I started off writing this blog and it was, to be honest, a bit grumbly. I’ve not written in ages because each time I start trying to put together a post I read back through it and think it all sounds pretty negative. To be completely honest life is very tough at the moment but it’s not all negative either and I really don’t want it to come across that way. It’s seems that when life is at its toughest there are so many little moments or kind gestures and thoughts or people letting you know that they’re thinking of you that somehow it makes it all bearable. It’s also in the moments when life seems to have slowed down you almost expect it to stop that there are hundreds of things you’ve never noticed before that you’ve been too busy to spot that start to appear.
I’ve spent May pretty much living in hospital (or at least that’s how it feels). I’m currently on four trips now, all so far arranged by the GP, and we are not even half way through the month. While this is pretty rubbish and I would rather be somewhere else I made the realisation today that I have completely and utterly got over my needle phobia as I had six cannulas, injections and blood tests (attempts and successes) in the space of several hours and didn’t get stressed about it once. I also got to compete in who has the best bruise with another patient a bit later- she won but I had the most extreme telemetry reaction having lost quite a lot of skin when they changed the heart reading stickers- I’m now sporting lots of bright red circles! (There should really be hospital awards for these things). I’ve also realised that there are some pretty good people involved in my medical care whether it be one of my GP’s who even though they don’t have any appointments and aren’t in the surgery ring me when the other doctors don’t know my case so they can help, or another GP who always takes time to speak to me in Swahili and asks what I’ve been researching lately at the end of each appointment. One of my favourite nurses was working on my last visit spent in A and E and greeted me with a hug when I walked through the doors as she knew the last place I wanted to be was back in hospital. My physiotherapist also came and sat with me in A and E for a while when one of her patients didn’t turn up for their session and checked on me frequently in the ward to see I was ok. On the ward the cleaner made me a few extra cups of tea and sneaked me extra Rice Krispie cakes and a Doctor came and debated gun politics in America with me when it was quiet for a bit. So all in all while hospital is one of my least favourite places to be (realistically the worst after the dentist!) it all works out ok somehow in the end, normally by people going out there way and being kind.
In my last blog I mentioned that the hospital overseeing my case in London was planning on admitting me urgently as an inpatient for several months for further tests, to trial medication and look at seeing if I could undergo Autonomic rehabilitation. Unfortunately this has not yet happened. As the problem has been with appointments all the way along, the NHS board are not willing to agree to fund it as it’s not in Scotland. While they haven’t said no completely and keep asking for more information we have now been waiting for confirmation to go ahead for four months and are no further forward in getting an answer. While I still hope each day will bring an email telling me to go ahead with the admission my last hospital admission has also made it clear we can’t keep waiting much longer and doing nothing.
For the last few months I’ve had a steady deterioration in symptoms. I’m now able to leave the house (excluding hospital admissions) about once a month for about an hour as doing so makes me very unwell and I have to be having a very good day to attempt it. I’m having a lot more collapses and struggling to do a lot of things, so much so my Mum had to give up her job and is helping with care while we wait for a more permanent care package to be put in place. This really was not an easy decision as she enjoyed her job and I wanted to retain independence but as I kept having collapses at home doctors decided I was unsafe and this couldn’t continue. Other changes that have taken place is I now several times a day have problems with vision, and feeling my arms and legs. During these spells I can be left unable to see, or not able to walk or can drop things easily. I’m also having lots of problems eating and drinking and struggling to get enough nutrition even with prescribed liquid nutrition drinks for meals. Sometimes when I speak the sentences come out back to front and which caused great hilarity for everyone this week when trying to say, “the milk was in the fridge” I announced that the “llama was in the fridge”- no idea where that came from! While we had been reporting these things in hospital admissions as they were waiting for London no one really investigated it. However in my latest admission I saw a consultant who I hadn’t seen for ages and who noticed a huge deterioration so decided to do a more thorough examination than normal. In this she found I have now developed a heart murmur, my pupils do not respond correctly to light, my reflexes don’t always work or might not work well, I’ve got weakness on the right hand side of my body, my blood pressure is way too low and I have altered sensation in my hands and feet (if I close my eyes and someone touches one of my fingers I cannot tell you which one). While none of this is exactly good news it’s such a relief to have physical symptoms showing to a Doctor of the problems I’ve been saying I’ve been experienced so they can’t be ignored anymore.
As a result of all these changes and the continued deterioration it has been decided we can no longer just rely on getting funding for London. While it’s still hoped that this might be agreed, in the meantime I am having an urgent MRI, multiple other scans, lots of very specific blood tests and have been referred to a more local neurologist for advice. With everything declining all my latest hospital appointments in Glasgow had to be cancelled by the GP as I can’t travel for them so I’m also having to have transport arranged to get to any of these things. I’m also still awaiting genetics but the waiting list for this apparently is years!
While there is no way to view any of this as exactly positive and it’s all been horrible, pretty frightening and I’m left wondering what happened to my old life- having a slowed down life spent mainly in bed watching the world go by from my window has had its positive moments too. We have a lot of wildlife visit the garden which I’m still enough to notice throughout the day. Magnus the red squirrel, a red deer and two roe deer, five pheasants and a miscellaneous assortment of birds visit regularly which I would never have had time to notice if it wasn’t for becoming pretty much bedbound.