This is just a short blog to air not only my appreciation but frustration with the recent issue I’ve been having. About a year ago I began having memory and cognitive issues. For instance I would look at my phone or the thermostat and suddenly forget how to use them. I’d also get words wrong or even whole sentences would just be gibberish. I was sent to my local neurological clinic which only usually deals with geriatric patients, that was embarrassing. They assessed me and told me I had frontal lobe atrophy, in short, the front part of my brain has shrunk. The part which controls memory and cognitive function. They then sent me to a specialist at a hospital 50 miles away for a consultation. It took us an hour and a half to get there because of traffic accidents, three separate incidents on the same stretch of road within minutes of each other shut down the whole road. If we were religious I think we’d have turned back.
Strangely we didn’t wait too long in the waiting room before we were called in. He told me I had empty seller syndrome, which I knew, but also that I was suffering chronic migraines. Don’t you just hate it when every new Dr you see bestows upon you a new diagnosis? Anyway he insisted that I go to king’s college hospital in London which is a long way from where I live, never mind trying to traverse through London itself. They want to find out if the lupus is attacking the brain or if it’s something else. I got my appointment within a week and my itinerary is, 9am blood tests, of course, when don’t they want blood. Then straight in for a pet scan with the radiation injection. At 1pm an EEG which as far as I know is some kind of helmet goes on your head for about an hour. Then last but not least at 3pm I need to have a lumbar puncture, I sort of know what it involves but I am scared as it’s meant to be painful. If anyone has any advice or insight about it I’d be happy to hear it.
So although I really appreciate the care I’ve had from the NHS for the last 10 years those tests, all in one day, at a hospital miles away seems exhausting, even for a healthy person. I tried to tell my GP that it would be too hard for me to get there as my husband has to get our son to school and my mental and physical state means I can’t get there by myself. This is what frustrated me she just kept telling me over and over you’ve got to go, you’ve got to go. She even insisted that we take our son out of school and traipse him there with us. Now I don’t know about the schools in your area but if our kids nave a day off school without a bloody DR’s note they call the army in. Anyway I have kept my kids relatively in the dark about this situation, they only know what they need to and I won’t risk causing either of them extra worry if it isn’t necessary.
I called the Hospital and got the answer machine,typical, I ended up leaving an awkward message saying I can’t make the appointment and therefore will have to cancel. Of course with my divvy brain I didn’t give her a number to call me back on but she still managed to find it. She called at 7:30am, the next morning. My husband who is also now my carer knows that if he woke me at the hour he’d just hear a series of growls from my direction. Partly because of chronic fatigue syndrome and partly because of the medication I’m on makes me not want to get up at stupid o’clock. So he said I would call them back later but obviously I wasn’t quick enough as she called again at 9am, I doubt even a stalker would have called that soon. I opened my eyes as my husband shoved the phone in my face and said it’s the hospital. I did a little cough and licked my lips hoping to convince her that maybe I’d been up for a while, I was not convincing, at all.
In conclusion we managed to sort out a date during the half term so our eldest son can look after our youngest, my brother going to drop in on them and I just feel so much better about that situation. At least for now anyway. I have a feeling as the date gets closer I’ll be just as anxious about the appointment but less worried about the kids burning down the house.
Thanks for reading.
PS. If any of this blog has shitty grammar or is confusing, my brain apologises for its performance today. Also my husband would usually proof read but as it’s a short one I gave him a break.