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

Hormones and Chronic illness

Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.

During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.

Quote from Camran Nrzhat, ND.

Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.

*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.

Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!

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, December

Musings on my Dystonia and the NHS

Today is one of those days where I find myself  thinking about everything. The other day I had to inform my university that I would not be able to return to my midwifery training because of my Dystonia. I still have to speak to them a bit more about it in the next few days. Yet sitting here right now, my body is completely behaving, I feel normal. I feel like I am able to just get up and walk about and do what ever I want. Part of me even dares to say you’re fine. However I know I am not fine, yesterday evening I went blind three times, my jaw was in spasm and my body was very jerky. I know that the reality is that I am not fine or ‘normal’, but my body at this very moment in time feels like I am.

A large part of me wants to just get up and walk about and see what happens, I know that there is a huge chance that my right leg shall immediately play up and I will end up on the floor, but then again if I don’t try these sort of things out, how will I ever know what I can and cannot do, or what progress I may have made.

My consultant, when I first met him, gave me the impression he was wonderful and would fix me. The reality of it has finally sunk in, unless you’re sitting in front of a consultant or doctor the chances are that unless you fight them they will do bugger all for you. The way I see it right now is that I have two choices, I could spend my days feeling sorry for myself and waiting until October/ November next year to get treatment or I could start pushing my body a little bit further everyday and start trying to retrain my brain myself.

Over the last few weeks I have tried to push myself, so far it has been successful 98% of the time. I can now use my right hand to hold a spoon, I can stand with my right foot flat for about a minute or two which is a huge step. I am making what I think are huge positive step forwards and that is without the help of doctors or consultants, the people who should be helping me! I have also noticed that I tend to go blind when I feel like my eyes are straining, the obvious solution to this in my mind, is to go to the options and get some new glasses, so my eyes don’t have to strain so much, after all there is no harm in trying and it may stop the blindness.

What irritates me the most is that I am having to struggle through this and try to figure out how to beat Dystonia with very little help from the medical profession. They are the people who should be giving me ideas of how to help myself, or new things to try etc, yet their not doing any of this, I am lucky if they even return my calls or emails. The care the NHS provides shocks me constantly, I feel completely abandoned by them. However I will  not settle for this level of care. I plan on doing my best to bringing attention to the failings of the NHS system.