Saturday, 10 December 2016

The lost me

What a difference a year makes 😥

I think back to this time last year.  I was working 13hour shifts in an ICU!! My old nurses back was sore and I was exhausted (I was still coming to terms with my Fibromyalgia diagnosis), but I was getting through my days (with Bee Pollen which is amazing stuff) and pain killers. I used to spend the days before and after resting in bed, I truly thought I was bad then.  Little did I realise that 12 months on I would be so severely disabled by my illness that I can only get out of bed for a few hours a day. My trips out of the house restricted to doctors and hospitals.

Last year I was able to get ready for not only Christmas, but also my son's birthday in January.  I even baked him a multi layer rainbow cake shaped like a dinosaur!! Pah! The thought of it makes me go back and check my pictures to check it was real!! 
This simple fact is actually enough to bring me to tears. The lost me.
My son will not be getting a special cake this year. I know i know its not the end of the world but I'd only just discovered my love for, and skill at, baking. Another thing that has been stolen.
I try to remind myself that he really doesn't care about cake. As long as he can play, sing, jump and dance he will be happy.....But still. Mummy guilt is agonisingly crippling!

My condition has got worse and worse in the last 3 months. I now am stuck in my bed for 20 hours a day. Unable to walk without crutches or more often now not at all but in a wheelchair.

This is what it is like to live with debilitating Fibromyalgia.

You will, I'm sure, meet people that do not seem as badly affected.  It is  true that there are varying degrees, fibro is like a chameleon.
Take a moment though, think they are most probably wearing a mask, hiding their pain and suffering from you.

Even I wear a mask. I put a smile on my face as I cry and scream inside. I try and laugh and enjoy my family. My mask is steadily slipping. My friends tell me to let it drop. Give myself a break. Its not that easy though. Who wants to admit defeat??

There will always be people who just don't GET it.
"But you don't look sick" will follow me to my grave I'd say.
Even those who should know better just don't care enough to find out the truth.

My partner is my carer and my sons carer but people still look at us and say "why isn't he working" we both look young and healthy.
They would be foolish to say such things to my face however. I staunchly protect him. He is my family and I would truly be lost without him.
I CANNOT CARE FOR MYSELF. I am 42 and cannot care for myself.
Ask yourself why anyone would want to put that on?? Who would chose this life???

My hope is for answers soon for myself and others like me.
Please if you know someone with chronic pain take a moment to look beyond the mask.  Try and learn about their condition so you can understand better.  Share this blog with them or with all your friends. We need to raise awareness.

Thanks for reading and gentle hugs to all.

The Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to. Being sick is expensive, especially when it means you have to stop anyone in your house from earning 😥 so I thank you in advance xxxx

Tuesday, 6 December 2016

Cannot get worse...surely!!???

Just when you think you're at rock bottom, Fibromyalgia decides, nope, you can take some MORE!!!

Cue FLARE!!!

If you know someone with FM you might hear them speak of flares, flaring etc. Please don't dismiss this as any minor thing.

So me. I'm already pretty much stuck in bed due to pain, I have been fighting though. I try get downstairs once a day (its the getting back up that's the kicker!), I sit on my exercise ball, I also do leg and hip exercises in bed.
My pain is evil and I have had moments where I do wonder how I can carry on. But I do. I'm a Mum, its my job.

That's before the F@#&ING FLARE!! Excuse my French.

So my darling boy brings home a little virus from somewhere. Runny noses all around. He's grand though, still running around like a nutter.

Me though?? Ohhh nooo. Jo gets to experience the special amped up version thanks to dear old FM. That's it. Jo gets to feel like this wee cold is the full on Flu.
Headache, muscle ache (this is on top of the bone and joint pain, yay! Not!), sore throat, temp fluctuations blah blah blah.

But an added bonus, is the Skin Flare.

OK, so, you have all been sunburned at some point? Or had a burn off something? Picture that, imagine that pain. The deep soreness.

Now imagine it ALL OVER YOUR BODY

I'm lying here, my PJ's hurting my skin. I made the mistake of scratching an itch...I could still feel the extra deep pain from that 5 minutes later (no joke, I timed it. 6 mins 16 to be exact).

This is on TOP of every other fibro symptom I and my fellow Fibro Warriors deal with every single day!!

So if you know someone with FM. Please please take a moment to see if you can help them at any point but especially if they are unwell or tell you they are flaring. Its no small thing.

Bring on the medical marijuana I say!!! (Well done guys and gals for getting the bill so far!!)
For now, I am going to put some CBD to a true test......

Once again. Thank you for reading.

Please Please share folks. Let's raise awareness!

Also the Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to.

Gentle hugs to all 💜💜💜💜💜