Image is me and my gorgeous friend Annie being very silly and laughing alot at Sands End beach near whitby. PS I’m the one in the wheelchair 😀
More hospital time today but only brief visit for physio. Interesting experience having a car actually actively increase its speed and swerve towards me when I was on the road with my wheelchair because a car was blocking my progress on the pavement. Big expensive BMW. Presumably he (and it was a flashy he driving the car) didn’t like the disabled messing up the road for him. 😀 …so inconvenient these people in wheelchairs…be interesting to see how his (apparent) perspective changed if he or someone close to him became wheelchair dependent. Though I am making light of it, it was actually quite a scary and disconcerting experience and happily very different from most drivers’ response.
Interesting to briefly reflect this evening on my journey to where I am in response to being asked – “how did my illness start, how was it that I had so many things wrong with me? ” Hard to summarise 20 years concisely but an interesting exercise and also very interesting to reflect on not only the number of related inflammatory, immune mediated conditions I have but also the number of treatment related side effects I am accruing. Steroids inevitably a major culprit in relation to this…multiple stress fractures from steroid related bone disease, adrenal failure, increased infection risk, cataracts to name only some of the most serious and those that have the biggest impact on my quality of life. I also particularly hate the bodily changes that steroids can cause – not important really from a medical perspective the change in facial appearance, skin covered in bruises, so called “Dowager’s hump at the top of your back etc can have a major psychological impact even in the context of fully recognising the importance of the steroids for symptom control, even potentially being life saving. It’s not helpful to have people point out their usefulness to you if you do complain about the side effects – most people on steroids are fully aware of their benefits – but that doesn’t stop you wishing you didn’t need them and/or they didn’t have so many drawbacks.
In so many ways a wonder drug – and certainly a significant contributor to my own survival – corticosteroids (different from those weightlifters abuse which are anabolic steroids) were first used to treat rheumatological inflammation in 1948 ( a patient with rheumatoid arthritis). By the time I was born in 1961 all the many toxic side effects had been described and protocols developed to try and minimise these side effects. Combination of steroids with other drugs that reduced inflammation was begun in the late 1950s to try and minimise the dose of steroids used, so called “steroid sparing” and although the range and sophistication of steroid sparing drugs has increased enormously over subsequent decades, steroids remain a critical part of the rheumatologist’s drug armoury and undoubtedly continue to improve and even save many lives despite their drawbacks. Like most patients on steroid treatment there is an ongoing struggle to balance my wish to reduce my steroid dose because I hate the side effects against my wish to have sufficient disease control and enough energy to actually be able to function on a day to day basis. It’s also quite amazing how the most minimal reduction in dose can send me crashing down disease/symptom wise, a phenomenon very well described by patients on steroids long term.
Currently I am attempting to very slowly reduce my steroids hoping that over a period of months the benefits of the wonderful Anakinra will allow me to get them down to an acceptable dose. Fingers crossed – and at least the Anakinra means I can actually cross my fingers, at least on my left hand. A reduction in rib fractures and some strengthening of muscles and tendons would be especially welcome right now. Quite hilarious what minimal trauma can cause a rib fracture in me – part of the black comedy that represents my life. And I have to try and look on it as some sort of bizarre, black comedy to enable me to laugh (with others) as I stumble (literally and metaphorically speaking) from one crisis to another. Fortunately I am supported, surrounded and loved by people who share my quirky black humour so that we can laugh together about crazy cripple hating drivers, my “shaking stevens” tremor and the associated catalogue of breakages, loss of control of my off road wheelchair in the woods, getting stuck in the Starbuck’s lift(again) and so much more. Life is a major struggle if you’re seriously disabled and chronically ill and inevitably full of daily hiccups – a sense of humour is absolutely essential to daily life and psychological survival. There is even evidence that laughing has significant health benefits even if it’s forced out when you feel like crying.
And of course crying is important too – some days are just days when you can’t be the strong cheerful one anymore and just for that day need to crawl under the duvet and wait for the next day.