A few weeks ago I made a post called just a short one which essentially focused on my being told I had to go to London, kings college hospital no less. For me and my husband the first decision was whether to take the car or train. Although more expensive and a little more uncomfortable we decided that as it was going to be easier at the end of the 14-15 hour day we were facing that just not having to at the end of that day was the best option. The reason for this trip is that I am having dementia type symptoms. I muddle words up, sentences don’t come out right and my short term memory if that of a goldfish which is just a few reasons why my husband is my carer.
So that long day began at 5:30am, I have come to a point in my disease ridden body that I’d forgot there even was a 5:30 in the morning. Some people have trouble sleeping with illnesses like Lupus, Fibromyalgia or Chronic Fatigue syndrome (alternatively chronic fatty syndrome if I’ve had a particularly bad time of it.) I have no trouble sleeping at all I have somnolence, I can just sleep on cue and often fall asleep whilst people are talking to me or in the bath and even on the toilet when I wake in the night for one of those really big wees. I imagine there are people out there that would love Somnolence but for me, once again is the guilt and anxiety that I’m snoozing my life away as my children grow around me.
So our train journey to London was long but having my husband by my side was comforting, but again I had that nagging guilt that if it wasn’t for me he wouldn’t need to be doing this at all. We only had to change trains once; main problem was it was the rush hour. I had seen on the TV where people are packed in a train like caged hens but had never experienced it before. I hobbled on walking stick in hand, pins and needles in my legs and joints that were burning and felt ready to burst. Of course they were mostly very important, young, career focused commuters with their laptops out and phones pressed almost to their faces never. But to my surprise not even one offered me a seat. We were pressed together as cattle but more and more people kept getting on. I did wonder after whether I’d have been offered a seat if I were older. So the stop before ours we tried to make our way to the exit ready to get off. Holy shit, every single person looked at us like we’d just pissed on the fancy, shiny (I work in London don’t you know) shoes, I wish I had looking back.
Finally we made it to kings collage (Spell check wants me to put village which is perhaps a better description.) The main hospital is huge anyway but then they have other buildings around the area but not actually attached for the maternity unit and a whole building for depression and anxiety, (Was sure I’d need this place too at the end of the day. Walking in, to me, was like Alice falling down the rabbit hole. This is the scary part for me, at only 35 I just stood starring at the map of the hospital on the, I could see that the hospital had been colour coded which is supposed to make it easy but I just felt so confused. Once again my husband took my hand and guided me to where I needed to go. Thank You my sweet.
So I had to check into the PIU, which stands for something investigation something, I think. Once again the National Health Service never fail to amaze me they could see we had a long day ahead and tried to make me as at ease as I could be. First blood tests, as most of you will know are as regular as clockwork. Those were to make sure I could have a lumbar puncture later on that day. I have flat veins, I don’t know if this is common with the health issues I have or just me? But the poor nurse felt really bad as she poked hole after hole in my left arm and then my right, finally with success. Again I don’t know if it’s just because we have needles so often but I can’t feel them anymore, still left with sore bruises but no pain at whilst they are rummaging around with the needle in my arm trying to get that illusive but extremely important blood.
Once again we were off, this time to the basement where the nuclear medicine department is. This was for a pet scan of the brain with radiation injection. If you don’t know this procedure you are first put in a small cubicle where a cannula is fitted. They inject you with radiation and tell you to rest in the dark for 20 minutes, no contact or stimulation allowed at all, just relax. Then a nurse creeps in like the secret lemonade drinker and injects you, again, in silence. I lay there in the dark trying to keep my brain empty but it’s very difficult when the nurse next door was talking loudly to an elderly man with hearing difficulties about what he’d eaten the day before and when. Then that come a get you, walking you through what seemed like super trooper lighting into a once again dark and freezing cold room. It was only 10 o’clock but I was already fatigue as my body had already had enough. I tried so hard to stop myself from twitching and shivering in the machine I was worried they would make me do it again. Thank god I didn’t have to but still my body ached and shook as we tried to find somewhere comfortable to sit.
There was an hour and a half until my next appointment, we would have loved to have a little walk around the area but I was knackered. Didn’t want to think about wheelchair’s at this point in my life but otherwise I and consequently my husband are stuck indoors because of how weak I get now. Falling over and dropping things are just another part of my independence literally slipping through my fingers.
Part 2 to follow. (Don’t get too excited)
Thanks for reading.