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Vegan. Ex-makeup artist. CFS/ME sufferer. Cares about human rights, equality, animal rights, conservation/climate change.


Thursday, 12 May 2016

M.E. Awareness Day #UndiesChallenge #MillionsMissing Plus Spoonie Survival Kit

It's that time of year again, when ME/CFS sufferers worldwide take to the internet to raise awareness and funds for this debilitating condition. So I thought I would take a second to tell you about the disease that has well and truly kicked my behind. 

It is usually triggered by a viral infection, from which the sufferer never seems to recover. For me, catching cold sores was the beginning of my decline over several years. When I was diagnosed, in 2008, the fatigue was relentless, but I ignored it as much as I could. I could use willpower to push through it and do things I wanted to do - like go to work, go clubbing, have a day out with friends or family. But each outing left me exhausted and weak the next day. I quickly learned that two days of activity in a row was almost impossible. Over the years my condition has worsened to the point that I had to give up the career that I loved, and I need to be pushed in a wheelchair in order to go anywhere that involves walking more than a short distance. 

No amount of rest will relieve the exhaustion I feel. Having a bath or shower and washing my hair is a monumental undertaking. My memory is atrocious - I constantly forget common words and get lost in a haze of brain fog. Thinking feels like wading through mashed potatoes. If I've been out of bed for longer than usual, my joints and muscles will ache the next day. Sometimes they ache when I haven't done anything. My balance is terrible - I often stumble into door frames or stagger like a drunkard. I was supposed to post this early this morning, but I slept all day today after going out yesterday.

ME sufferers are not looking for sympathy. We want to raise awareness and fund research into this disease, so that soon there may be an effective treatment or cure.

My first step to achieving this is to do the #UndiesChallenge!

That's right, I'm wearing my underwear on the outside like Superman, because I'm a superhero for ME/CFS! I'm donating £10 to the Open Medicine Foundation's END ME/CFS Project at bit.ly/UOTO1 and I nominate YOU to do the same! If you're reading this, you have 24 hours to post your #undieschallenge selfie on social media, donate £10 or whatever you can spare and nominate 3 friends to do the same!

My second step is sending my shoes to London for the #MillionsMissing virtual protest on May 25th! Millions of people, all over the world are 'missing' from the lives they would have lead without this disease. Missing out on their careers, hobbies, trips, relationships they simply do not have the energy or strength for. The London event is on 25th May outside the Department of Health, to protest the lack of funding for ME/CFS research. Of course, as most ME sufferers are too ill to attend, we are sending our shoes to represent us!

Image via In The Now, Youtube.
Here are the shoes I'm sending. Bye shoes!

Click here for information on how to send you shoes for the protest.

Another way to support the protest is to sign and share the petition demanding the US NIH adequately fund ME/CFS. What are you waiting for?

For step three of supporting ME Awareness Day I purchased a special Spoonie Survival Kit for ME Awareness Month, which is May. Spoonie Survival Kits are 'little bags of happiness that contain a range of items that will hopefully help those with long-term conditions to smile, and remind them that they are not alone.' Usually 75% of sales money goes to chronic illness charities, but this special kit has 100% of sales money going to the ME Association

Want to see what I got?

It comes in a blue organza bag, along with a leaflet from The ME Association. Inside the bag, everything is wrapped in blue tissue paper. It's like a present!

The first thing I got is this ME awareness wristband. It says 'It's real. It's physical. It's M.E.' This refers to the widespread belief in the medical community that the disease was 'all in the mind'. This has only begun to change in recent years with new research providing irrefutable evidence of a biological origin. 

The second thing I got is an M.E awareness ribbon from M.E. Support. I immediately put it on my backpack, which I have decorated with other brooches and badges. What do you think?

The third thing I got was this pretty elephant bracelet. It's supposed to act as a reminder to help with the memory problems that come with ME, because 'elephants never forget'!

The fourth thing I got was a spoon charm, referring to the Spoon Theory, and chronic illness sufferers as 'Spoonies'. I think I might put it on my necklace. I'm holding tight to it today, I used most of today's spoons on yesterdays trip out, and even though I was in my wheelchair 99% of the day my hips and thighs are killing me right now!

The next thing I got is this lavender heat bag for aching muscles! You just pop it in the microwave for 30-40 seconds and it soothes ouchies, smelling lovely all the while!

The last thing I got was this ME Association balloon. I love balloons!

What are you doing for ME Awareness Day?

Til Next Time,


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