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💜💜