Friday, 28 October 2016

Did I tell you....? Errm i forget

One of fibromyalgias many symptoms is well recorded and much joked about.
"Fibro Fog"

We hear :

"we all forget things"
"you're just getting older"

Blah blah blah yeah I've heard them all and much more (which ironically enough I can't remember right now).

But what about when it really starts to impact your life?

It was only yesterday when I repeatedly forgot about my heat pad in the microwave.
Yup. 2 mins and I forgot it was there.
I joke about being like a goldfish but it's really not funny.
Out of sight out of mind is my tag line.

Here's a description of Fibro fog I found on medicinenet.

Fibro fog: A type of cognitive dysfunction reported by many people with fibromyalgia. Also sometimes referred to as brain fog, its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood. People with fibromyalgia experience fatigue and are at risk for sleep deprivation and depression, but research has not supported the idea that these factors are the cause of the so-called fibro fog. Another possible theory is that the nervous system disturbances in fibromyalgia affect the blood vessels of the brain, causing certain areas of the brain to receive less oxygen at times. Also known as fibromyalgia fog.

In addition to the above I would add that pain definitely fogs your mind. Its like a constant cloud making it hard to think straight.
Whatever the cause the reality is beyond frustrating, it can be really upsetting.

My own fog started gradually. It slowed me down but I was still functioning.
I'm not sure when it all went wrong but there was a point where it felt like I lost my faculties.
Some days are worse than others.
When I can't name common place items.
Can't remember how to work something I use all the time.
Can't remember what I did 2 minutes ago.
Get lost in a conversation because I've no idea what I've just said 2 seconds ago.

I'm not sure if it was medication related when I took a big dive but I remember chatting online to a friend and I could barely string a sentence together.

I was taking Lyrica (Pregablin), I'd only been on it a month when I was struggling to put my medication organiser back together. I didn't know what order to put the days in at the top so they'd come out right at the bottom.
This was my wake up call to stop taking that medication but also to acknowledge I had a big problem.

My cognition still has not improved to this day. Is it Fibro related cognitive dysfunction or is it a long lasting result of medication, or indeed a bit of both?

I'm not even 44 (yet) and I'm having to use reminders for reminders.
I need everything written down.
Files and links and bookmarks.
All tools to try and cope.

I rely heavily on others, I still find this hard. I was so independent and now I get talked about in front of me as if I'm a job that needs doing.
Family and friends luckily know now and do try to make allowances for me but its still embarrassing.
They don't understand how I can forget something they've told me more than once, sometimes I can see this frustration in them but what can I do? I simply cannot remember what I can't remember.
I have to write everything down but even at that I still forget to look at the note, the calendar etc.
Reminders go off but if I don't do the thing straight away I will forget again.
It is mainly my short term memory. Luckily I can still remember a lot of my medical knowledge, a lot of times I'll have to read something to trigger that knowledge though.

There are a few things that I do find help.

Medisafe - medication reminders app
ColorNote - notes app but you can save to your task bar on your phone so it's always on top. I put my To Do list up there.
Notebook app- I like ones that sync across devices.
Small note pad and fat pen, sometimes old school is needed. I leave that next to my bed.

Most of all though GIVE YOURSELF A BREAK!
Please please try not to feel bad. You're not alone.
Feel Free to show this to your family.
Help them see Fibro Fog is a real thing.
It's part of a very complicating and debilitating illness.

If you're that family member, first of all thank you so much for caring enough to read this, you've no idea how much that will mean to your loved one.

Here are a few tips /requests ❤️

Instead of getting frustrated with repeating yourself for the 100th time. Write whatever it is down for your loved one and put in a prominent place.

Perhaps save a reminder in their phone for them.

If you create an event on your own calender, add them to the event so they get notified. This way they'll know when you've got something planned.

Try not to make a big deal about forgotten words, or pauses in conversation.

Laugh if you can, I know we try. I do come out with some corkers. Sadly can't remember any but I do remember laughing so that's the main thing.

Anyway I've babbled enough, as always, thank you for reading.
Gentle hugs to all ❤️❤️❤️

Remember #invisibilityhurts let's stand strong together ❤️

Thursday, 27 October 2016

Story time...are you sitting comfortably?

So. Another day in bed it would seem. Perfect time to write a wee story.

I figured before I go on, I must go back........

Not all of you know me, even those that do may not know the story of how I went from being a highly regarded ICU nurse (yeah, I'll toot my own horn!! I was dam good!!), well, this.

Where are we now? End of October?  I think it was  last September (2015) I got diagnosed (I forget, my memory is awful, but that's a tale for another day), something I pushed for myself.
My GP didn't think of Fibro. I knew that 18 months after my son was born was too long to still be in pain following my pregnancy from hell ***

*** I had SPD (Symphysis pubis dysfunction). My pelvis felt like it was going to separate and baby literally fall out! My hip joints my back and "down there" was pure agony.
My pain was so bad I ended up in a wheelchair, repeatedly admitted for prem labour thanks to the pain, on a fentanyl patch AND oxynorm tablets. My consultant was fantastic (I had to switch to the consultant clinic at my local hospital as I could not sit in the car for the 40min journey to my maternity hospital), he agreed that a cesarean section was my only option, at 36 weeks I was begging. He said he would deliver me at 37 weeks but for baby's sake to aim for 38. I did it!!!
my darling boy was delivered by c-section at 38 weeks. He needed to go to NICU as he punctured his own lung with his powerful first breath. He also needed monitoring for opioid dependency (the guilt over that still cripples me to this day if I'm honest). My baby was a fighter from day one. He was out of NICU within a few days and back to me on the ward. Why was I still there you may ask? I went spiralling into post partum depression.
As you can tell I could go on and on about this but I'll leave it there for now.

***right, where was I? Oh yeah, pain. So, on codeine 4 times a day and still suffering with back pain. Plus still needing my anti depressants all this time after my PND had crawled back in its hole.
A friend of mine, Dawn, who struggles with Fibromyalgia (FM) and said I should look into it. I did and quite literally it all became clear! There was no doubt in my mind. I took this info to my GP and she checked my pressure points and thought yeah it could be. not happy to make the diagnosis herself, I was referred to rheumatology.

Bear in mind I was still working 3 x 12 hour shifts a week. I had been doing this since DS (darling son) was 3 months old (my state maternity pay had run out as i had to start it early, and I was only an agency nurse, no work = no money).

I had started a new job (which I LOVED) in July, a permanent one!! Well permanent once probation was cleared......

I was finding that my pain was getting worse rather than better, my sick days increased and fairly quickly discovered that I could only manage 2 x 12 hour shifts a week.....

As you can imagine I became well acquainted with Occupational Health. I was loving my new job. I'd settled in so well and I just could not believe that it was all falling apart.
My rheumatology apt still hadn't come through, here I was with increasing sick time and no actual diagnosis.
I paid to see a consultant privately. He was quick to diagnose officially (I had gone armed with all my blood results) that yup! I had Fibromyalgia.

I was finally justified for feeling so crap!!! Oh my god the relief was AMAZING!!

Unfortunately my FM did not take this news quite so well and proceeded to get worse, and worse, and WORSE.

In the new year I was down to one day a week. Then one day a fortnight, finally working my last shift on Easter Monday.
By this time my wrists, hips, back to name just a few body parts had got in on the act.
My wrists were what stopped me working though. An ICU nurse unable to do CPR is as useful as a chocolate fireguard.

Work were amazing, so understanding. The limit was reached though. Their hands were tied. There was no way I could make it out of probation with my absence record.  I was still temporary. In June (I think it was) I lost my job on health grounds. The effect of that is really another blog. This one is long enough already lol

Since March my FM has deteriorated to the point I am pretty much bed bound. In constant pain / agony at times accompanied by fatigue that would challenge a bloody zombie!!!

This brings us back to today. In bed. In pain. In my personal hell.

I've kind of glossed over how I feel these days as I've rambled enough, plenty of more blog pieces to come.

Please share my story. Too few people know about Fibromyalgia.
I am a nurse with 20yrs experience and I knew nothing of it and how far reaching its effects are. It is a truly debilitating illness with no cure and very few effective treatments.

This is my go fund me page. Being sick is expensive!! I'm too young to need what I need and i fall in the health service gap. Any donation very gratefully received.

Thanks for reading. Gentle hugs to all 💜💜💜

Wednesday, 26 October 2016

Invisibility hurts

I was inspired to start writing this blog because of the utterly overwhelming response I received to a recent facebook post (see below).  

In all honesty I wrote that because I was fuming and upset.  I just had to vent. I truly had no idea the emotional impact it would have.  I cried when I read your replies.  I think I had allowed myself to believe that I had become invisible and no longer mattered.
So here is the post that started it all......

After a weekend of being unable to walk.....
I wish I could say I made the right decision going to A&E. Not so.

**It's a long post. Fair warning. **

As some of you may know my quality of life has taken a nose dive over the last few months. For the past 4 months now I tend to only leave the house for hospital or doctors visits.
I put up with A LOT of pain. Trying this combination of pills, then the next.
The ones recommended by my pain consultant are not covered by the medical card and cost hundreds a month. In fact I think the chemist was quoted €1000 for one of them.
I've been turned down for hardship funding twice now.
So I go without. Relying on pain killers. Trying with all my might to avoid opiates (morphine).

I struggle on. Staying in bed most days. It takes an awful lot for me to admit I can't take it any more. I avoided going to A&E all weekend as I knew in my heart how those with chronic pain get treated. I was in bed. Crawling to bathroom. Unable to walk.

I held out hope though. When I hobbled into my GP yesterday. Barely able to put weight on my left leg. Unable to use crutches due to wrist pain. No wheelchair, sure how can Brian push 2 of us? I couldn't push myself anyway.

She took one look at me and said I needed a few days in hospital for pain control and a regime put in place that might actually for me.

So I went. Letter in hand.

I sent the boys home. I knew I would wait. But not prepared for the reality of what it would do to my poor body.
It was freezing and drafty. The chairs hard wood.

I ended up spending 5 hours sitting in A&E waiting room. I was stoic for a couple of them. Keeping my mask in place. I don't usually let people see the real suffering. By the 3rd hour I was crying in agony. I could not walk to get attention.

When staff did come out they looked at me crying and said nothing. I'm so ashamed of my former colleagues. I would NEVER have ignored someone in agony. I fully understand the pressures of the ED. I have worked there. However, I am proud to say I never ignored someone who was suffering. If I was too busy I went back or asked a colleague to.
I can't imagine this would have happened if I'd gone to my local hospital.
The reason I didn't was to access rheumatology and pain services. Pah!

The honest truth is I ended up calling Brian to get me as the pain after the 5hours and the sitting and cold had caused my muscles to spasm. Not forgetting my original pain of course. Inhumane is a word that springs to mind.

I got home to my own bed. Made my own decisions on my medication (not something I advocate but I do have a lot of experience and knowledge to draw on) I actually slept.
I am now covered with heat pads. Waiting on Brian to tip me into a bath.
My order of CBD (cannabinoid), that I saved for, arrived just now.
Omg such joy!! It might bring me out of spasm.

The pain is still there. Friends are telling me to go back.
I'm scared. That's the honest truth. I'm still debating.......

I truly feel for all my fellow chronic pain sufferers who fall between "majors" and minors"

Love and gentle hugs to all

If you got this far. Thank you.
If you want to share my story please feel free.
Let's hope something changes so that those in such pain are not invisible any more.


Please see my GoFundMe link below, give if you can, any little helps xxx