Here we are again. I would love to say I've been absent because I've been feeling SOOO much better and been out and about having, oh in don't know, a life!!??.....Hahaha yeah right
Nope. I've been in my hole. In my bed, or on a good day, in my recliner downstairs for a couple of hours.
By the way, big thank you for my crutches Mum & Dad, it means I can hobble around a bit more 💜💜 They are these brilliant elbow crutches, no weight goes through your wrists like normal ones.
Oh and thanks to all who have donated to my GoFundMe page (link at bottom of the page), I have now got a perching stool that will let me sit at the kitchen counter to even just make a cup of tea, it is priceless. Thanks to Rachel also for the recliner. He may not be pretty but he has increased my quality of life a little 💜💜 I will have to do a separate thank you post I think on my GoFundMe.
So anyway, I was "chatting" with my fibro besties yesterday. That is one massively positive thing about living with a chronic illness, you develop AMAZING online friends. there is usually a facebook group (or 10) for everything!!
We were talking about all sorts, as you do when you are stuck in bed. Thank Feck for WiFi! (I chat as long as my thumb allows, then proceed to tap with each finger until I've run out of fingers and my hands shout at me lol). This blog is written over the course of a few hours to allow for rests.
Namely what a f@*+#%g awful time I am having with this thing called Fibromyalgia (FM). That's another thing when every second of every day (no I am NOT exaggerating) is filled with pain. You swear like a sailor!!! I have to make sure I don't do THAT in front of my nearly 3year old!!
So. I had called myself the princess and the pea, then my dear friend points out I should be called the princess and the crumb lol. Thing is though, she's RIGHT!!
When you spend as much time in bed as I do, you eat in bed. You leave crumbs. Oh my good god. Its like lying on broken glass!!! A crease in the sheet? Like a knife. A seam or label on clothes? I think you see where I'm going here.
Its not just in bed though. It's EVERYWHERE!! Sitting down on anything but the double cushion softest seat, OUCH!! You would think I didn't have enough of my own padding in the derrière. I think I spoke about my Allodynia in a previous blog, I think......goddam memory!!! Grrr that's another blog right there.
Anyway, where was I??
Oh yeah. Sensitivity. ( I was going to include a bit about how it affects internal organs but decided to save you all from that 😉)
Sadly it also means that I am sensitive to a lot of medications. Totally random symptoms are either drug related or....you guessed it FIBRO!! This means you actually put up with side effects a lot longer that you should because you yourself label it as "ah sure, its JUST THE FIBRO" FFS!!!
I am continuing my battle with the HSE. Health Service Executive. Or as I think it should be called. The ILL HEALTH, NO SERVICE, EXECUTIVE. Still waiting on OT, I'm too young to be urgent, how nice, still waiting to see if I can get funding for the medication I need. That's not looking hopeful so I am told. Still waiting for my specialist appointments. Waiting for the postman (eeek very exciting but top secret shhh). Waiting for God I would have also said a couple of weeks ago. You know what though!? my mood is a LOT brighter today, no idea why but it makes the world of difference. Long may that last I tell you!!
So from my bed I shall say adieu, tata for now. I am thankful today that I am able to sign off with a smile and not a tear. A victory, albeit a small one.
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 💜💜💜💜💜
http://www.gofundme.com/invisibilityhurts
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