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

http://www.gofundme.com/invisibilityhurts

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 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts

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 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

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 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts

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 ..here 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 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts

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 ❤️

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!!)....to, 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.

http://www.gofundme.com/invisibilityhurts

Thanks for reading. Gentle hugs to all 💜💜💜