Saturday 30 September 2023

Life with pain

September is nearly over so before it ends I’ll quickly write a post for Pain Awareness Month.

The hashtag #LifeWithPain that is being used for this year’s awareness month sums up my life really well. I’ve lived with pain to one degree or another my whole life. I can’t remember what’s it’s like to not be in pain; being in pain is my normal.

When I was a child I often complained of being in pain, especially in my back and joints. I was diagnosed with hyper lordosis, a high acute curvature of the lower spine but the vast majority of the time Drs put my complaints of pain down to just being growing pains. Looking back now I can see that these were early signs of my Ehers-Danlos Syndrome.

I find it hard to score my pain when asked because my normal daily pain would score high and I just try my best to get on with it alongside the pain. So when I’m say in the Emergency Department and I’m asked to score my pain it’s hard as I score my pain differently to someone who doesn’t experience chronic high pain levels. Another thing I do is I always save my high pain score, especially 10 in case I ever experience worse pain in the future even if I feel like 10 at that time, just in case. What I find really annoying is my local hospital now use a 1, 2, or 3 pain score - how the heck do I give a score on that?! 

When I talk to people about living with chronic pain and the pain that I live with people ask me things like ‘how do you still manage to get out of bed’ or ‘how do you still manage to function’? Often it is hard to do both of those things but I have to live and I have to have some sort of life, I’ve just learnt to live alongside my chronic pain and find ways to have a life but sometimes it does affect my quality of life as well as my mental health.

My pain varies and I do get my non-functioning days. Most days I just about manage to function due to a mixture of different medications, aids and the support and enablement from my PAs/carers. I’m also under pain specialists at UCLH which I’m really grateful about and they’ve helped me to learn to live with my pain and find ways to make it more manageable. It’s still incredibly tough and I always flop at the end of the day with growing levels of pain.

I experience a multitude of different types of pain. You name it; I feel it. From joint, nerve and musculoskeletal pain to chronic headaches and migraines I experience it. This is because all of my chronic illnesses come with chronic pain and with some illnesses the symptoms include different types of pain. The unpredictability is hard; not knowing how I will be one day to the next or how severe my pain will be as well as experiencing multiple types of pain at once.

Often medical professionals struggle to understand chronic pain especially as I have rare and/or misunderstood illnesses and this has led to many negative experiences in the past. There have been some good experiences but most medical professionals don’t experience chronic pain for themselves so how can they relate to patients who experience chronic pain and how can they empathise to give them the care they need in an understanding and compassionate way? I definitely think more training and education on chronic pain is needed for medical professionals. 

I believe that more professionals and decision makers who allocate care services need to better understand the needs of patients so we get the care we need both in hospital settings as well as at home in the community. I also think more research is needed into effective treatments and care guidelines needs to be improved.

Personally I don’t believe in medicine alone. I do a lot to supplement the medications I take for my pain. I find regular massages help, these are done by a lovely lady called Hollie who is trained in understanding chronic health conditions so the treatments so gives me are more targeted at my symptoms rather that my massages being a spa experience. I also find relaxation and mindfulness meditation helpful especially resting with soundscapes. Distraction is also a good tool as is getting enough sleep at night and staying hydrated. Also just listening to my body and what it’s telling me. Pacing and activity management is also key. I also enjoy a hot bath too. There are many things that I do daily to help me live with pain.