I’m just the girl who’s stuck in the house
Never seeming to leave to be out and about
The neighbours never see me, when I’m ill in bed
They just see a shadow at the window overhead
Looking out, wishing I could be out there
Knowing that being in bed is all I can bear
This is not how any life should be
It feels like I’ve lost a part of me
One day I’ll find that part again
Once I’ve recovered from this ill pain
I know I’ve gained from being ill
A strength that comes from this bitter pill
For now I’m just the girl who’s stuck in the house
Far too exhausted to do anything else
I’ll make the best of what I have
It’s better than focusing on all I’ve lost.
Things haven’t exactly been easy going recently; I’ve succumbed to yet another virus. Which (inevitably) has caused yet another setback in my health. But I’m still fighting.
Going through this rough patch a song that helped me in my first year of having M.E. came into my head. And it’s stuck there like a mantra again. McFly’s ‘I’ll Be OK’ was released in August 2005 about three months after I was diagnosed with this cruel illness. Back then I was (and still am) a big McFly fan, but I was also scared, confused, angry…to be told at 12 that you have a chronic disabling illness, to see everything you’d come to know as ‘normal’ life slip away from you as this illness progressed and the symptoms got worse, to slowly but surely lose contact with almost all your friends…I couldn’t help but ask the question of ‘Why Me?’.
That might sound selfish but it is what went through my mind as I watched the life I knew slip away. I must have been awful to live with at that time, I can remember jumping down people’s throats for seemingly nothing (but to be it seemed a big thing to me), bursting into tears at the slightest ‘normal’ activity I was no longer able to do. At one stage during that ‘journey’ I honestly thought I’d be better off dead (this led to my parents putting all medications under lock and key). But I came to realise my life wasn’t over, yes it wasn’t how I’d expected things to be but I could still do some things. And I would be OK.
This song by McFly came out at a low point in my life and the lyrics, despite not actually having anything to do with the situation I was facing, somehow made an impact and the chorus or at least part of it became my motto:
“Just try a little harder
Try your best to make it
Through the day,
Oh just tell yourself
Ah, I’ll be OK”
To this day I still live by that motto. Things have never seemed quite as bad as they did back then, even though at times over the years I’ve been more ill than I was then. I now know things can get better, and I will be OK. Perhaps not in the same sense as I thought I would be when I first heard this song when I was 12; back then telling myself I’d be OK meant I’d fully recover and be back living a ‘normal’ healthy life. Nowadays I’m more realistic, being OK now means being able to get on with the seemingly easy everyday tasks some people take for granted. My definition of what OK means all depends on how I am at the time when I tell myself I’ll be OK. But whatever the circumstance I am basically telling myself that I can and will survive this and see better days coming.
I can’t explain exactly why this song struck such a chord with me, maybe it was the timing of it’s release in relation to my illness, maybe it’s the lyrics, maybe it’s just because it’s by one of my favourite bands or perhaps it’s a combination of all that and more. All I really know is it’s a song that has stuck with me through the years and helped me get through some rather tough times with this chronic illness. To this day when things get tough I’ll listen to this song, or it will unwittingly come into my mind and instantly I feel more hopeful about what the future might hold. So should any of McFly be reading this, (highly unlikely I know but still…) I’d like to say thank you for creating a song that has had such a positive impact on my life with chronic illness. You don’t know how much of a difference it has made.
Does anyone else have a song that has had a similar effect on their life? I’d love to hear your stories, as always feel free to comment below or drop me a tweet @ALifeWithinME or a post on the Facebook Page!
This post has taken me a while to write and publish, longer than I had hoped it would. You see unfortunately for this blogger, my internet has been playing up and I’ve been lucky to load a website. Heck it still is playing up and this may not even post by the time I’ve finished, but we’re giving it a go.
Back to what I originally intended to post…
I have been overwhelmed by the support I received for my birthday celebrations. I would like to say a MASSIVE THANK YOU to everyone who sent me birthday wishes, cards, presents and of course to all of you who donated to my JustGiving page! You made it possible not just for me to reach my £100 target but to surpass it! THANK YOU SO MUCH!!! Each of you added to my happiness during my birthday celebrations. And I’m sure your donations will make a difference to Invest in ME’s efforts to find the cause and a cure for ME.
Also a big thank you to those who shared photos of celebrations to the Facebook page and used the hashtag #ClaresBirthdayThursday on Twitter!
I had a quiet birthday, resting most of the day before seeing most of my family in the evening. Of course the only logical M.E. attire was a pretty dress with slipper boots!
My Birthday Outfit of Pretty Dress and Slipper Boots
We all consumed lots of birthday cake lovingly made by my Dad! I was very lucky in that he made me two birthday cakes – one coffee and one chocolate!
My two birthday cakes!
My JustGiving page remains open as I have some offline donations to add. And my birthday celebrations are continuing this week despite an energy slump! So if you still want to donate and continue my birthday celebrations feel free too!
Today’s The Day! I’m another year older. No doubt to the rest of you today will just be another day, but for me I hope to be celebrating my birthday with my family. My birthday celebrations will be drawn out over a week or so to minimise the impact on my health. Besides it’s better than having just one day of fun!!
I’ve been thinking it would be fun if I could think up a way you could join in my birthday celebrations from wherever you are. So how about posting a photo of you doing something to celebrate with me to A Life Within An Illness’ Facebook page or on Twitter or Instagram using the hashtag #ClaresBirthdayThursday You could even tweet it to @ALifeWithinME
The photo could be you with a slice of cake, just a smile with your thumbs up or with you raising your glass in celebration whatever you want it to be. Hopefully I’ll be able to collate them into a blog post after my birthday to say thank you for celebrating with me. Who’s up for it?
Of course the other way you can help me celebrate is by ‘buying me a drink’ or whatever you wish through my JustGiving page. All money raised from these ‘drinks’, ‘cakes’ and other virtual presents goes to Invest in ME. It’s my way of doing a little something to help raise money for biomedical research into ME. You can donate online here: https://www.justgiving.com/Clare-Wood22/ Or by texting:
Text GIVW93 £2, £5 or £10 to 70070 e.g. GIVW93 £5
Anyway I’m off to enjoy my birthday! No doubt I shall blog again sometime soon!! P.S. Don’t worry I’m not really up this early! This post was written a few days in advanced and scheduled to post today.
