Category Archives: Fibromyalgia Updates

Not Disabled Enough…?

I haven’t actually written about my disabilities and how they impact my day to day life for a while.  This isn’t because they haven’t been affecting me, but simply because when I’ve passed comments I’ve found that certain areas of the disabled community (and society…. I’ll get there) seem to think it’s a competition of some sort and that some people just aren’t “disabled enough”;  for what exactly I’m not 100% sure.

What I am sure about is that just because I don’t “look disabled” doesn’t mean my disability can be written off or ignored & invalidated and when I say the words “I am disabled”, I shouldn’t have to prove it to anyone.

Continue reading Not Disabled Enough…?

Don’t Say These Things

Ah… it’s a chronic illness blog – I’m gonna class this in my Fibro Updates tag, however this whole blog applies to every single chronic illness out there (I see you spoonies. I see you.)

Read on…. it may be a long one… I like to be thorough.

Continue reading Don’t Say These Things

TMI – FMS things no-one talks about

I’ve actually been wanting to do this blog for a while and I’ve never really been able to put into words what it’s like.

After today I think I have the descriptions down. And yes….. this will get VERY VERY TMI.

Continue reading TMI – FMS things no-one talks about

Fibro and food intolerance

One of the things few people openly talk about in regards to fibromyalgia, is food intolerance and what it does to our systems.

Well i am gonna break that silence. Take it from here on out that it may get TMI – sorry, but this happens.

Continue reading Fibro and food intolerance

Fibromyalgia Crisis

Euch…. I’ve had to mentally psych myself up for this blog because I have no clue where to even start.

Since being diagnosed in 2010 and learning I’d probably had my fibro since I was a child, I have only ever had two fibromyalgia crises. The first was in 2013 and I was at a gig (30 Seconds to Mars) with my ex. We had to leave early and I was wheeled to the tube after I refused to go to the hospital.

Continue reading Fibromyalgia Crisis

Holiday + Update

I’ll start with my amazing holiday in Norway from 21st to 28th of July. I had some an awesome time, I don’t think I can accurately put it all into words.

Arrived 10.30pm (Norway time) on 21st so I pretty much went back to my BFF’s house and crashed. Had an early morning wake up call on 22nd at 4.30am (after being in bed about three hours) by my BFF’s daughter (who I shall refer to as munchkin for reasons you don’t need to know about) who wanted to play and talk and watch tv.

Read on for more….

Continue reading Holiday + Update

Go Fund Me

Hey everyone. 

I’ve been doing some research and sadly the NHS will not supply me with a walking frame that’s fit for purpose.  They’ll only help me with one that is for indoor use only which is no freaking help for me.

They also want their crutches back,  which is sort of fine because they’re two or so inches too short and im usually twisted off to one side using them.

So…. I made a GoFundMe page so I can raise some cash to get myself a decent walking frame that’s gonna last and a set of custom crutches that are long enough for my height.

It’s amazing how the NHS are all about helping until you desperately need that help,  then suddenly you’re too you and they have no money.  Though they were happy to supply me with a fucking wheelchair.  No.  I want to keep my independence as long as I can.

So here’s the important bit.  I’m aiming to raise £200, it’s enough for me to get what I need.  I don’t want to be greedy.

The link is http://www.gofundme.com/kazmobilitymission if you cant give that’s fine,  all I ask is for you to share my story by sharing the link.

For the newcomers to my blog; I am 29 in March and have a chronic pain condition called fibromyalgia.  I also have arthritis.   Due to both these illnesses I’m stuck in the house without walking aids and I want to be able to get out and about.  I like my independence very much.  

The NHS claim I am too young to get the mobility help I need so I have to buy it all myself.  My parents are doing the best they can but we just can’t afford to get what I need.  

I really hate having to ask for help from people I don’t even know irl but right now,  I have no choice.   Without my crutches I’m stuck and they aren’t very stable if my head spins and I feel faint so for long haul I need my frame.    The one I’m looking at folds up,  has four wheels,  a seat that lifts to reveal a storage compartment and has brakes too.  I’ll try and insert a pic but I’m doing this from my phone so it may not work haha.

I really appreciate whatever help you guys can give me.  I’m gonna do a vlog later today to hit my YouTube followers.

Again the link is http://www.gofundme.com/kazmobilitymission

Thank you.

image