#3 Exploring physical health

Hello dear lovelies,

And I said to my body, softly, “I want to be your friend. It took a long breath and replied, “I’ve been waiting my whole life for this.” – Nayyirah Waheed

I am back. This week I thought I’d explain and reflect on my physical health. Lots of reflection is important to wellbeing.

Now, I can’t remember when I first started struggling with my chronic pain specifically, it’s been developing over many years. I remember fibromyalgia developing in August 2020. I remember my lack of speech in 2023, seizures in 2024. Due to it all going on over time, I’ve really had to try and adapt with the times. So today, I want to ponder how it affected me at the time, how I had to adapt, and like last week, what recovery has looked like, and you’ll find similarities and differences. As ever, these conditions will always be around for as long as I live, and I have accepted that (I will at some point explore acceptance with you!)

How it impacted me

With fibromyalgia, I experienced pain everywhere, my whole body. Aching, burning. I tried so many medications that did not relieve it in the slightest. I was chronically bed bound. I found my head would bring fog, so I couldn’t think clearly. I was so fatigued I could barely drink. After consistent contact with the GP, I was referred to a rheumatologist during all of this. After many tests, I got my diagnosis. It was a relief to know this wasn’t a deluded experience. I was referred to a Pain Management Programme, and it had so many resources. But it never solved my issues. That is just my experience, though.

In 2018, I developed arthritis in my spine, which, as a 22 year old, was quite a shock. I ended up having disc herniation, which led to an operation last year. The vertebrae is too damaged for anything to be done, according to the neurosurgeon. So I will forever have back pain. I was so terrified hearing nothing could be done it filled me with dread, I will not lie. I despised how weak I felt and that I would forever be stuck

In October/November 2023, I ended up on a stroke unit. You can imagine my fear. I was diagnosed with Functional Neurological Disorder and referred to a specialist team. Seizures developed from stress last summer. They became like my childhood panic attacks. They drained me, but I felt hopeful when accepted into the specialist team and that they could help. Seeing my diagnoses of dissociative amnesia disorder and Non Epileptic Attack Disorder on my birthday brought a sense of calm.

How I adapted

Fibro has been the biggest one to tackle. I have been in and out of flares and left work last year due to all of this and mental health. The realisation set in about how my body and mind linked and how what was happening was untenable and unstable, I knew I had to get back on track. Initially, with fibro, I tried to focus when I could on university work at the start of it all. I’d speak instead of typing when I could, I bought different equipment to help me whilst I was stuck in bed. I don’t fully remember because shortly after that, my dissociation became far more prominent, and now there are just pure blanks in memory when I know memories were made.

It has been a process, but I think it’s only really, recently, when I have been enacting changes with a focus on resting, sleep and energy levels for the day that I’m feeling better. I take a moderate dose of an SNRI for my fibro pain, and it works well for me personally and has only had to have one increase. It eases a lot, but the changes I’ve made are making it easier to handle.

When it came to sleep, I’ve had to consistently experiment with my night time routine and stick to it, I have done so for a while. My pain, seizures, and emotional instability all come from poor sleep. So now, I tidy, prep for the next day, complete hygiene and do some spirituality journalling before using a pillow spray, roll on essential oils and hand cream to send me to an easing of settlement. I play music from Headspace to help. It’s not a cure, but I’ve seen my results. It is giving me more energy.

The seizures come from stress, which, given my mental illnesses, is easily found in abundance. I am still learning to adapt because when they’re severe, I become so exhausted. It’s about learning my energy levels, pacing, and behavioural activation (balancing of activities, not too much, not too little!)

Overall, it’s about making compromises with myself on any given day. If I can’t do something, what can I do? So if I can’t walk, I’ll do tai chi and qiyoga. If I can’t think straight, I’ll meditate to bring a refresh. But it really is trying to tune into my body and learn what it needs.

What recovery for me looks like

Recovery at the start seemed possible. However, as things developed, I was facing immense uncertainty at it being lifelong, I felt despair. Wasn’t mental illness enough? But with time, experimenting, and adapting as a river, I was not going to be beaten. Another strong word, why do I feel I have to battle, why is it always a war, why is it always suffering and defined by its symptoms?

This is where acceptance came in. It doesn’t have to be a battle. It’s not a war. It just is. I have the power to decide what I want my life to look like, with the right resources it can be done. So, I have undertook many journeys since my breakdown, I have changed my routines, connected with myself, learned so much, and put so much into practice. Recovery for me is how I am now, where I accept the fatigue, I accept the pain and work around it by changing my days. If I seize, I have a slower morning or evening, etc. I walk as I can, I do different exercises. Recovery for me is managing it as best I can. It’s tiring work, and it always will be. But it doesn’t limit my life. It allows me to become more determined and powerful.

Important note: I chose the image and quote because, for so long, I didn’t respect my body, I didn’t listen to it. I hated seeing myself as limited and defunct. Now I appreciate my body, I love my body for its own strength and determination to help me move and live my life. Instead of battling, I give myself grace, I show my body that I’m it’s friend and nothing will change that. It feels relieving in a way I can’t describe when I stopped fighting and just breathed.