An up hill struggle

Blimey O'Reilly it's never ending!!
I've had enough of this ride, can I get off please!!???

I've been in a flare for a while now with the severity going up and down.
Well last night and this morning I'm in the worst flare to date!!

What's a flare you ask.

It's different things to different people. Not all flares are the same. If someone says to you they are flaring, please don't dismiss them. They are telling you that their pain etc has spiked and they are struggling to function.

For me the skin started last night. All over sun burn. Clothes or even BREATH touching skin causes pain. I've now got all my clothes, Inc socks, on inside out. Something I've had to do for a while but now my old faithful top is causing pain too. So that's inside out as well.
On top of that is bone, and muscle pain. My entire body hurts. I can barely move. My ribs hurt to breath. Every joint hurts. It's hell.

What did I do to set this off you may wonder?

I sorted out our kitchen drawers ahead of having to leave our house (another story).  That's all I did though. I even had a chair positioned to help.

Life with Fibromyalgia is life on a knife edge.

You never know what will set you off.
Granted with me my tolerance level is very low, I will invariably pay for any activity.... But cleaning the drawers!!!??? I mean come on!!!???
How the hell are we going to manage moving house with a burden like me and a 3yo!!???
My partner is amazing but he is shattered.

My point dear readers is to ask you to please take the time to listen to your loved ones. If you are the person suffering below you will find a link to an interview I did with the journal. Please feel free to share with your family members. Some of you have reached out to me and said how much it resonated with you so please do share the heck out of it.

We need to raise awareness!!

http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below. Being sick and being on disability with zero income is no fun. Especially with a young child. We put ourselves after him. Always. As all parents do. Anyway. Much love and thanks to all 💜💜💜💜

https://www.gofundme.com/invisibilityhurts

The toll it takes

Its kind of hard to keep track. Its only when you look back it hits you.
The hours lost to pain.
The words no longer able to find
The confidence vanished.
The tears shed.

I can't believe it's been so long since my last update. Oh I'd love to be able to tell you that things are on the up.
Errr NOPE, just when you think it can't get any worse.....oh yeah it can.

My health is much the same, on its way down again. My hips will need injecting soon, I don't seem to have a follow up appointment after all that hard work in Harolds Cross Hospice and no follow up...eh??

Just get on the phone you may say. I can't think how to explain how hard it is to talk on the phone. Writing is one thing. This piece was started a month ago. The phone though. There's no hiding the fact that you can't find a word. Have a total, and I mean total mental block, not one word. You can almost see the blank space. The more you realise what you're stumbling over then the anxiety kicks in and the stuttering starts.
This is me remember, the ICU nurse. Never had a problem talking, my friends and colleagues can attest to that! Lol
So, the phone call goes unmade.....

That seems so insignificant now though.
My darling partner is finally divorced from his ex.
I will soon (and my 3yr old son) will be made homeless.  Oh and having to rehome our fur babies that we've had 10 years!! That's heartbreaking enough as it is!!!
No income, no savings, living hand to mouth on disability allowance. Waiting on a carers allowance appeal. Yup, appeal. I'm not disabled enough. Ugh.
So here we are appealing for emergency housing. 

Sounds so dramatic but it's actually true.

When you are really ill, you rely so very much on others. The stress of all of will only serve to make me worse (dread to think how).

Again I stress, I'm not alone, these struggles are not isolated. Please if you know someone with a chronic illness, just see if there's anything you can do for them? Can you make that phone call?

Once again I've waffled on.
Thank you so much for reading this, please share my story if you can.

I recently did an interview for the journal.ie which I would love for you to read, watch and share.
I've not mentioned CBD here but you will see me talk about it in my interview.  I'll discuss it properly at another time.

http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.

https://www.gofundme.com/invisibilityhurts

Much love and gentle hugs to all 

A public letter to Simon Harris Minister for Health AND my local TD

Dear Simon,

I am pleased to say I was recently awarded Disability allowance. 

That's where the good news ends.

My partner was refused Carers allowance!!! 

We have appealed but is there any way you can help us on this? They stated I wasn't disabled enough. Its a sick joke. 

With this and the ongoing issue with medical cannabis. And the press glossing over the fact that 10's of thousands of pain sufferers are going to be left with no viable alternative to opiates. 

I can tell you this without a shadow of a doubt, as I have seen both sides of the coin now, "We" are simply desperate for an alternative. One that is less likely to KILL US. That statement is not an overly dramatic one. It is fact. Opiates kill. Cannabis doesn't. 

I haven't heard from you in a good while. 

I trust you will make time to reply to me this time. 

Regards, 

Jo Allen 

An update

Hi everyone, I wanted to check in with you all and let you know I'm not being rude, I have not received any of the money recently raised yet so I can't show you what you've got me.

I was just concerned that people might be thinking I was ungrateful. Most definitely not!!! I love that people would do these things for me. Honoured in fact.

I'm pottering around, trying not to spend too much time in bed (she says lying in bed shhh 🙈🙊).
I've been flaring now for 5 days, at least, and its exhausting.
My whole body is burnt and bruised with no outward evidence of injury. It makes it so difficult to wear any clothes (no I'm not in the buff), or lie on anything but my softest bedding in my softest PJs.

When I get some of the money its on my list!
Along with a lot of things lol

Anyway, thanks again and much love and gentle hugs to all.

💜💜Jo💜💜

Happy Mothers Day!

Happy Mother's Day to all you wonderful mothers out there!!

I am sure I am not alone and spending this lovely day in bed, in pain.

Not just "normal" pain though, but this incredibly awful Skin Flare. Its hard to describe, kind of feels like your skin is on inside out, all over body sunburn.  I can feel every stitch of clothing and bedding and it hurts. There's nothing I can do to help except take my heavy artillery meds and hope it passes.

What did I do to deserve this one you ask?

I went out for a drive with my boys yesterday. Yes, I sat in a car for an hour.  That is it!! Oh and I pushed my darling boy on the swing in our back garden. Let's not forget that one!! Ffs!!

As a result I didn't sleep well, tossing and turning (waiting to basically pass out) and when I did sleep, I woke up in agony.

My Darling boy climbing over me this morning was insanely painful. Sadly he is too good at saying Ouch because it leaves my mouth before I can stop it.

But I pasted on a smile and thanked him for the wonderful card he had made (thanks Daddy) and hid my agony to give him a cuddle.
His my relief when I knew they were going out so I could suffer in silence. Cue mummy guilt (my constant companion). She's a right b@tch that one. Follows me around constantly.

Anyway, I know I am not alone. It saddens me to see just how many people are living a similar hell to me.

To you, if you are reading this I want to say. Stop. Take a breath. Take a moment to think about what's good in your life. Embrace the love and GIVE YOURSELF A BREAK!!  Don't be too brave, take your meds, take it easy.  Shut mummy guilt in a freaking box and shut the lid! She has no place on your shoulder today.

To everyone else, do you love a chronic pain sufferer?
See if you can do one small thing for them to help them take care of themselves.
Do they need anything from the shop? A shoulder to cry on? A non judgmental ear? Someone to take the kids to the park??

Whatever it is don't let them put on their mask and say No "I'm fine"
Its not true!!
If they're having a good day please remind them not to over do it. There is always a price to pay sadly.

Anyway, that's me done waffling. I'm following my own advice. I'm chilling, relaxing in bed, waiting on meds to kick in.  Listening to an audiobook (can't hold books these days) and giving myself a break!
Its OK not to be OK!!

Much love and gentle hugs to all 💜💜💜💜

Heartfelt thanks 💜

I want to take this opportunity to thank everybody who was involved with The Great MoJo run (mojo was my nickname at primary school), I am truly thankful.  From the organisers to those who participated and /or donated. Thank you 💖

I have a massive wish list of things that will help me with my daily struggles. Trust me when I say I'm thinking very carefully about what to spend the money on.   I am very conscious of all the hard work and effort that went into this event and I want you to know just how much it means to me.

This is not just about money, this is about you all helping me with my pain and daily struggles.

I am truly blessed. Thank you!!

Humbled

Huge day tomorrow.

https://www.facebook.com/The-Great-Mojo-Run-1138175352947409/

The MoJo run is on tomorrow.
I still can't believe that my friends and neighbours are doing this for me. It is truly humbling.

Love and Gentle hugs to all 💜💜💜💜💜