grief – Dystonia and Me

Archive, March 2023

Check Engine Light

Posted on March 18, 2023 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.

Archive, March 2013

Life Challenges: Would you fight or would you run?

Posted on March 2, 2013February 24, 2022 by dystoniaandme

At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.

Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.

I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.

Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.

I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.

Archive, February

It is just the beginning…

Posted on February 5, 2013February 24, 2022 by dystoniaandme

I found this picture earlier on today, and felt that it would be appropriate to share it with you all. Yesterday I was rather down in the dumps due to having a bug for a few days and my Dystonia was playing up big time, then I got emotional about all the changes it had made to my life. This picture really got me thinking about the situation I have found myself in.

Dystonia is life changing! I am just at the beginning of a life long road and it is going to take time to adjust to everything. However just because parts of my life are no longer the same does not mean that it is all over and that it is time to give up. I need to recognise and accept that I am going to have down days now and then, where I grieve for the parts of my life I have no longer have. Yet at the same time I need to recognise the amazing things that have happened to me since the Dystonia hit me, such as the people I am in touch with, going back to riding, etc. If I did not have Dystonia then I would not have set myself a new life goal, I would never have even thought about aiming to compete at the Paralympics, but now that is something I strive to do.

It is going to be a long journey, and the beginning is always the hardest part, but you never know what is waiting for you round the corner. You only live once, you need to make the most of what you have!