The title of this post can be taken both literally due to the never ending torrents of rain this week has seen and figuratively as I have had a week that has been far from good health wise.
I am officially ‘deteriorating’ only I don’t think anyone yet fully knows what that means. It just seems to be a nice medical jargon term to highlight that everything keeps going down hill fast and we’re not doing very well at stopping it or slowing it down.
Since my last hospital admission just over a week ago I’ve really not been able to pick up well at all. We’re not sure if I left hospital too prematurely (I was offered another 24 hours but didn’t see the point of staying as I felt I could carry on the medication etc just as well at home). However since coming home I’ve been in bed a little bit more than normal, which was a lot and am not managing to do much at all. It’s been tough.
The middle of last week after several days of feeling terrible I ended up in an emergency GP appointment. I was again offered to be admitted to hospital but decided to see how I got on at home with another new medication and complete bed rest. While the medication did help a bit and had the added side effect of sedation so I slept pretty much constantly, I really wasn’t managing to improve.
The weekend followed with fevers of 39 degrees, lots of pain, nausea and feeling really odd. Nothing really seemed to work. I keep losing my vision in my right eye too. All my simple bloods are fine and so it keeps pointing that this is something neurological and definitely more than just POTS (which is complicated enough in itself!)
This all accumulated Monday morning when I began to feel like I wasn’t real at all and had a sustained high pulse that would not come down to normal levels for several hours. I ended up being taken to hospital by ambulance. The first ambulance called out ended up in a ditch but the second one got me to hospital!
Hospital was very busy and couldn’t get me a bed on a ward so I spent the afternoon on a bed in resus being given IV fluids. I was discharged in the evening following a meeting with the consultant.
The meeting was fairly depressing. Basically we all know that there is something seriously wrong and whatever it is is getting worse. We also all know my hospital admissions are increasing yet other than IV there is nothing they are managing to do to treat me. Consequently I am kind of receiving palliative care treatment but we don’t even know if I am palliative. We don’t really know a lot. The consultant is getting in touch with all the departments I’m seeing and going to try and get them to collectively come up with a plan moving forward. What can they do when I go into hospital for example as the current sticking plaster treatment is not proving enough and I’m still deteriorating? What is the plan going forward if what is expected to happen?
Basically from this meeting it is clear that no one really fully knows what we’re dealing with and we don’t potentially have as much time to sort it out and work out what is going on potentially as expected.
It’s weird being in the middle of all of this. I, like everyone else, just want answers. I want to know what I have, what that means and what is going to happen. If I am dealing with something terminal I want to know how long I’ve got. Instead it currently feels like I’m just sitting at home waiting. Waiting to potentially get worse, waiting for answers, waiting for tests…
While I am attempting to live life the best I can with this all ongoing there are some days this seems incredibly tough. Right now I’m trying to finish a degree but I can’t apply for the jobs I was hoping to at the end of it and that can feel a bit pointless. I’m trying to find ways to still do things I enjoy and get out and about as much as my body allows, yet there is always a price to pay for doing so.
To add to the sense of pouring rain this week I’ve had a phone call from the autonomic unit to say there is a problem with funding. When I was referred to them I was living in Brighton and under NHS England, now I’m back in Scotland, I’m under NHS Scotland and both have different funding systems. The Autonomic Unit while serving the whole of the UK as the only department of their type, is NHS England. Right now I don’t have funding to be continued to be seen by them. Instead meetings need to take place, paperwork filled out and a funding application to be put together to outsource me as a patient. While they are confident this funding will be found due to the severity of the case this will take time and so everything has been temporarily halted until this is in place. This news was very rubbish to hear and didn’t come at a particularly good time. Still at least we know what we’re dealing with.
While I don’t intend this blog to be depressing and don’t like posting things that are all miserable and doom and gloom, I ultimately want it to be honest and this week really hasn’t been so great.
Despite this though I do still feel fairly optimistic. For all things seem pointless and difficult sometimes, I still get to do lots of things I enjoy. I have more time to read, watch things and as I don’t need to watch my weight but rather find it and gain it so my diet is filled with all my favourite food. I’ve got to learn that it is possible to adapt to a lot of things and when one week you feel you can’t cope with something, discover that next week you can find it somewhere within yourself that you can and you can still enjoy life in the process. To be honest I’ve probably learnt more these past eight months than I have throughout the whole of my degree. I just rather I didn’t have to learn it all through this process!