Katie Cupcake Life With ME May12BlogBomb 2016 Chronic Illness ME Post

Knowing Your Limits Does Not Make You Negative! // May 12 Blog Bomb // Chronic Illness Post

Hi guys!

You may or may not know that it is *ME Awareness Week.  If you’re a regular reader, you will already know that I have M.E.  If you’re not, and want to know a bit more about the illness, I’ve written about that here.  The purpose of ME Awareness Week is literally that – to raise awareness of this often very misunderstood chronic illness.  As the charity Action for ME say, “While we work to increase understanding of M.E. throughout the year, M.E. Awareness Month offers an opportunity to really highlight the impact of the condition in the press and among professionals and the general public”.

May12BlogBomb 2016 CFS ME Awareness Post

The reason that awareness is so important is that it’s an invisible illness – it is misunderstood, hard to diagnose, and there is currently no cure (or even effective treatment).  As ME can make you so unwell, sufferers often stop being able to spend time with family and friends, and may have to stop working.  We can become isolated as we are stuck at home and don’t really get to be out in society.  This means that others often don’t see the true toll the illness takes on their loved one.  I went from working full time, exercising regularly, training with a roller derby team and spending lots of time socialising to being bedridden in a fairly short period of time.  If you want to read last year’s ME Awareness Week post, you can find it here.  I explain more of my story, from my symptoms, how my life was affected and how I imagine my future without chronic illness.

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Five Things I Tell Myself That Are Not True as a Spoonie

5 Things I Tell Myself as a Spoonie…That Aren’t True! // Chronic Illness

Hey guys

I think most people have thoughts that repeat themselves over and over in their brains, but they would never say out loud.  If they did, they would probably realise they’re not really true… but we are all so critical of ourselves.  We would never dream of pointing out a friend’s ‘imperfections’ or telling them they weren’t good enough, but for some reason we see no problem in doing it to ourselves!

Five Things I Tell Myself That Are Not True as a Spoonie

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Nimble - The one finger wonder tool review - disability chronic illness aids

Nimble – The One Finger Wonder Tool! [Sponsored]

Hi guys

I hope you’re all well today, and if not – sending spoons/love your way!  Today’s post is all about a handy new gizmo that is currently making my life much easier.  This gadget is tiny, but you’d be surprised how much it can do.  I’m already imagining all the different uses for it!

Nimble - The one finger wonder tool review - disability chronic illness aids

 

This is a sponsored post. I was provided the product in exchange for an honest review and have been compensated for my time through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by Version22 Designs or Chronic Illness Bloggers.  As always, I will only tell you I like something if I truly do.

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Hydrotherapy Treatment for ME Fibromyalgia Chronic Pain

MY HYDROTHERAPY TREATMENT // PART 4 // CHRONIC ILLNESS POST

Hey guys

I’m back with another installment in the tales of my hydrotherapy treatment!  If you haven’t read my previous posts, you can find them here: Part 1 / Part 2 / Part 3.

Hydrotherapy Treatment for ME Fibromyalgia

After my first session, I definitely experienced some side effects.  For the rest of the day of my first session, I actually felt pretty good.  I had a bit of energy and the pain wasn’t too bad – I feel like I was probably running on adrenaline.  I expected to wake up feeling awful the next day, but I didn’t.  Don’t get me wrong, I didn’t feel well, but I felt my usual level of unwell.  It was the day after that (so 2 days after the hydro) that the post-exertational malaise kicked in…

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Mother's Day - Why my mum is my inspiration

Why my Mum is my Inspiration // Mother’s Day!

Happy mother’s day everyone!

I’m not a mum, but I wanted to celebrate mother’s day with a post about the most important, inspirational person in my life – my mum.  I had a lovely childhood, and I have considered my mum a friend from my early teens (around the time I had the crazy realisation that… parents are people too!)  Our relationship has grown stronger and stronger as the years have passed.

Mother's Day - Why my mum is my inspiration

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The Spoon Theory graphic

M.E Clinic // My Experiences – Part 2 of 2 // Chronic Illness

Hi guys

Today’s post is part two of two – you can find the first post here.

Switching to ME Clinic Home Visits

At this point (towards the middle/end of 2015) they decided to switch me to home visits and somewhere down the line there was mixed communication.  I was given the impression that it would be more of a living assessment and they would give suggestions on what I could change around the house to make daily life easier, but that wasn’t the case at all!  I actually cancelled my home visit weeks before, as I was due to be moving house shortly and didn’t want to waste their time assessing somewhere I would no longer live.  Once they realised, they told me that wasn’t what the visits would entail and we arranged for my first home visit once I was settled into my new house.

Chronic Illness Spoonie

Home Visit 1

Two women come for the home visits – a Senior OT and a nurse.  They both have very specialised training in M.E.  I’d met them both before, as the clinic actually put on open days once or twice a year, aimed at helping family, friends and carers understand the condition and manage it better at home (really useful!)  The first session ran over to 1.5 hours and was exhausting, but so worth it as it was very enlightening.  They took me back to the very beginning of my ill-health (aged 15) and helped identify precipitating factors such as various illnesses, operations, traumas and stress.  One thing to note – they really don’t mind you being in your PJ’s with messy hair… they’ve seen it all before!

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The spoon theory graphic

M.E Clinic // My Experiences – Part 1 of 2 // Chronic Illness

Hi guys

Today’s post is about my experiences with the NHS ME Clinic over the past 24 months or so.  I have mentioned the odd bit here and there, but thought putting it all together in one post could be a useful resource for those who are being referred themselves and would like to know what to expect.  I have split this post into two parts as it’s quite long and I know that can be hard to deal with as someone with chronic illness and brain fog!  Part two can be found here.

Chronic Illness Spoonie

Initial Referral and Clinic Visits

I was referred to the ME Clinic relatively quickly after being diagnosed, as there is a limit to what GP’s can do to help chronic fatigue.  They are better (well, a little better…!) at dealing with the pain side of things, but tend to leave the fatigue side to the experts – at least in my area of the UK (Leeds).  Firstly, I was very lucky to live somewhere that has an ME Clinic, as there aren’t too many in the UK.  Some people aren’t referred at all; others have to travel quite far to attend (which is a joke in itself, as often these people aren’t actually well enough to travel).

My first appointment was with a Consultant and was very much a fact-finding meeting.  She took down a very detailed medical history, together with all of my symptoms at the time, what I had tried to help myself and what medications I was taking.  At this point in time, I was working full-time.  Not long after that, as I started to get more ill, I changed my hours to 4 days a week to try and manage my fatigue levels and attendance.

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