For the last few days I have been in a bit of a funk, not enough sleep, too much pain and ridiculous brain fog / confusion will do that to a girl. I try very hard not to worry about the confusion but I have to say Sunday’s episode scared the living daylights out of me.
I have of late had horrendous neck pain, it wakes me during the night, in the mornings I can be ok for an hour or so and then the pain starts. Initially it feels like someone has given me a swift smack with a shovel to the back of the skull. Then the pain travels to between my shoulder blades and down my arms. Any movement of my head outside of a neutral position increases the pain. Whilst typing this there have been points where the Chromebook has nearly been thrown out of the window due to frustration with the pain.
Sunday was one of hubby’s days off, time together is precious as of late pain and the lure of the current storyline of The Archers (soap opera on BBC Radio 4 for my overseas friends) has meant it’s bed time just before 7pm. We had a list of jobs that we wanted to get through one of them being cooking hubby’s meals for the month ahead. We make a variety of things chicken casserole, chicken curry etc and put in the freezer, portioned out ready for when he gets home from work. I say “we” but really he does the bulk of the work due to my inability to hold a knife for a long period of time without my hands giving up the ghost. I like the time we spend cooking as we chat with no distractions other than Mollie (dog) begging for bits of raw vegetables broccoli and cauliflower being a particular favourite.
I have found the longer I sit up, the worse the headache becomes unless I wear a soft neck collar or lie down. The soft collar is something I hate wearing, it is mainly vanity, I look hideous with a neck collar on. I know it's hardly haute couture on anyone but to me it marks me out as someone who is disabled, I am the same about the wheelchair however the neck collar is something I am struggling to accept. Despite it being rather a necessity these days to stop the headache as I can’t spend my life horizontal. I didn’t wear it Sunday and the pain in my neck / head / back and arms increased to a horribly violent level. I also noticed that the longer I sat up the more confused I was getting.
When I say confused it is more like I can’t remember things, I suppose in the grand scheme of things it is a kind of confusion. It was so bad on Sunday that it freaked out both of us. Whilst we were cooking, I pointed to a kitchen utensil, I just couldn’t remember what it was called. Now before I got sick I did all the cooking, I loved having people over for Sunday lunch etc. So to not know what the utensil was called frightened me.
This was the conversation:
Me: “Jay what is this called?”
I saw the look on his face that was saying what the fuck is going on? I think initially he thought I was either joking or testing him. When I asked again he knew I was serious so he asked me
Jay: “What do you think it’s called?”
Me : “ A cauldron”
I knew in my head that the utensil I was pointing to was not a cauldron, there could be a tenuous connection to a cauldron, so I was going along the right track. I knew in my head that it wasn’t a cauldron but the word wouldn’t come.
Jay: “It’s a ladle”
“I knew it wasn’t a cauldron” I replied followed by a nervous laugh. I then left the room heart pounding because I was so wound up by not knowing what it was called.
I can’t lie this latest bout with mental confusion upset me and shocked me enough to make me realise it is time to take it seriously. I am still really concerned by it. To have a complete mental block like that isn’t unusual however the cauldron / ladle incident was just the first of many on Sunday. What I found really bizarre was that I could type fine but my speech was the issue. It seemed the words were getting lost on route from my brain. I was doing my usual of replacing the word with a completely different one, that is normal (for me) but to be unable to name a household object and know the word I wanted to call it was completely wrong was distressing.
Hubby was frightened by it too although he did his best to cover it up. Explaining that I was just probably tired from helping him. I have been tired before, it’s never happened. I don’t think either of us can keep making up excuses for the level of confusion that I am suffering from - forgetting if I have taken my tablets (when you take opiates it’s quite important to know), forgetting something immediately after I have done it ( I spent 15 minutes looking for a pillow today, I had put it on the bed seconds earlier), forgetting what shift my husband is working, forgetting what day it is and being completely convinced it’s a different day. It is getting worse and I can’t keep on burying my head in the sand thinking it is going away because for weeks now it hasn’t.
The problem is a few months ago I spoke to the doctor after another particularly bad bout of confusion. I had completely messed up in my head what shift hubby was working, which resulted in me making a snarky phone call to him asking why he hadn’t rung me on his lunch break. The problem was it was now 2pm and he had started at 1pm, his lunch break was hours away. I had forgotten he had been with me all morning in the hour he had been gone. I was also at that time messing up taking my medication taking too much or too little. The doctor helpfully suggested that I write down when I took the medication failing to realise that firstly I had to remember to write it down and secondly remember to look at the notepad before taking any more. When you already have memory issues asking someone to remember more is not helpful.
I know memory lapses are normal, we all have moments where we walk into a room and forget what we have gone in there for. I understand that, what I don’t understand is why at the age of 42 I am struggling with basic things like friends names, some of these people I have known for over 10 years. I struggle to remember to keep in contact with friends thinking that I have only just text them / seen them. It’s not that I don’t want to keep in contact, I just forget.
Before I got sick I had a photographic memory, I could read a policy document, ascertain the salient points and brief the rest of the management team after barely a glance. Now I am lucky if I can remember important dates on hospital correspondence. To go from that high functioning to this is distressing. It is the not knowing why it’s happening or if it is likely to get worse that bothers me.
My long-term memory seems largely unaffected, I may get hazy over exact months but I know the year. I may struggle to explain a memory due to the fact I can’t remember the words (that items, jobs are called) but on the whole it’s all still there. I can recall important dates from my life but things like my parent's wedding anniversary had me foxed in February. I couldn’t remember what the date was and was convinced it was the day after the actual day. I had to check on the “On this day” section on Facebook to ensure I had got it right. This is something we have celebrated as a family for years but now suddenly I don’t remember? It doesn’t make any sense to me.
I spent years trying to get doctors to pin down a diagnosis. Those years spent without one were deeply frustrating. I couldn’t bare to go to the doctors about my memory issues and be told they don’t know what’s causing it. On the other hand I am driving myself insane with worry with all the things it could be. I need to stop putting it off and just make a bloody doctors appointment.
Procrastinators of the world unite…..tomorrow.