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!
* * *
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!
the myasthenia kid 
The joy is never ending for you! I am glad the Aphasia is mild. However, it can be very frustrating.
Great news in the updates.
Your mum and family will be in my thoughts Tuesday.
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Hi Bee,
as I always tell myself you can never have too much fun lol! It is very mild and tends to only cause problems if I am very tired.
Thanks for reading and commenting on my blog it is always appreciated.
Thank you as well for Tuesday. Fingers crossed it actually goes ahead this time.
Rach xx
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I was talking to Chris the night before last, we talking about a holiday, hopefully Italy and even more Florence again. The most wonderful Icecream, the best Chinese Restaurant, outside of Hong Kong, that I have ever eaten in, I know go to Florence for a Chinese, trust me you’ll never have a Chinese Takeaway from around the corner again. Then, of course there’s the Italian Cuisine, not a Domino’s or a Spaghetti Bolognese in sight. Which is good if you’re a Vegetarian as we are. Which seems to be going right of track. I’ve been talking about the things that I love most, FOOD and ITALY, and Florence of course. There’s so much to see and do you’ll still have stuff to do and to eat following your 10th visit.
Anyway, having digressed beyond expectation I’ll get to the point of this post. I was, as you’ll remember some 30 odd lines ago, that Chris and I were talking of a holiday. I was saying that we’d go to the Uffizi and the Academy of Art again and the Chinese Restaurant just 10 minutes from the hotel when I started talking about Angels coming down the road on the backs of Elephants, [No, I’ve no idea whether we’re speaking of African or Indian Elephants, and if you’ve asked that question you’ve missed the point entirely, we’re in Chaddlewood, in my bedroom with no sight of the road, let alone Angels and Elephants] now this is not an isolated incident [sorry the Angels and Elephants certainly are, it’s the total 360 degree “About Turn” that I’ve committed where there’s no link whatsoever with the subject we’re discussing]. I mean I had Casey Jones in his Steam Train complete with Cattle Catcher appearing from the clouds whilst I answering Chris’ request for what I’d like for lunch for goodness sake, can you imagine that? I can see someone in the street I’ve met once and remember their name but forget Liam’s name [he’s our son of course]. Explain that for me, if you can, I can’t. When it happens I say it’s “Age-Related Cell Depletion” but I think it may be medication related, excessive amounts of opiates can have that effect. Or it could be related to the recently diagnosed “Addison’s Disease” but as it was happening long before that I’m at a loss.
However, I also noticed that it gets worse when I’m at the brink of exhaustion. I don’t sleep at night [at all]. So I usually sleep during the hours following lunch and our evening meal. Whilst there is somebody moving around in the house. I hate the dark and the silence, weird for an ex-Squaddie but nonetheless it’s true. Soo If I’m at the hospital or elsewhere in the late afternoon it means I miss my nap and then it’s nighttime so get ready for a marathon of wakefulness. When that happens the Aphasia is mega and as you can see the “Flights Of Fancy” that can break into conversation is only made worse calling one’s loved ones by Carol, Caroline, Laura, even Rachel [not really, but you get the point] at some point Chris becomes somewhat annoyed. Anyone would think that one regularly lost complete interest in her side of the discussion and …….. well I hardly need to explain do I.
So, Rach, my point is that If this is anything like you then we’re birds of a feather, or should that be Scale, or Skin? It’s extremelly frustrating and my GP’s answer, “Avoid Conversation when you’re tired, especially if you’re exhausted” wow how to win friends and influence people. I’ll leave this to you now. I await your further stories with oojimaflip elephants.
See ya Rach, some time, please give your Mom my best. I really hope that the surgery comes off tomorrow and is successful.
BW
David
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Hi David,
Just to let you know Mums operation is taking place as I type this. As you can imagine my head isn’t in the game at the moment.
I just wanted to thank you for reading and commenting on my blog. Unfortunately the aphasia is a permanent thing for me caused by a reduced blood flow to the brain – due to low blood pressure which is steadfastly refusing to respond to medications.
I was sorry to learn that you now have addisons to boot. You have to laugh when people say “what doesn’t kill you makes you stronger” or plain biff them on the nose.
I will be updating everyone through the blog on how mum has got on. You may not have seen Lucy for a while as she is 21 weeks pregnant and vomiting for England with very bad morning sickness.
Take care
Rach x
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I should think that she’s now back in her bed resting. Don’t forget to tell her to avoid the food. She’ll recover far more quickly if somebody takes food in for her. Take it on trust from a Frequent Traveller/Serial Hospital Food Avoider Scheme Member I’ve lost count of the number of times that I’ve been an inmate a Castel Derriford and I only ever made the mistake of eating, sorry trying to eat the food once. It was putrid, it looked like a Marine’s leftover’s following a Pub Crawl down 1970s Union Street [you’re too young to know what I’m talking about]. It was not pleasant.
I’m a vegetarian and I have been for nearly 3 decades but I’ve lost count of the ways to say I do not eat fish, fish had a face and anything that had a face is not on my menu. Yet I’ve also lst count of the number of times that Fish Pie, Tuna Salad or something along those lines was deemed as suitable for veggies. Did you know that Prisoners in Dartmoor are budgeted for 10 times the amount that is budgeted to feed patients. If patients were fed nutritiously then recovery times would be halved at the minimum but they wouldn’t get their multi-million pound bonuses year on year.
So I hope that you’re Mom gets out of there as quickly as possible. I do hope that the surgery was a success and that a full recovery is on the cards. As to Lucy, another one eh? A girl perhaps? Please pass on my hearty Congrats Rach, I hope she manages to keep an even keel during this period of confinement and that the sickness goes away soon, she’ll be out of the 2nd period of pregnancy soon, usually when sickness is a major part of the hormonal imbalances.
I hope you’ll continue to welcome my submissions. I won’t apologise for being a passionate Socialist but I wil apologise for getting carried away on ‘your’ blog, next time I’ll hide the soapbox where I cannot find it.
Take care Rach,
Till the mood takes me the next time
David
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I hope you’re recovered Rach, Aphasia now. That’s a real surprise. I don’t remember you ever being short of a word or two. It must be a relief for the family.
I’m joking of course Rachel, I know well how difficult it can be. Is it due to your medication of an effect of your condition? I find myself short of a word on many occasions, I’ll be going on, you know I’m renowned for my soapbox speeches, which you’ll find on my previous post, but when I’m writing I at least can stop and think about it when I forget the word I want. When spouting invective against the Govt, The Tories and Politicians in General, and Plymouth Tories in particular I’m unusually loquacious in such circumstances. Particularly when one thinks of the utterings of one meeting between a group of Disabled People and on particular “Prospective” Tory MP who claimed that “Disabled People are less intelligent than Normal People” can you believe that. Sorry I’m digressing. Anyway over the past view years I’d find myself mid-stream when my brain stops working and a particular word will not come to my tongue yet I’m completely cognicent of the word I’m going to use, its’ shape and its’ sound and its’ most definitely its’ meaning but the bloody word will not come from my brain to the tip of my tongue. It’s the most frustrating experience anybody who loves language can have happen to them. Even more so for the audience, or what I call family and friends, so whenever it happened I would add a word which I made up to fill the gap of any sentence whatever the subject. You should remember this word Rach, it may come in useful, so long as you can bring it to mind. “Oojimaflip”. There you go Rach, A word for all seasons. You’ll make use of it. It’s a multi-faceted word that can mean anything you want it to.
My present to you Rach. I hope you don’t mind but I thought having been at a loss for words so often that you’d enjoy it.
Take care Rach, I’ve missed a few of your posts because I’ve been at the hospital too often and have been out of touch for a while. I’ll try and catch up.
Best to you, your Mom and to Lucy.
David
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Hi David,
I haven’t heard from mum yet, I had a text last night to tell me she was ok. She was full of praise for the surgeon and his team. She had problems with pain straight after the operation so that took a while to get under control and was doped up on morphine. Dad said she was much more mobile than he had expected her to be, so all good news so far.
My parents have been vegetarian since 1973, both my sister and I have been vegetarian all our lives. I was given Tuna salad at one hospital as the vegetarian option. A friend of ours was given salad with a scotch egg at Derriford! Dad is bringing food in for mum. Hopefully she will be out by Friday.
Lucy is expecting a boy and is 21 weeks today. She is suffering with horrific morning sickness and for the first 16 weeks was completely bed bound due to it. She is now suffering due to the Ehlers Danlos Syndrome because the pregnancy hormones are making her lax joints even more lax. She is dislocating at the drop of a hat. She will be having a C- section this time due to the damage a natural birth caused last time – when we were both undiagnosed.
I am a card carrying member of the labour party and have been for several years. My greatest political achievement has been to persuade my once tory boy husband to vote labour and see the error of his ways. My Great Grandfather or possibly Great, Great Grandfather stood as a communist in a General election so I am afraid you are preaching to the converted. However you are more than welcome to stand on your soap box, if even one person reads your comments and changes the way the vote it was worth it.
I hope you are as well as you can be. Most of the rest of this week will be spent resting and trying to undo the damage that the stress has caused my autonomic nervous system – it needs to resest itself somewhere closer to south of normal lol!
Take care
Rach x
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