Woke up at 12:17am, 03:30, 04:52 and 06:55 stiff, in pain and unable to roll over.......stupid arthritic back and hips. Kids are up and at 'em at 7am on the dot. I would say eager to go back to school following the half term jollies which saw them explore Stonehenge but I suspect not.
Today I have to go through the rigmarole of my monthly blood test to make sure the medication for the RA and PsA is beating the disease into submission and that my liver isn't throwing a major strop in the process. After getting dressed......including putting on tights which is like bending tree trunks and manipulating the unbendable to wrap in lycra and nylon. Daily morning meds taken....I get the bus to the hospital. Get ugly looks off the older folks for using a freedom pass and then sitting in a disabled seat.......they must think I've stolen the pass or something, but when I make eye contact they look away.
Arriving at the infamous Queens Hospital I make my way to the vampires waiting area and take a ticket......219......The number on the board is 133, it's going to be a long wait me thinks. T setting switched on on the hearing aids and I take out my kindle and chuckle away to myself reading John Bishops autobiography while waiting for my number to be called for the rather cheerful vampire brandishing a sharp needle to extract the required amount of my precious red stuff to check if the meds I plough into my body everyday are doing their job.......it was an hour and a half wait and took 2 attempts to stab the right place.
This afternoon I had the honour to talk to a group of lovely people at Arthritis Research UK about my experiences of living with arthritis. I take my time getting there in the hustle and bustle of London so not to use all my spoons beforehand. The group is friendly and welcoming an I run through my presentation. I had forgotten some of the photos which had been used and keep having a chuckle. The talk goes well and there are plenty of questions asked after. It's important to me to do these talks, raise awareness of arthritis and other invisible illnesses to break down barriers and misconceptions. It's charities like ARUK that give people like me hope for the future through their research and support.
Heading home it is bitterly cold and I am fast running out of spoons. Pain and fatigue are encompassing my body. A voice comes over the tannoy speaking in a language incomprehensible which, when translated by the frustrated lady standing on platform 3 of Mile End station says the glorious District Line has severe delays.........deep deep joy.
I decide, for my own sanity and safety, to step back from the barging hoards of non-smiling lemmings trying to make their way home from the rat race. Eventually a tube arrives that I can manoeuvre my stiffening body on to. The London Underground is not fully accessible for disabled people and the challenges faced by people of limited mobility blur into insignificance in comparison to the cost of upgrading the whole of the underground network.
Doing the talks and raising awareness for invisible illnesses including arthritis has shown me how much I have achieved despite the challenges I face. I continue to play the hand I have been dealt. I like to think I am a positive person......I don't moan continuously about how unfair this all is and not constantly questioning "why me?" I will continue to support those who feel lost and consumed by these challenges because it gives me purpose and I am proof that because my life has changed in ways I never dreamt of, it doesn't mean my life is over.
Until next time......Use your spoons wisely and keep pain free xxxx
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