Smiling Clare

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!!

There’s no denying actually having a summer and having no university work to do is amazing, but there is a downside to all this heat we’ve had in England. That is; heat and M.E. like many other chronic illnesses, don’t mix too well.

To begin with I found the heat quite nice, my pain levels reduced and I felt a bit better. But once it started reaching 30C it became very draining and my energy levels plummeted. The humidty and changes in air pressure have my pain levels all over the place with storms occurring quite frequently. I know I’m not alone in finding this, and some of my friends have struggled with the weather more so than me. So why am I blogging about it? It’s not that I want to complain, although it would be the typically British thing to do, it’s that I want to make people aware of the impact a significant change in weather can have on someone with M.E.

Now if you’re reading this as a perfectly healthy individual, recall how you feel in 30C temperatures and above. Sluggish? Sticky? Unsure of what to do with yourself? More tired than usual? What do you normally do to alleviate some of these things? Do you shower to relieve the stickiness being hot has created?

Now imagine having M.E. where you live with limited energy levels everyday and have found they’ve dropped even more due to the hot weather. To add to that you’re sticky because of the heat. You normally manage some low energy activities during the day but since you’re energy levels have dropped even further you can’t do as much as you were. So you have to rest. You can’t relieve the stickiness being hot has created by having a shower because you simply don’t have the energy to shower. You’re reminded of just how limited your life has become. Suddenly  summer doesn’t seem quite as nice as it once did.

I never thought I’d be one to say I missed the typical British Summer of temperatures in the mid-teens to low twenties, I always enjoyed the hotter weather. But as I’ve discovered in recent years, the impact on my health is far too great for me to enjoy a very hot summer. So a typical British Summer (minus all the rain perhaps?) would be ideal for me. Instead I’m running on emptier than normal batteries, less spoons or whatever other analogy you can come up with to describe very low energy levels! However that’s not going to stop me making the best of my time off, even if I do end up doing less than I planned.

Growing up I was always told:

“What you want and what you get are two different things”

I never realised how true this saying is. Not until I started living with M.E. Nowadays this saying sums up most of my life. I want to be healthy, lead a normal busy life. Instead I’ve got M.E. which doesn’t care what I want, I have to do what it wants or else.

I’ve already done a post on my reality at 21 and I don’t want this to become a repeat of that. Instead I want this post to be a more positive take on things. The way I try to live my life; focusing on the positives and developing from the negatives. I may not have all I want but I make the most of what I get. Some examples:

• I want an unlimited supply of energy. I get a very limited supply. But that means I prioritise what gets done; sometimes this means anything that can be done wearing pyjamas is done wearing pyjamas!

• I want a normal range of mobility. I get reduced mobility. So any aids I use have to be prettified like a fashion accessory. A patterned walking stick. Coloured parts of my crutches. Pretty cushions for my wheelchair. That kind of thing.

• I want to be completely independent. I get a little independence on my ‘better’ days. Small things can be done independently; thanks to a water dispenser I can make a hot drink myself, foam curlers on my toothbrush handle mean I can clean my teeth, a tangle teaser brush means I can brush my hair. This all varies from day to day but without things like that I’d have to rely on others to do these things and more for me. Independence means a lot to me. One day I’ll be able to walk to the local shop on my own again.

• I want to spend time with a lot of friends. I get to spend a limited time with one friend at a time, generally in a quiet environment. But we always have fun. And then there’s all the wonderful friends I’m in contact with constantly online, despite not having met in person.

Do you see what I mean about what I want and what I get being two different things? My list of wants extends far greater than that, and I’ll grant you there are a few superficial things on that list but most of it, most of it is just everyday things people can do. Things that ME has taken away from me.

But saying that ME has also given me a lot of things. I’ve discovered things about myself I didn’t know. Thanks to ME I’m stronger, wiser, more appreciative and probably more understanding than I would’ve have been without it. I’ve learned I’m strong enough to deal with whatever this illness throws at me, even if I don’t feel it at the time. I do things that seemed impossible at a certain point in my life. I’ve become even more determined than I used to be. Determined not to let this illness beat me!