Procrastinators of the world unite……..tomorrow

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.

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What’s the word I am looking for?

One of the symptoms I have developed since becoming ill or should I say sicker to the point where it could be ignored no longer is Aphasia. Its pretty mild and fluctuates on depending how tired I am. I mainly struggle in finding the right words for objects or replacing the word with a completely different one. Names are also a problem, I can run through all the male names in my family before calling my husband by his first name and that includes the dogs names before I get it right.

Yesterday for example I thought to myself “I must really decaffeinate myself again” (it even affects the words in my thoughts). I didn’t intend to go caffeine free what I actually meant to say to myself was “I must really catheterise myself again” as I hadn’t done it for around a week and I am still in the practising stage. That one really made me laugh however there are times when the aphasia is so bad I can only retrieve one word for multiple objects. It becomes incredibly frustrating for me and poor hubby can really struggle with translating what I really mean.
It is exasperating for me as 9 times out of 10, the word is there on the tip of my tongue, it’s just when I go to say it, it is replaced by another word. Other times I can not remember the word at all and this usually happens when I am utterly exhausted. My brain can not retrieve the word nor come up with a suitable replacement. For someone who loves words, who writes and just wants to say a simple sentence out of all the crazy symptoms this one alone can drive me to tears.
A few weeks ago every object I went to name came out as “sofa”, not at all helpful when the words you wanted were coffee table, washing machine or bookcase. The scenario was my husband had mislaid his keys, I knew where the keys were or had an idea. When I tried to tell him that his keys were on the coffee table it came out as “the keys are on the sofa”. For around five minutes I persevered with trying to give him places where his keys were, all the time replacing the correct word with sofa. I felt like the village idiot and it didn’t help my husband find his keys.
There have been some hilarious moments with the aphasia when I have replaced words with something quite ridiculous. A few years ago hubby and I were driving along a narrow country road with low hanging trees. All over the road and the hedgerows there was hay that had been strewn from a passing vehicle. I turned to my husband and in all seriousness said “There has been a big helicopter through here”. My husband started laughing and replied “I think you mean lorry (truck)”. How on earth my brain thought a helicopter was remotely like a lorry I have no idea. With aphasia you know what you mean and in your head the sentence seems correct until someone points out your error. Other times you are left struggling to complete a sentence as your mind goes completely blank and for the life of you, you have no idea what the words is.
I have also sent my husband on countless fruitless searches for things when I have known the location of something but sent him to the wrong place. One of my favourite locations to name is the shed. I seem to have the word shed permanently on the tip of my tongue. So much so that hubby will ask me to repeat myself if he knows for sure that something like my many hot water bottles are not stored in the shed. My second favourite location is the airing cupboard, usually said when my husband has asked me to repeat myself. Again he knows more often than not that the item requested is not stored there. How he doesn’t brain me through sheer frustration I have no idea. I honestly do not think I could ever be as patient with him as he is with me.
I have raised the aphasia with my consultants who have put it down to cerebral hypo-profusion – as in not enough blood / oxygen getting to the brain. It makes perfect sense to me as this is something that has developed over the last few years which is when my symptoms have rapidly worsened.

The weirdest thing is my ability to swear (curse) has not been effected at all by the aphasia. Those words come to me very easily unfortunately!

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Mum update

Mum’s operation has been rescheduled to the 28th April – next Tuesday. If she has had her operation I will update you in my blog post next week.

Baby update

My sister had a scan last week and she is expecting a ………..boy!

Hospital Stay Update

As far as hubby and I are aware I will be admitted for tests w/c 11th May.

Health Update

I have cellulitis again. 5th bout in 10 months deep joy!