Sunday, 20 November 2016

Why so sensitive!!??

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 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 💜💜💜💜💜

Monday, 7 November 2016

Love hurts

One of these days I'll write an upbeat lighthearted blog post but I'll tell you this straight up it ain't happening anytime soon.

You may hear me talk of pain but it really doesn't mean anything unqualified. So here I'm going to try to describe it a bit better.

Anyone ever had a car crash? You know the feeling the next day when your whole body feels bruised. Let's start with that as your baseline. Then let's have you walk into things repeatedly, knock off things etc so that you are covered in bruises. Now let's have someone give you a dead arm (if you had a brother growing up you will be familiar with this), both arms and legs though. Right. Now fall over and twist your knees and ankles and land hard on your hands so both wrists are badly sprained.
Now do some really bad manual handling and put your back out.
Nearly there. We just need you to sleep awkwardly and get a bad neck.
We will top this off with a banging head like you were on the lash last night, a BIG night out with plenty of mixing of drinks and shots.

Now imagine having ALL of that. TOGETHER. That is just a PART of what its like to live with Fibromyalgia. All day. Every day.

My Allodynia (pain on touch), best way to describe is if someone prods a nasty bruise you have just to "check it hurts",  is so severe that it causes intense pain to just get a simple hug. My partner can't hug me to comfort me, we can't cuddle. My little boy hugs me and I hide (or try to) my pain.
Oh my god don't get me started on the agony when he is crawling over me. All elbows and knees. What can I do!? I can't help it sometimes, I cry out in pain. He's not even 3. He doesn't know why mummy cries so much.

So here I live in agony. In my bed as my pain is so severe and I'm so exhausted it reminds me how I used to feel on nights and not getting any sleep. I can feel a simple crease in the bed sheet. Its like I'm lying on something sharp (always have to check). A tissue is like a stone in my bed. To say I'm not a smiley happy person would be a bit of an understatement. Which makes me feel even more depressed as I am filled with guilt for not being the fiance my partner asked to marry, and not being the mum to my darling boy that I should be.

I had to admit defeat recently as the pain had pushed me to the point where I wanted to give up completely. I had to go to A&E again. This experience was more positive than my previous one.  This time I got a trolley AND saw a doctor!! Thankfully I also got some strong pain relief that brought me back from that knife edge. I also got a plan of what to try until my next hospital appointment.
I think we underestimate the affect pain has on someone psychologically. I know I was unprepared to have so much pain I actually wanted to die. That is not a comment I make lightly. The only reason I'm sharing that detail is so that you, the reader, will know that you are not alone. Or you may know someone with chronic pain, now I hope you can understand why they might be severely depressed. Pain is all consuming. It makes the world black and hopeless.

One of these days someone will find a treatment that will lessen the pain so I can gets hugs off my two men, big and small, without wanting to scream.

Thank you for reading. Sorry. I did go on a bit xxx

Please share folks. Let's raise awareness!

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

Gentle hugs to all 💜💜💜💜💜

Wednesday, 2 November 2016

Paying the price

I left the house yesterday. "So what" I hear you say.
Well I haven't left the house since my last doctors visit. In fact I have ONLY left the house for medical reasons in the last 5 months!! Bone deep pain and exhaustion that is impossible to comprehend (I'm literally wiped out after a few agonising steps).

I am 42!!! 40 frigging 2!!! Going on 92!!

This is Fibromyalgia. It has taken my life. It has stolen my very being.
Now I live either in bed or if I'm lucky down in my recliner.
Before anyone starts. I know I am lucky. I have an attentive partner and the most adorable little boy in the world.
If they were not here though........

So yesterday I dragged myself up and got dressed. Into the car with the boys and 5mins drive to a local beach. It was glorious. It was pigging FREEZING but it was wonderful to see the joy on my darling sons face at having me there. Granted I just sat and watched him play but it was fabulous.

But is the but... Today I am even worse than ever. My hips and back in spasm. Run over by the invisible steam roller in my "sleep" (I use the term loosely) whilst lifting huge weights with my arms. In bed. Crying in pain. Trying to hide it though.

Pain killers not working. Still no access to the medications I need as HSE won't pay and I can't afford. How I am not insane I've no idea!

Next time you hear someone has Fibromyalgia. Don't say "get well soon", please don't share your stories of aunt fanny who used to have it but it vanished. It doesn't go away. The lucky few may find treatment that works but a lot of us struggle to make it through a day without really dark thoughts.
So instead of " get well soon" maybe "keep fighting" would be better. Or a simple "I understand".

Just remember this. I am not in my bed because I choose to be. I would love to be playing with my son. I would love to be working at the career I've spent 20 years building. I would love to even pop to the shops.
But I can't and its not through choice. Until I can get the help I need I will have to keep fighting. I have no choice. I have a son. He is my reason 💓

Thank you for reading.

Please share folks. Let's raise awareness!

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

Gentle hugs to all 💜💜💜💜💜