A little divided

 So eleven days after my last post things have moved on. Albeit glacially, but given I now have use of a few more fingers, I know there has been progress. 

For a start it looks like a diagnosis. I definitely have a virus, and not in the vague, generalised way that doctors often insinuate you have one for unknown or unclassifiable conditions. No, I have Hepatitis E no less. Usually quite a mild illness, although I have hardly any of the symptoms that usually present. Maybe a bit of fatigue, but given the state of arms and concomitant analgesic consumption, it’s hard to tell the source of that. But the latest (of numerous) blood tests threw it up on Thursday, it also explains the raised liver inflammatory markers when there are no other signs of liver inflammation. It must have happened deep within said organ.

It may also offer an explanation for the rapid onset of excruciating pain throughout my shoulders and arms in the last few days of January. The key symptoms of rapid onset, that is, within 12 to 24 hours and no prior warning, coupled with the severity, and location, all point to Brachial Neuritis, an autoimmune response that, guess what, is often triggered by a virus. I’ll have a clearer idea on Thursday when I have my arm nerve conductivity tests (I hope), together with shoulder x-ray and further blood tests. Even if it isn’t that, my arms are not snapping back to life, so I suspect we still need to do what we can to find a cause.

The acute pain is gone, and I’ve cut back on the smarties, as my arms and shoulders are still inflamed, stiff and sore. Sleep has been a big problem, but even that is improving, aided by hot bath, hot chocolate and pillows placed at strategic points in the bed.

I realise I’m probably  getting close to some unpleasant physio, but I’m hopeful that the damage to the nerves is not as bad as I first feared. I still have lots of paranoid thoughts about nasty conditions I may have, as well as bouts of pessimism that this will be a permanent thing. But given I have managed two short walks in the last four days, lends optimism that there is a way back.

My family have been amazing, friends near and far have sent wonderfully supportive messages and encouragement, and my boss and colleagues have been quite simply outstanding. Better than any employer I’ve ever had, and that is high praise indeed. My boss even phoned me one late afternoon to tell me I was doing too much. You can’t buy that.

If you were one of those people who has listened, sent encouragement, good wishes or anything, then thank you, it has been an amazingly powerful in keeping my spirits up like you will never understand. In a cold, dark tunnel, with an icicle hanging over me, you were the light I moved towards. Like this metaphor.

Despite all of this, I’m still in the tunnel, and it’s still a horrible place to be in. I may not have the apocalyptic fear I had 24 hours into this episode. I also know my disablement is mild compared to those of others, and that I am fortunate to have money and resources to be able to tackle it. But the transformation that means I can not turn a key in a lock, or get a tin of soup from the middle shelf, is a stark contrast to the very fit state I had got myself into by the 3rd week of January. But I am grateful I can do things I could not do two weeks ago, velcro shoes are wonderful things.

Since I had my diagnosis of prediabetes at the beginning of December I had lost 4 kg, migrated to a very healthy diet, really upped the level and type of exercise, as well as curbed my enthusiasm for chocolate. Who knows, maybe that level of fitness has afforded a measure of protection. But it feels like a major setback from what I could do before. Knowing what I have and how to tackle it helps, sure, but it is not easy. One very major positive is that all that work has paid off in getting my blood sugar down to normal levels, albeit towards the top of the normal range. It shows I can reverse that.

So yes, it’s got better. I hope it continues as my fragile confidence can not take much in the way of physical setbacks. But I suspect it’s not going to be an easy Few months. That said, I’m determined in my usual way to face it and KBO as one of my friends would say. It’s what I do.

 So please continue to send messages like this.

I was catching my breath

“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.

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.