“Sometimes, I wake at 4 in the morning, Where all the darkness is swarming, And it covers me in fear”
Well, here we are, 4AM in the UK and I can’t sleep. Not because anything is occupying my mind but because the pain in my shoulder joint just won’t let me. This is despite the painkillers and anti-inflammatories. Guess I got that dose wrong.
Fortunately I can tell most of this story with a simple cut, paste and edit from an earlier message to a friend. Modern life may not be solving one problem, but it certainly makes this public broadcast easier.
I have become a medical mystery over the last few days. I’m ok in myself (as we say - but what does that mean?) but have been through the mill a bit since last week. I spent most of Friday at ED because of unbelievably agonising and continual sudden pain in the joints & muscles of my arms and shoulders which started out of the blue last Wednesday afternoon.
They’ve got the pain stabilised now with some strong painkillers and anti inflammatory stuff (although there is still a fair amount of pain) and I’m undergoing all kinds of blood tests to see what it is- they don’t really know. Lots of theories ranging from Lyme disease to an autoimmune condition called Parsonage-Turner syndrome. My money is on the latter, as it fits with our family history. But to be honest, I’m past caring what, I just want it to stop.
I’m off sick from work, unable to do much and pretty tired- I can barely move my arms. I can type with a couple of fingers, a lot of the others have a numbness and pins and needles. The internet is, of course, a curse. I imagine it spreading to other parts of my body, or to my breathing muscles or heart. Or I find conditions which will have me dead in a week.
Obviously I can’t ride a bike, or drive or even walk far. I can type with one finger of each hand but can’t write or put on clothes without pain. I don’t care about not riding, to be honest I don’t care if I never ride again, I’ll trade anything to have this sorted. Yes, we are even into “deals with God” territory. And I’m a staunch atheist.
Needless to say the British health response has been patchy. The Hospital was generally perfunctory. I’m not talking medically, because there is little more they could have done. It’s more the complete lack empathy and understanding of what I am experiencing. I do realise they are under a lot of strain too, and some were lovely, it’s just they are not set up to deal with this right now. Maybe I have unrealistic expectations.
I’m not asking for anything from anyone, just a bit of understanding. I have lots of dark thoughts in the last week, and I’m very frightened. Typing this has helped that too, for I don’t know what the short or long-term outcome of this will be. But I have retreated to Dr Lucy Hone’s excellent TED talk on resilience. Everyone can find it at this .Link.
She talks about how resilient people have three key attributes, and they help too:
I have become a medical mystery over the last few days. I’m ok in myself (as we say - but what does that mean?) but have been through the mill a bit since last week. I spent most of Friday at ED because of unbelievably agonising and continual sudden pain in the joints & muscles of my arms and shoulders which started out of the blue last Wednesday afternoon.
They’ve got the pain stabilised now with some strong painkillers and anti inflammatory stuff (although there is still a fair amount of pain) and I’m undergoing all kinds of blood tests to see what it is- they don’t really know. Lots of theories ranging from Lyme disease to an autoimmune condition called Parsonage-Turner syndrome. My money is on the latter, as it fits with our family history. But to be honest, I’m past caring what, I just want it to stop.
I’m off sick from work, unable to do much and pretty tired- I can barely move my arms. I can type with a couple of fingers, a lot of the others have a numbness and pins and needles. The internet is, of course, a curse. I imagine it spreading to other parts of my body, or to my breathing muscles or heart. Or I find conditions which will have me dead in a week.
It’s also horrible seeing people around you powerless to help, and yet at the same time they do help. Mrs Mendip Rouleur - wow, what would I have done without her. Practically of course, but emotionally she has been amazing. I’m so glad she picked, and stood by, me. My family have all rallied round too, my son, brothers and particularly my amazing sister, probably the best Nurse in the world, and undoubtedly the best Sister.
Beyond that my friends, colleagues and boss have all been brilliant too. Understanding, supportive, and keeping my spirits up despite the limitations caused by this pandemic.
Obviously I can’t ride a bike, or drive or even walk far. I can type with one finger of each hand but can’t write or put on clothes without pain. I don’t care about not riding, to be honest I don’t care if I never ride again, I’ll trade anything to have this sorted. Yes, we are even into “deals with God” territory. And I’m a staunch atheist.
Needless to say the British health response has been patchy. The Hospital was generally perfunctory. I’m not talking medically, because there is little more they could have done. It’s more the complete lack empathy and understanding of what I am experiencing. I do realise they are under a lot of strain too, and some were lovely, it’s just they are not set up to deal with this right now. Maybe I have unrealistic expectations.
Of course, you may be thinking, it’s only a week, and it’s only some pain in your arms. I do appreciate others have things far worse and for much longer. And Thursday may bring some answers when the latest set of blood tests return, or we try other avenues. Things are looking up as at least now I feel I’ve got a good Local doctor on the case, so we’ll see.
I’m not asking for anything from anyone, just a bit of understanding. I have lots of dark thoughts in the last week, and I’m very frightened. Typing this has helped that too, for I don’t know what the short or long-term outcome of this will be. But I have retreated to Dr Lucy Hone’s excellent TED talk on resilience. Everyone can find it at this .Link.
She talks about how resilient people have three key attributes, and they help too:
1. The awareness to realise that bad things happen to almost everyone, this is a normal and natural part of the human experience
2. Focus on what you can change, and ignore what you can not.
3. Ask yourself, is what I am doing helping or is it hurting?
You might be thinking why am I even writing this? The answer is really very simple. I can’t sleep and this passes the time and takes my mind of my shoulder. You realise a lot of things about how you use different muscles, and for what tasks and activities, when you can’t use them. It turns out that shoulders are really important in the sleeping process. The good news is that my next meds are due soon, it’s taken that long to type this. So just doing this post has been really helpful in getting me through the night.
Football is playing it’s part for me too, as ever. Despite the Irons capitulation on Sunday, the compression of the football season means there’s another game here already this evening. Of course we may lose, but it’s the best season for a long time.
Hopefully the painkillers on an empty stomach will induce some sleep, and if they don’t, there’s Netflix, or BBC Sounds or any one of hundreds of other options. Or just the music to send me somewhere else. I am, after all, Winscombe’s biggest Taylor Swift Fan
Take care of yourselves.
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