Ice Cold in Cornwall
I went to Cornwall for the weekend with friends.
Cold wasn’t the word for the weather.
Icicles at Boscastle
This was the walk by the river in Boscastle. In the end we retreated to the Wellington Hotel for some delicious hot chocolate. We also had an early dinner there before returning to London. The menu was very coeliac and vegetarian friendly.
I had some delicious liver and bacon. All that B12 seems to have freshened up my skin quite a bit.
How Am I Doing?
I’m going to see my Doctor at Addenbrooke’s tomorrow, so I thought I’d write down a few notes.
If I start with my body and move downwards from the top of my head, I can summarise it as follows.
I was suffering a sort of itch and a sensitive scalp, but that seems to have reduced and almost stopped since, I’ve started taking the Amitriptyline. I’m only on one 10 mg. tablet a day and I take that just before bed, so that it helps me sleep reasonably well.
My brain seems to think clearly and I’ve started programming again. I do think though, that some of my memory functions aren’t too good, in that I make a mental note to do something and then forget it a few minutes later. But the long-term memory is intact and I can remember funny tales from years back with ease.
My eyes now seem to be working better, in that I have no trouble seeing anything as I walk around. Although, obviously, I’m not driving or even cycling. I also find that I can’t see the ball when I try to play table tennis. But I can use binoculars to look at things like the moons of Jupiter, which is something I couldn’t do when I left the hospital.
I do seem to have gone a bit deaf, but then I was always going that way.
I still have pain in the left side of my face and it gets worse as the afternoon progresses towards evening. I suspect this is because the Amitriptyline I took the night before is wearing off. I find too, that typing on the computer gets more difficult from about three and my eyes are tired.
My mouth is a bit sore, as my teeth tend to catch the inside of my left cheek. It could be that I’m cutting a Wisdom tooth, but my dentist is a long way away in Felixstowe. In addition, my teeth never seem clean. I wish there was a walk-in dental hygienist!
My right arm is a hundred percent, but my left hand is still a little wayward and there is pain the wrist. I can though now wear my heavy Rolex again, which C left for me as her last Christmas present. It has the inscription “J Xmas 2007 and Forever C” and I feel undressed without it.
I do find trouble reading newspapers, as I find it difficult to separate the pages. I had thought this was due to the stroke, but my friend, John, at the football has the same problem and he’s a fit farmer, who’s about my age. He reckons it’s the papers and the ink they use! So perhaps it’s just old age again!
There is also pain in my left humerus in the old injury, where the bully broke my arm at school. Again it gets worse as the day progresses.
I have been working on my core strength and don’t seem to suffer any pain or reactions in my trunk at all.
I do however have a bit of a problem with a mixture of constipation and diarrhoea. That’s probably the best way to describe it, as sometimes I find going a strain and at other times it’s loose like it was for most of my life before I was diagnosed as a coeliac.
Incidentally, when I typed that last paragraph, I just typed diarrhoea right for the first time in my life!
My legs are fine, although I do suffer the odd cramp at night in my left shin and my varicose veins are getting worse. But compared to my parents’ ones, they are minor.
I’m eating well and I’m now just about the same weight as I was this time last year of about 58.5 kilos stripped.
One slight problem is that I always seem to feel a bit cold during the day. But as I said, I’m sleeping well and am very warm in bed.
As to getting around, I have no problems, that others don’t have like late or missing trains and taxis that take forever to come. But how many who are recovering from strokes, have travelling as far as Inverness, Edinburgh, Middlesbrough, Sheffield and Crewe without any special assistance? I can’t wait to get to my new house in London, from where I can really explore the country.
I’m also managing well with the Warfarin. But it’s a system that is so antiquated and ill-thought out, that something should be done to create a proper National Anticoagulation Service, possibly based on pharmacies and the Internet. But I’ve not missed a correct dose and save for the odd small nose bleeds, I’ve not had any trouble.
I also think I felt a bit better after last Wednesday when I had my three-monthly B12 injection.
So let’s face it!
I could be much worse.
I sleep well, get tired, cook everything I need, travel where I want, but just feel trapped living in the country with a bit of nagging pain.
I’m moving so the first problem will go and I hope that the pain will fade away with time.
One In and One Out!
I had a bone density scan some weeks ago and as I’ve not heard anything, I asked the nurse to see if there was anything on their computer, when she did my Warfarin blood test and gave me a shot of B12 today.
There wasn’t any news and judging by how I feel, my bones may not be tip-top, but they certainly aren’t in falling apart mode, as I would have hoped that I would have been called in for the bad news.
It strikes me that there could be a big increase in efficiency here, with possible cost savings!
If you have a test that can be quantified accurately and you are well on the right side of the problem level, surely, you can be told the results either by a more or less standard e-mail and/or letter.
With my bone scan, it might say that I’m reasonably fine, but I should come back for another scan in say six months. A copy could also go to my GP, so she would know as well. I have a feeling, that a lot of communications from hospitals to GPs are actually letters not e-mails and are scanned in the surgery. If I’m wrong, which I hope I am, about these letters please correct me!
There must be hundreds of instances in the NHS, where a sensible bit of automation could save money and redeploy staff to more important duties, than writing lots of similar letters.
We are seeing instances of automation, like appointments systems that text you reminders, but we need to see more. I personally would like to see a better system for anti-coagulant testing.
Now I’ve Got A Gammy Knee!
Over the last couple of days, I’ve had a minor difficulty getting up from a chair. I was just getting a bit of pain in my right knee. I had to see the GP yesterday and she looked at it. I had thought it might be something to do with the stroke, but it was just a touch of arthritis. As I was seeing the physio after the GP, she had something else to do and she gave it some therapy. It’s a lot better this morning.
The gastroenterologist I saw on Friday last week told me that I had some sort of bio-chemical problem and this was resulting in my poor nails. They took some blood to check what it was.
Now before I was diagnosed as a coeliac, I had lots of problems and pain in my left knee. These had started when I was about 25 and one doctor in those days, suggested I had an operation. When we moved to Suffolk in 1975, a new doctor, recommended some exercises and except for the odd stickiness when I got up from the floor, I never had any more problems.
All of these knee problems got a lot better with a gluten-free diet.
So now it’s the other knee!
Ever since I’ve had the stroke, I’ve worried that something is wrong with the bio-chemistry of my body. I’ll laugh like a drain if I’m low on vitamin B12!
But what do I know about medicine! Not a lot! But I do know my body!
In addition to the knee and nails, I’ve also got a certain amount of the runs and I am sleeping a lot and very well. The latter is probably due to the body needing time to recover.
Too Many Allergies
NICE thinks that too many children are labelled with food allergies, according to reports like this.
I might agree, as I think so many people these days have vanity or lifestyle allergies.
I don’t, as I am a coeliac, that was properly diagnosed at Addenbrookes, when I was over fifty. Since avoiding gluten, I’ve had no diarrhoea, no migraines, no joint pain and no chronic dandruff. I’ve also stopped biting my nails.
Probably about 1-in-100 are coeliacs like me, according to researchers at Nottingham University, Coeliac-UK and the NHS.
But I’ve had all sorts of cranks and quacks tell me that such things as homeopathy can cure my allergy. They are talking crap. But they are the same sort of people who imagine and test for all sorts of things in their children. Often, they are so stupid and paranoid that they don’t believe in vaccination and won’t allow their children to play outside.
But why are we getting so many allergy sufferers. With coeliac disease, a lot of the increase has come because, those born before 1960 are now being properly diagnosed. I was found to have a problem from a simple blood test, which showed I had a vitamin B12 deficiency. Remember that children with coeliac disease couldn’t be diagnosed until the early 1960s.
Also there is more awareness of coeliac disease and how it is passed on through the genes.
I’m Feeling A Bit Better
Could this be the weather, which is less oppressive, the B12 shot, which seems to have improved my nails or just generally getting better.
Feeling Permanently Glutened
I’ve been glutened a few times and now I feel like that most of the time. I’m tired all the time, not very positive at times, my nails are very soft and I’ve had a lot of the runs. In some ways I feel a lot like I used to before I was diagnosed as a coeliac. Especially in hot weather, like we’ve had recently.
Could it be that recovering from a stroke uses up a lot of vitamin B12 and this causes the problems? I don’t know! But there are web sites that hint that B12 can aid stroke recovery. But they are sites that try to sell you all sorts of vitamins and supplements you don’t need or want.
I did find this and you can read it how you like.
In an article published by the Oxford University Press on behalf of the British Geriatrics Society, a 2006 study concluded that increasing levels of B12 following a stroke would be appropriate, though there was no conclusive evidence that an increase in the vitamin following a stroke would aid in recovery, specifically in lowering homocysteine levels and decreasing the risk of dementia.
Anyway, I’m having an injection tomorrow and that might make a difference!
My Poor Feet
My feet are very painful at the moment! Is it the stroke, some of the drugs I have taken like Warfarin, a lack of vitamin B12 or just the shoes, I have been wearing?
At least, I’m seeing the GP tomorrow!
Why Am I Sleeping So Much?
Since I glutened myself after coming out of hospital with the stroke, I’ve been sleeping a lot. My stroke doctor thinks I should have problems sleeping, but I don’t. I’m also suffering badly from hay fever, but that is the weather and the pollen. Is this just a normal healing process or am I still feeling the effects of the gluten? Surely, as my body recovers, it will be using up what B12 I have in my body. My nails are soft, which indicates to me I’m low on B12.
Another Paper
This paper has the title of “Effect of B vitamin supplementation on plasma homocysteine levels in celiac disease”. It sounds boring, but I think it says that if you have low B6 and folate levels, then you might be more likely to get a stroke.
In any case I’m going to get my homocysteine, folate and B6 levels checked. I know the B12 are OK.
The Anonymous Widower 