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. 

Sunday 10 September 2023

Mobility aids can be pretty too

I think for a lot of younger people (and maybe some older people too) the standard NHS ‘greyeige’ for most things isn’t that attractive. However we still need mobility aids from crutches to walkers and wheelchairs to assist us with our mobility to help us get around and be mobile and have a sense of independence and freedom. This is really important especially when your mobility is restricted because of your chronic illness or disability. For some people having a nice looking mobility aid can help them to accept the use of a mobility aid therefore use it. I’ve seen it before on social media where people have accepted the use of mobility aids better when they are more ‘fashionable’ or accessorised or less clinical looking like NHS issued equipment. From choosing a coloured frames for wheelchairs, having a coloured or decorative walking stick or pair of crutches or accessorising mobility aids. You can even buy accessories for mobility aids or find ideas online to jazz up mobility aids. But as pretty as your mobility aid is it’s still serving a purpose, it’s assisting the person’s mobility.

Ever since I’ve used mobility aids I’ve had pretty looking ones. I’d love a wheelchair that would better meet my needs but also the perks of not having an NHS issued wheelchair is the customisation options. However I have accessorised my NHS wheelchair to represent ‘me’.

I think when I first started to use a walking stick having something that was pretty helped me come to terms with the fact that I was starting to struggle with my mobility and I needed something to assist me with my mobility. Now if I could afford it I’d have multiple pairs of crutches to go with my outfit of the day but sadly they’re too expensive for that as is a lot of disability related things (being disabled really is so expensive, but that’s a blog post for another day). 

However not only are my crutches fashionable in terms of having a pretty design on them (designed by by me so they are utterly unique) they assist me with my mobility. Having pretty crutches just helps me express myself whilst at the same time having them to assist me with my mobility. I think I feel more comfortable and happier using them than I would a pair of standard issue NHS crutches. Though not fashionable (I’d love to see them in more colours) are my flexyfoot ferrules. Since getting them they’ve really helped give me more stability and grounding when walking.

Some of my wheelchair accessories are purely cosmetic like my Izzy wheel covers. Most recently I bought some RehaDesign push rim covers. Usually I’m reliant upon someone else pushing my chair for me because I don’t have the strength but these push rim covers are amazing! They give me the extra grip to be able to push myself a bit more myself independently from someone pushing me. They even work okay to a standard in wet and colder weather too. The push rim covers also help me navigate slopes and ramps too. They’ve really transformed my experience of being a wheelchair user. So not only do they add a pop of colour to my chair they’re giving me more independence and freedom which is what mobility aids are there to do; it’s just like with my crutches nicer to have something that’s pretty and expresses who I am.

Mobility aids don’t have to be drab ‘greyige’ they can be pretty and functional too doing the job they’re designed to do whilst at the same time expressing our different personalities, favourite colours or outfit choices. They also help give people the confidence to use mobility aids too, so mobility aids can be functional and pretty too.

Mobility aid purchase links