Here in the UK, it was CFS/ME and Fibromyalgia awareness day on Friday 12th May.
I really wanted to write something on my Facebook wall but frankly I didn’t know what to say, and most ironically I was actually too ill that day to even pick up my iPad!
In the early hours of Saturday morning I still couldn’t sleep and I still didn’t know what to write. I really wanted to honour the day and those whom like me struggle every day with this illness. And as I thought about why I was struggling to think of some inspirational point to make others aware of this illness, I realised the reason I couldn’t put finger to keyboard was because I was frightened to!
I was frightened of what my Facebook friends may think and I was embarrassed that my illness was ‘not bad enough’. And compared to the battles of other friends, and also of some of my friends children, I’ve really got off lightly. Why on earth when compared to others should I publicly moan and whinge about how ill I am?
And before you think I’m a Saint, I’m really not. There have been too many times I’ve written a heart felt message on FB to describe how awful I feel and then regretted it. Now of course, I know I can delete these messages which I frequently do!
All I seem to do these days is to talk to my friends and family about how ill I feel because it has unfortunately become my world, and I hate it!
I would even go as far as to say that I have felt ashamed at myself as to how much I complain. Why can’t I be one of those noble people whom suffer in silence!
Anyway, back to the subject matter……
I feel very saddened that there are so many ‘awareness’ days out there. It breaks my heart that our society seems to have to have awareness days. Shouldn’t every day be an awareness day of every kind??
Of course, there are various reasons why these days exist and not all are related to health. Some are to raise money for research, some are to make us aware of the cruelty to people and animals, some are to educate us that loving someone of the same sex is okay, and some even birthed the vote for women!
But I think mostly they exist because rightly or wrongly, people need to be heard and remembered.
And it’s these examples that have made me realise that I do not need to feel ashamed or embarrassed in raising awareness of my particular illness because without such days breakthroughs may not happen.
So, in my endeavour to raise awareness for CFS/ME and Fibromyalgia, I am going to tell you about today. Why? Because today was a really really good day!
Today, I got up early around 11am. I walked to the bedroom door without shuffling and wobbling. My head felt clear and I felt refreshed after falling asleep about 3am that morning. “This feels good” I thought, “and better still, I’ve got some energy”. “Woo hoo!”
I went down stairs at a fair pace not even needing to lean on the bannister. I made myself some toast and coffee, and then sat in the sitting room to watch a tv programme.
Still feeling ‘quite good’, I decided perhaps I could do a few chores. I sorted the washing out, cleaned up the kitchen. Changed the rubbish bin. Put away some cups and glasses that had been sitting in the utility room for weeks. And, the piste de la resistance, I finally charged the new BT phones which I’d bought off amazon about 3 months ago! This made me so happy (yes, I know it’s sad, but go with it)!
I then proceeded upstairs, legs a bit stiffer this time and back was starting to hurt but I was determined……….to change the duvet!
I then managed to have a shower and wash my hair at about 1.30. I’ve kept it very short so it only takes a few minutes to dry. I then got dressed, took down the said duvet to pop in the washing machine. I even texted my husband to tell him I’ve got some energy……..to walk the dog!😉
Then I thought “what next”? That’s when I heard a little whisper, “don’t do too much, have a rest”.
Reluctantly, I went back into the sitting room and sat down with another coffee. (I know, 2 coffees, so shoot me!) I decided to catch up on Eastenders. “This is so good” I thought, I’m having a really good day.
Then BOOM! Half way through Eastenders my plug came loose from the socket and the energy started to fade. “Don’t panic ” I thought, “it just means it’s bedtime. So what if it’s 2.45!
So, I grabbed hold of the bannister and very slowly climbed the stairs in to the bedroom where I was faced with an unmade bed. “Bugger” I thought, and proceeded to climb on wrapping a bare duvet around me.
Two hours later, I felt tired but okay enough to make dinner. Another achievement on my ‘good day’. This is the second one I’ve cooked in about 6 weeks. The family were happy with their fabulous meal of sausage, chips and peas. ‘Gorgeous’, my hubby said! (I am married to the kindest man in the world!).
After dinner, I thought I could manage a short walk so we went for a short stroll around the block. I held my hubby’s arm so a) he can drag me forward and b) he can stop me from falling into the hedge!
I smiled as we walked around as this was the sixth time I’d walked outside in the past month, so I didn’t even mind when the OAP’s over took us!
I know…….I told you it was a good day!
Much love! 😘