Category: ME Awareness Page 9 of 13

If you’ve been reading my blog from the very beginning you’ll no doubt know that last year I had my hair cut shorter and this was a big deal for me, I blogged about it back then. Well over the past 18 months despite regular trims my hair had grown rather long again. And I loved it. I adore having my hair long, I can’t explain what it is or why but there’s just something about long hair that feels right to me. Whether it’s being able to gather it in my hands, tie it in a pony tail or just run a brush through it I don’t know but I do know I love my hair long.

However despite recent small improvements in my health I’ve been struggling with washing and brushing my long hair. So yesterday despite the fact I love my hair long, I made the decision to have it cut short again. I am pleased with the result and it should be so much easier to manage but I feel like M.E. has won.

I have to battle to do most things. Walking. Writing. Thinking. Showering. Washing my hair. Getting dressed. Brushing my hair. And more. In order to make my life a little easier I have had to let M.E. win this battle – now I shouldn’t find it as hard to wash and brush my hair, which means more energy for other tasks. But it still feels like I’m the one who’s lost out, yet again.

I know this change will make my life easier. I know deep down it was the right thing to do. But I can’t say I like having my hair this short. Don’t get me wrong I don’t hate it, but to be forced to change my hairstyle because I’m unable to physically manage taking care of my current one hurts. It’s not really a choice about hairstyles anymore, it’s a choice that could potentially allow me to pace myself better. And if I can pace myself better, there’s more chance of my health improving. That’s a chance I can’t pass up on. 

So I may have lost this battle but I’m certainly not going to let M.E. win the war!

For the most part I’m happy with my life, despite how limited it is. But there are times when I realise just how limited my life is compared with how it could be. And this realisation gets me down.

If you think about it I live in a bit of a bubble, an ME bubble. If I stick to my routine at home, within my limits, I manage my life quite well. But if I step outside that bubble, it can burst. It’s then that the realisation of how limited my life actually is gets me down. Sometimes it doesn’t take me stepping outside the bubble for it to burst, it can be seeing what other people my age are managing to achieve, where they are in life, what they’re doing etc. I don’t begrudge them for it, I’m happy for them but I am a little bit jealous. If it wasn’t for ME I’d be doing similar things but instead I’m living in my little bubble.

I recently pushed my limits, stepped outside my bubble, by slowly walking round a shop on crutches. My bubble burst. This was too much for my body to handle and I payed for it with a few days of worse health. And it hit me. My life is so incredibly limited. It’s the school summer holidays now and that means I probably won’t be venturing into the city centre for the forseeable future as it will be too busy. If we go out to the shops by car, I can’t walk around the shops even with my crutches. I need to use my wheelchair. I had already accepted this, prior to the decision of walking around a shop on my crutches. But I only decided to do it because I felt ready. I felt my bubble could expand and this would be manageable. Yet I was wrong. And that, that is what takes some adjusting to. To accept that I misread my body, and pushed myself too far, bursting my bubble. The freedom of walking slowly with crutches around a store has been snatched away from me again. The fact is it’s not worth the few days of horribleness that follows when using the wheelchair would allow me to continue my ‘normal’ routine the following days; the days wouldn’t be written off.

When my bubble has burst there’s only one thing I can do; pick myself up, brush myself off and start rebuilding my bubble afresh. I can’t deny a few tears may be shed, a few anrgy words said or written down but ultimately I pick myself up, and get on with repairing my burst bubble. Recreating a routine that I can manage. Focusing on all the things I can do and am doing. Not what other people can do or are doing. Through the years my bubble has become tougher, more difficult to burst. But it’s far from puncture proof. I’m not that strong. I don’t think anyone is. Realising that some part of your life has been taken from you by a chronic illness isn’t something you can just sweep under the carpet and ignore. You’re forced to deal with it and the changes it brings. Ultimately chronic illness becomes a way of life.

I mentioned in my previous post about Severe ME Awareness, that I aimed to be taking part in two campaigns I’d come across which involved taking a photo of myself and posting it on social media. I’m happy to announce that despite a challenging week, which saw me unable to use my right arm for a few days due to muscle weakness, I have managed it! So I thought I’d share my photos and the links to the campaigns again in case you want to find out more.

The Black Dress Selfie

This campaign asks that you wear black dress on August 8th. Something I have managed to do today. Even better it happened to be a Little Black Dress just like the one in the info graphic! If you follow me on Instagram you’ll have seen a slightly different photo to this one, owing to the fact Instagram wouldn’t let me use this one due to its size. More information on this campaign can be found here: http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html

 

Black Dress Selfie Info Graphic

 

Stop The ME Cover Up

This campaign requested particpants covered up partially or completely with a message promoting awareness of severe ME. I took this photo earlier in the week (pacing myself you see!) but coming up with the message was a little more difficult. I’m hoping what I came up with does the job. More information on this campaign is available at: http://sallyjustme.blogspot.co.uk/2014/08/living-death.html and http://stonebird.co.uk/archive/aug8/

My photo for the Stop the ME Cover Up campaign.

Please let me know if you’ve played your part in any of these campaigns, or any others you’ve come across! I’d love to see your photos too.

I recently came across a couple of campaigns to help raise awareness of severe M.E. They both struck a chord with me and I plan on participating. But first I thought I’d share them with you in the hope you will also participate and help us raise awareness of severe M.E. Both campaigns are easy to participate in and won’t take much time or energy; but you will need a camera and a social media account!

The first campaign I came across is The Black Dress Selfie.

The idea here is that on August 8th you wear black dress, posting a photo of you in the outfit on social media along with the Black Dress Selfie info graphic, provided below. If you’re female and have a Little Black Dress, all the better. But if you’re male or don’t own a black dress, don’t worry just get a little creative; in my view ‘Black Dress’ could also mean wearing a black outfit.

More information on this campaign is available here: http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html

The second campaign I’ve come across is Stop The ME Cover Up

The idea of this campaign is to raise awareness of how ignored severe M.E. is. So for this one participants are asked to take a photo of themselves totally or partially covered up, with a message promoting awareness of severe M.E. This can be something simple such as the name of the campaign; Stop The ME Cover Up, a phrase which describes the current level of awareness (“Out of sight, Out of mind” springs to my mind!) or something more revealing about the affects of severe M.E.

More information on this campaign can be found on these sites:
http://sallyjustme.blogspot.co.uk/2014/08/living-death.html
http://stonebird.co.uk/archive/aug8/

I plan on participating in both campaigns on August 8th, I hope to post my photos both on here and on all my social media accounts. I’ll be using the hash tags #BlackDressSelfie #BlackDressDayForSevereME #StopTheMECoverUp along with my usual #ME #MEAwareness and #SevereMEAwareness hash tags. I’d love to see your selfies for this cause too! Let me know if you get involved!!