Ironically, I wrote about setbacks last week and then had one on Tuesday morning out of the blue. The good thing was that I didn’t have an epileptic attack but instead had a severe wave of pain that attacked my joints. It left me unable to walk or find any comfortable position.
Normally I am able to control the pain and manage it on a daily basis by taking pain relief medication or by resting. But none of the above were working on this day, I had to call an ambulance and was blue lighted to A&E. Pain is a trigger for my seizures and I really did not want to have a seizure. The only way they can try to reduce the pain is by giving me the higher doses of sub-cut or IV morphine that they can’t prescribe for me at home. It’s crazy how long I have to take to explain my history, my symptoms, and that no I don’t have a sports injury to at least two people before they finally agree to prescribe me something. Those moments I hate.
I know last week I talked about resilience and everything I said I wholeheartedly believe in but maybe one of the things I forgot to mention was how hard it is to develop it. Last Tuesday was a setback and even now I as I write this I am feeling the effects of it as I recover. I’ve generally felt extremely tired and the pain is simmering above it’s ‘normal’ level.
I thought I would walk you through a typical morning for me. My eyes tend to open around 3:30-4:00 am not because I want them to but 1) I have issues sleeping and 2) The pain tends to wake me up. I lie in bed for about an hour trying to muster up the energy and strength to move. My limbs feel so heavy some mornings and are unresponsive to what I would like them to do. Once I am finally out of bed I then pace around a bit trying to wake my legs up. It feels like I am a 96 Ford Fiesta that has run it’s course and needs to be scrapped.
I then go into the office and layout out my medication for the day. At a first glance you might mistake them for a bag of pick’n’mix due to the number and combination of pills I need to take. I don’t enjoy this part of the day at all, but I’m always hopeful that starting the day by looking after myself will more likely result in a good day.
I crave my cup of coffee, three spoonfuls in my black cup, two sugars and a dash of coconut milk. As I sip away, slowly waking up and feeling more like myself I then start to attack to my to do list. I turn on my laptop and start my day.
Some mornings are harder than others. The pain is always there, every day but the level at which it spikes is unpredictable at times. After a successful run over the last few months where I had been able to manage the pain and get back into a decent gym routine, I felt the wind had been completely knocked out of my sails. Frustrated, angry, sad, tired and then angry again is typically how I feel after an episode. I find it hard to speak to people and prefer to sit with my own thoughts. But I work hard at being positive, snapping myself out of it and work towards getting back up.
We all struggle with something and people often hide theirs. I hope as you read this you find some comfort in that and understanding that strength is born from struggle.
My top tips for getting over a setback:
- Accept that you can’t control every situation fully, but plan for the events that you can control and break them down into manageable chunks.
- Be good to yourself, remember that the setback is temporary and does not reflect who you are but simply where you are right now.
- Communicate how you are feeling to your support network. Tell them how they can support you when they ask.
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