adrenalin and push thoughts of M.E aside. Add that to my next door neighbours doing building work and constant hammering. Each blow literally felt as though it was hitting my body. Such is my intolerance to some noises. It literally made me shake and my heart palpitate. I tried to use ear defenders but they just made my head thump, making me nauseous. It affected me that much that I could barely hold up my phone.

M.E what an unfortunate set of letters, because I feel very far from me, who I was before, the me I'd love to get back. I think the following poem by Mama Chill sums this up perfecfly.

photo source; Mama Chill
M.E really is relentless. You very rarely get relief from one symptom or another. It's a bit like constantly feeling as though you have the flu. Until we find an effective treatment all we can do is try and find a good balance of medication for us. This usually means medication that helps combat some fatigue by helping us get better quality sleep and taking strong pain killers everyday. Trying to find a balance between being constantly sleepy or constantly in agony.
The collage below shows a bit of this:

photo source; Sian Wootton
There can be days when you can get out for a hour or so, for me that's using a wheelchair as I can't walk far or stand up for long. Days where you're not too fatigued or in too much pain.Days when you get out for the sake of your sanity. Completely fed up of staring at the same 4 walls. Days where you will put on a mask to try and at least look a bit less sick. 
But with M.E the biggest symptom is Post Exertion Malaise, meaning you will get a big spike in symptoms after exerting yourself. Getting out of the house, even sat in a wheelchair, can make you very ill for days after. Sometimes exertion as simple as going to the bathroom can have just as bad an effect. Leaving you feeling like you have literally been hit by a bus (I used chocolate to demonstrate ;-)). So again you need to find the balance in maintaining good mental health and some 'normality' and not making yourself worse.

photo source; Sian Wootton
And if it's not my body reminding me I'm ill all I need to do is look around me.  My bedside table has a box full of things that I need close by to help relief symptoms or just so I don't have to waste precious energy going searching. 
From baby wipes to keep me cool and fresh to lip balm to help cracked lips.

photo source; Sian Wootton
My room looks like a teenagers. Clothes and other things ( seriously so much paper) everywhere. From when I don't have the energy to put things away or want my Mum to leave me to sleep.

photo source;Sian Wootton

Most of the time I need to drink anything using a straw because I do not have the strength to hold a cup or glass. Or my hands are too shakey. Some of my friends even use toddler beakers, which makes me really sad. I usually take straws with me if I go out. Even to the dentist to help me use the mouthwash. If I forget then my Mum sometimes has to hold the cup for me. This often leads to some sympathetic looks from on on-lookers. If I'm in my wheelchair too then people just think it's part of being disabled but if I'm not then I can get some very funny looks. In the same vain sometimes my parents need to cut my dinner up for me, or even on very bad days I need to be hand fed.  

photo source; Sian Wootton
The biggest sign I'm ill though is that I have a commode next to my bed. It's been there since around this time last year when my M.E became severe and I developed Fibromyalgia too. A painful condition that affects the nerves, causing over sensitivity, the lightest touch or a duvet can feel like it's crushing you. You need extra help because of the pain in your muscles but you can't stand anyone touching you. Even socks with elastic feel like they're strangling your ankles. But I need the commode for really bad days, to help conserve some energy and not walking back and too to the bathroom. Especially as we don't have a downstairs bathroom. Also it's useful in the night in case I was unsteady and fell on my way to the bathroom. It's rather embarrassing and makes me feel like a toddler but just like my wheelchair it's a way to help me adapt to this way of life. The more I can adapt and make things a little easier the more energy I have to focus on getting better.

So these a few things about my life with M.E. This is my normal. It shouldn't be normal. A good friend recently passed away after suffering for 38 years. 38 years of feeling like you've ran a marathon everyday! 

And that's why raising awareness is a key. Raising awareness to get more people knowing the true impact of the illness. To get doctors interested in wanting to find answers to this medical mystery. Many medical students don't even get taught about it. To show the seriousness to get more NHS funding, not just psychological 'how to deal with it' methods. To research why people develop the illness and what changes in the brain and body occur. That way a treatment can be found. That way a cure can be found. That way people can 'live' again.

You can donate to any of the Princesses on this just giving page https://www.justgiving.com/teams/MEprincesses I'm on there too, and that money will go directly to Invest in ME for biomedical research purposes to help find those all important answers. 

This is our chance at hope
Sian x

P.S ANOTHER POST COMING VERY SHORTLY, SEE THE OTHER SIDE OF M.E




3 comments:

  1. Sian, this post really highlights the truth about M.E, and you are so brave for showing what it really looks like to have CFS and live with it. I'm so proud of you for all you have done RE princesses, and showing your strength even though you are not strong physically.
    Happy M.E awareness day spoonie sis. love ya loads!

    PS what is the sellotape for? Can't work it out?!

    xx Hayley-Eszti

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    1. Thank you Hayley. We need to make this illness more visible. I'm so amazed by everyones efforts. Never known such a fab and dedicated group. Despite all their struggles. I'm a very tired Princess can hardly keep up with all that's going on.

      The sellotape is for when I send spoonie post. Keep it in there so I don't need to go hunting. Don't worry not taping myself up or anything.

      Look forward to reading your posts. So proud to call you a spoonie sis too. All very brave.

      Xxx

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    2. Sian you have been remarkably honest about your illness in this post - and the pictures really help tell the story too. xx

      Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
      Over 100 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

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