Tag: spoonie blog

Posted in Archive, March 2023

Check Engine Light

Posted on by dystoniaandme

It’s been a bit of a rollercoaster of emotions these last few weeks. That’s to be expected I suppose. Gastroparesis and its impact on my Dystonia and other conditions has been yet another life pausing event. Another painful event. Another force outside my control. There’s been a lot of tears in frustration, upset, anger and confusion at just how to manage this new hurdle. I don’t doubt that I can and will adapt. It’s the grief cycle again.

It’s got to the point where the doctors have finally agreed to have the district nurses come to my home three times a day to administer antisickness injections. These are the only antiemetics that I have found of any help. But in typical misbehaving form that my body truly excels in, this has not gone smoothly. I expected some bruising, but I’m now looking a tad black and blue, and bleeding a silly amount each time. It’s worth it to be able to keep my Dystonia and heart medication down though.

I’ve found the pain from the Gastroparesis, on top of my Dystonia has left me exhausted physically and emotionally.I do my best every day. Some days my best may look like nothing. I like to call that energy saving mode. I’m in that mode a lot lately as I’m acknowledging what my body needs. This is hard. Sounds silly I know. But life doesn’t exist for us to function this way. It’s geared up so that the expectation is you fall down, you brush yourself off and carry on. I need to stay down a bit longer.

The best way to describe what I’m trying to say is this. You wouldn’t set out on a long trip with a car that had a check engine light flashing, four flats, a drop of petrol and no oil. You wouldn’t get anywhere, you’d destroy your car. My body is the same thing, it’s out of fuel, every light is flashing and tires are shredded. I need to spend some time working out how to patch me up and that’s ok. It’s allowed. It’s important to remind ourselves of that in a world that is fast paced.

Posted in Archive, October 2020

The Grief – Acceptance Cycle

Posted on by dystoniaandme

Being diagnosed with a chronic illness, for the majority of people, stirs up a lot of emotions. Its a process we all go through at different rates, and there is no wrong or right way about it. With illness there is often a sense of loss of normality, for every individual that’s different depending on your condition and what symptoms your experiencing. I really wished I had been given a heads up back when I first got ill about the grief I would feel, for the profound sense of loss I would experience. I fell into a really deep depression and for a long time was in denial thinking that somehow I was just going to wake up one day and be able to return to my Midwifery degree. If you go back to some of the first blog posts I ever wrote on this site it’s really quite easy to pinpoint which part of the Grief cycle I was in.

I turned to a combination of Cognitive Behavioural Therapy and Mindful Meditation to help me come to terms with my health and my new reality. This was a good mix and after a fair amount of time had passed I reached acceptance. Now don’t get me wrong I still had blips, a friend would announce they had decided to train as a midwife, or I’d find my old coursework in a clear-out and I’d slip mentally for a few days, but I would always be able to pick myself back up again. However what I didn’t expect, and again I wish I had been warned that this was a possibility, was that with each new diagnosis that got slapped on to me, and with every new symptom that became clear was on a downward path and here to stay; that I would find myself having to repeat the Grief cycle again.

It of course make sense that you would have to. You are after all experiencing a loss of sorts again. Mentally and physically its challenging and draining. It is natural for you to grieve, to be angry, to want to challenge what your going through until you reach some sort of acceptance. I’ve found myself going through this again recently. I’m on my 7th bout of Optic Neuritis, along with loss of all sensation in my right leg; I have next to no use of it currently. My local neuro team suspect MS but are investigating fully for all demylation diseases to ensure nothing is missed. Finding myself once again with more limitations, really sent me spinning. I found myself asking why over and over again. I felt like I needed an explanation because it seemed insane to have yet another condition added to my already extensive list. I’ve not reached acceptance yet, but I’m remembering my mindfulness and I’m defiantly moving through the stages quicker this time.

If I had to give one tip to someone newly diagnosed with a chronic illness it would simply be to kind to yourself and to remember to practice self care. Your allowed to grieve, its natural, don’t beat yourself up. Make sure you don’t bottle your emotions up, confide in someone you trust. you will feel better for it.