Posted in Archive, January 2022, September

Day to Day Management

No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday

A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.

Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck

I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.

Off to church. Scarf ‘hiding’ my neck support

My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections

Posted in Archive, January 2021

The Test Results Are In

After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.

If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.

Today I finally had my Emergency Video Consultation  with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.

He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.

So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.

Posted in Archive, February 2020

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.
Posted in Archive, October 2016

Duvet Days

Today is the last day of Invisible illness week 2016. I had had good intentions all week to blog daily, however readjusting to uni life meant that I was coming home from lectures and going straight to sleep. For this week I had planned to blog about achieving despite illness, and general spoonie hacks for coping with day to day life. Instead I’ve decided to leave these topics for another day and address the reality of what happens to someone with chronic illness when they catch an ‘ordinary’ bug.

I have spent the majority of today curled up under my duvet feeling frankly rather pathetic. Having caught a sicky bug and then developing a kidney infection I’m not feeling overly fantastic. Instead all my joints have been in a constant state of flare up pain, I have struggled to remain sitting upright for any length of time because my back feels like I have Snow White’s 7 dwarfs performing an irish jig on it; to walk the measly few steps from my bed to the bathroom has involved me gripping on to my walking sticks as I don’t trust my dodgy joints not to slip out of place and add to my already elevated pain levels. This is my reality every single time I catch some sort of acute bug. It sucks. Whenever my partner or my housemate has asked me what they can do to help, I’ve asked for a new body. It’s a silly retort and a bittersweet one at that. For a brief moment I’ll smile, as I know how unattainable that is, and then comes the downwards spiral because there are nowhere near enough words in existence for me to express how much I wish I could just have a new glitch free body.

Image result for spoonie life
credit: Pinterest  – Spoonie Awareness

My mental well-being always takes a blow when I feel ‘iller’ than normal. So finding positives in each moment helps. Today I’m celebrating the fact that I recognized I needed a time out from life, I’m thrilled that I actually managed to change into a fresh set of pyjamas, that hell yeah I managed to walk through the pain with my stick, and sure I only managed a wee while but I still managed to accomplish some revision.

Sure I may be moaning and feeling rather sorry for myself, but I’m over the moon that I still managed all these positive moments. Tomorrow I’ll wake up to a new sunrise, and hopefully experience far less pain.