If you follow me on Instagram (and if not, why not?), you may have read a recent post in which I described my life with chronic disease as like walking a tightrope. It got a great reaction, so I thought it was worth expanding on here.
First of all, this isn’t about being “inspirational”, it’s simply how I see living with chronic illness and it’s an analogy that works for me. If it helps others get an insight into the life of ONE person living with a disability that’s a bonus, a positive benefit but this is just my experience, my take on life.
So why have I chosen tightrope walking as a way of describing my life? Being successful as a tightrope walker requires practice and lots of it. Successful tightrope walkers practice as much as they can, especially before a performance or new challenge, but however good they are there is always the chance they might lose their balance and fall. This is why they have either a safety rope or net to catch them and hold them. The third element is the pole most use to help them maintain their balance. Finally, there is the element of planning involved in a successful walk.
I practice this daily, I have to I have no choice as chronic disease and disability isn’t something you can pick up one day and drop the next, some days the practice goes well, I walk the tightrope confidently with my days plan firmly in place, my pain is bearable and my body is behaving reasonably well. I achieve things and on my best days I even manage to forget all about Claudia (my nickname from my particular combination of problems) for an hour or two.
I always carry my pole with me it’s crucial in helping me get through each day and is made up of a number of different things all of which played their part together without which my pole would fall to pieces and I would fall off the tightrope. My pole is made up of so many things. Tools and gadgets that make everyday tasks such as opening cans and jars easier. Exercises, mindfulness and relaxation play their part to along with distraction activities which may include reading and of course my jewellery making. Prescribed medications which I would not be without as they play such a crucial part in managing my pain. All these and more help me to keep my balance.
Planning is vital. I tried to plan out my daily activities so that the essentials get done and because writing it down helps me avoid trying to do too much in one day. It’s also about planning ahead as even fun things like going down to visit my family and have a couple of days being a granny have to be balanced out with periods of rest and relaxation after and when possible before. Sometimes things do get busy and all come together at once or I have a couple of good days and try to get extra things achieved and this is often when I lose my balance, fall off the tightrope and need to be caught by my safety net.
My safety net? My custom-built reclining chair, my beautifully comfortable bed, Radio 4, audiobooks and my wonderful daughter. On my worst days even making myself a mug of tea becomes a huge effort! On these days even watching something on TV is too demanding and audiobooks really come into their own. Sometimes I know what the trigger was, sometimes I don’t but what I have learnt over time is that the only way to get through these days and then start climbing back up to my tightrope is by giving into them. It’s hard, one of the hardest things for me in fact as I find just doing nothing surprisingly difficult - other days can be tough because although I want to do something my hands and arms are just too heavy and too tired to do much and days like these are my “Netflix and chill” ones.
Life for me since Claudia came to stay has changed. I don’t try to fight against my arthritis and its friends – that would take too much energy and would be pointless as they are here to stay. Instead the way forward for me is to do my best to keep walking that tightrope, knowing that there will be days when I wobble or even fall but that I have everything in place to help me get up there again. Walking the tightrope can be challenging but it’s not impossible!
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