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Hi,
So 3 weeks ago I got diagnosed with type 1 and needless to say I was a mess. I general just feel low, really worthless and I’ve lost some sort of independence l. Due to driving a lot I’ve been signed off work because my levels aren’t stable. I’ve also stopped eating pretty much everything I enjoy. Is this a normal feeling? How long did it take people to get stable ? Is this what I’ve got to get used to? I seem like I’m constantly snapping at my family and their trying to help but they just don’t understand ..
 

Diakat

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Hi @Claire.mumford
Yes it is normal. You have been pretty ill and it will take a while to recover physically and mentally.
Snapping at family is common if numbers are high, and they may never understand just how many things are in the background of a T1 head - levels, ratios, carbs, exercise, driving, fat content, timing...,
The good news is things do get better.
 

Lucylemonpip

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Messages
49
Type of diabetes
Type 2
Treatment type
Diet only
I’m type 2, but still get cheesed off with it all (no pun intended!). I was diagnosed last Sept/Oct and at that time felt quite cross with myself for not having lost weight, which could have prevented the diabetes. Mostly, I’m okay, but yesterday did feel down in mood and going food shopping didn’t help, as I can no longer visit the cake aisle or the biscuit one, or the confectionary aisle! Although, to be fair, I didn’t visit them that often anyway, as I always tried to be good, but of course, nowadays, they are definitely off limits and yes, it sucks! However, I feel better today and know it’s a mindset. I’ve had a couple of consecutive late nights, so that doesn’t help, so appreciate my current doldrums are a passing phase, as I’m sure yours will be.

Like they say, keep your chin up and things will get better; it takes a bit of getting used to and a bit of planning, but it is doable and at least we know what we have, whereas, other people out there have no idea yet and are yet to be diagnosed. We can and will, make ourselves healthier and will benefit from it. :)
 
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Grant_Vicat

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Type of diabetes
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Intolerance, selfishness, rice pudding
Hi,
So 3 weeks ago I got diagnosed with type 1 and needless to say I was a mess. I general just feel low, really worthless and I’ve lost some sort of independence l. Due to driving a lot I’ve been signed off work because my levels aren’t stable. I’ve also stopped eating pretty much everything I enjoy. Is this a normal feeling? How long did it take people to get stable ? Is this what I’ve got to get used to? I seem like I’m constantly snapping at my family and their trying to help but they just don’t understand ..
Hi @Claire.mumford and welcome to this great forum. Hyperglycaemia or high blood glucose can have so many effects on the body that non diabetics would never imagine.
Very high blood sugar usually causes ketoacidosis. I would always know when I had ketones because my breathing became very laboured, all my muscles felt as though I had run ten miles and performed fifty press-ups, I had an overwhelming feeling of nausea, would drink vast amounts of water without slaking my thirst, would shun social contact, and my family would notice the all too familiar reek of nail polish remover or pear drops. In later years I realised that it would cloud my vision. Until 2010 I was the only member of the family not to need glasses or lenses, but when I was standing on Shoreham Station platform, aged 13, I was unable to read the nameplate on the opposite platform. Chronic diarrhoea and uncontrollable temper are also likely by-products. Even with moderately high levels such as 10.5mmol/L, I would lose my natural patience and become irritated by what are normally trifles. I would also notice that my nose ran when I was high. Is this because the brain is using this system to get rid of excess sugar, as it does colds?
Probably the most immediately damaging effect of hyperglycaemia is lethargy. Often an overwhelming tiredness can put the patient to sleep extraordinarily quickly, and after maybe three hours sleep there is no sign of benefit. Finally headaches and frequent urinating are trademarks.
In spite of all this, once your body becomes adjusted to a better glucose tolerance level, which diet and insulin adjustments will bring about, you should feel much more positive and relatively independent. Dare I say, even a little smug once you realise quite how much people assault their bodies with unsuitable food choices?! Hope things improve rapidly.
 

annliggins

Well-Known Member
Messages
209
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Claire.mumford and welcome to this great forum. Hyperglycaemia or high blood glucose can have so many effects on the body that non diabetics would never imagine.
Very high blood sugar usually causes ketoacidosis. I would always know when I had ketones because my breathing became very laboured, all my muscles felt as though I had run ten miles and performed fifty press-ups, I had an overwhelming feeling of nausea, would drink vast amounts of water without slaking my thirst, would shun social contact, and my family would notice the all too familiar reek of nail polish remover or pear drops. In later years I realised that it would cloud my vision. Until 2010 I was the only member of the family not to need glasses or lenses, but when I was standing on Shoreham Station platform, aged 13, I was unable to read the nameplate on the opposite platform. Chronic diarrhoea and uncontrollable temper are also likely by-products. Even with moderately high levels such as 10.5mmol/L, I would lose my natural patience and become irritated by what are normally trifles. I would also notice that my nose ran when I was high. Is this because the brain is using this system to get rid of excess sugar, as it does colds?
Probably the most immediately damaging effect of hyperglycaemia is lethargy. Often an overwhelming tiredness can put the patient to sleep extraordinarily quickly, and after maybe three hours sleep there is no sign of benefit. Finally headaches and frequent urinating are trademarks.
In spite of all this, once your body becomes adjusted to a better glucose tolerance level, which diet and insulin adjustments will bring about, you should feel much more positive and relatively independent. Dare I say, even a little smug once you realise quite how much people assault their bodies with unsuitable food choices?! Hope things improve rapidly.
As a T1 for 20 yrs your post is not helpful to a newbie imo . So negative
 

annliggins

Well-Known Member
Messages
209
Type of diabetes
Type 1
Treatment type
Insulin
Hi,
So 3 weeks ago I got diagnosed with type 1 and needless to say I was a mess. I general just feel low, really worthless and I’ve lost some sort of independence l. Due to driving a lot I’ve been signed off work because my levels aren’t stable. I’ve also stopped eating pretty much everything I enjoy. Is this a normal feeling? How long did it take people to get stable ? Is this what I’ve got to get used to? I seem like I’m constantly snapping at my family and their trying to help but they just don’t understand ..
Hi hunny ... everything you feel is normal ...worry ..questions ...levels .. etc. Just be calm , nothing bad is going to happen to you . This is going to be work in progress ... the starting point is chill .. breathe .. then your basal ( background ) needs sorting out.. its your building block. Everything will work out ....you will eat ..drink and enjoy life ,truly its do.able honest !
 

Grant_Vicat

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Messages
1,176
Type of diabetes
Don't have diabetes
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I do not have diabetes
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Intolerance, selfishness, rice pudding
As a T1 for 20 yrs your post is not helpful to a newbie imo . So negative
Sorry it came across like that. Many people have told me it helps to know the little discussed (at the doctor's anyway) details of diabetes. Perhaps I should have added that I had Type 1 for 54 years and I am flourishing. Good luck with your future.
 
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Jc3131

Well-Known Member
Messages
325
Type of diabetes
Type 1
Treatment type
Insulin
Hi,
So 3 weeks ago I got diagnosed with type 1 and needless to say I was a mess. I general just feel low, really worthless and I’ve lost some sort of independence l. Due to driving a lot I’ve been signed off work because my levels aren’t stable. I’ve also stopped eating pretty much everything I enjoy. Is this a normal feeling? How long did it take people to get stable ? Is this what I’ve got to get used to? I seem like I’m constantly snapping at my family and their trying to help but they just don’t understand ..
Hello Claire, I'm no diabetes pro but I know exactly what you are going through. I'm nearly 3 years into my diagnosis and before my diagnosis I was in my own words a ' ticking time bomb'. Meaning I was all over the place and no one knew how I felt bar my closest family. I worked nightshift so I put it all down to this, which was a factor but nothing like the way Something like tiredness felt.

I used to say that it felt like my blood was boiling and with that the anger and low spells hit me.

Diagnosis was a shock but I was diagnosed quick as a type 1 because I was quite slim and muscular ( the muscular part is a bit of a lie) and I started insulin straight away.

I totally hammered the internet ( this place and others) for info and bought a book which I read until I couldn't understand it (think like a pancreas) which gave me a lot of info. I still have not finished it as it was a lot to take in during the early days.

I tested myself 10 to 15 times a day and made notes on what I was eating and how it affected me. Pizzas I could handle within reason early days, but now I have one slice as I know it's a food I cannot tolerate. The worst for me was pies and pasties. I could eat one slice of pie and the amount of insulin I needed to take was at least quadrupled and I would still be sky high with my blood. It's all trial and error.

It's not a nice thing to deal with, but you will get by.

Some days you will manage, and some you won't. Today I'm having the worst day in 3 years, mainly down to having the freestyle libre and seeing my blood levels. In the early days it would have sent me off on a long walk etc but now I just have to think whats caused it and in future how to do it better. This is what you need to think about.

Sorry if its long winded and a bit double dutch, I blame high blood sugar levels for that.

John

Also just to add on diagnosis I was off work for 6 weeks and went back on phased return as I felt totally ill until I got my levels a bit more stable and put a bit of the weight on that I had lost.
 
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becca59

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Messages
2,856
Type of diabetes
Type 1
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Insulin
It is early days @Claire.mumford and a shock to the system. As the days go by you will get to grips with carb counting, insulin dosages and will feel fitter and get back to driving. Is there any reason you have stopped eating the things you enjoy? Just to point out a type 1 can still visit the cake aisle and match their insulin to said cake. They may decide not to, as with all things it is a personal choice.
 

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
In my first appointment with the diabetes team they showed me how to inject and told me I'd soon feel better.... except I'd been feeling fine running with BG levels of 30+ (the diagnosis was a shock)

I felt AWFUL when I started on insulin and a complete failure. Bloods all over the place, exhausted, couldn't sleep. Then I had a consultants appointment and he basically said your body has been addicted to sugar and this is now a detox. Not our fault obviously - we did nothing wrong to get T1 - but it's a huge shock to our bodies to work with normal BG levels again.

Only forums like this help you realise that we've all struggled at times and it does get better.

Hang on in there and be kind to yourself. It's a big adjustment and most people around you are completely clueless about what you're going through
 
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KK123

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Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
I’m type 2, but still get cheesed off with it all (no pun intended!). I was diagnosed last Sept/Oct and at that time felt quite cross with myself for not having lost weight, which could have prevented the diabetes. Mostly, I’m okay, but yesterday did feel down in mood and going food shopping didn’t help, as I can no longer visit the cake aisle or the biscuit one, or the confectionary aisle! Although, to be fair, I didn’t visit them that often anyway, as I always tried to be good, but of course, nowadays, they are definitely off limits and yes, it sucks! However, I feel better today and know it’s a mindset. I’ve had a couple of consecutive late nights, so that doesn’t help, so appreciate my current doldrums are a passing phase, as I’m sure yours will be.

Like they say, keep your chin up and things will get better; it takes a bit of getting used to and a bit of planning, but it is doable and at least we know what we have, whereas, other people out there have no idea yet and are yet to be diagnosed. We can and will, make ourselves healthier and will benefit from it. :)

I know you mean well but you are describing a completely different condition. Yes both have their respective challenges but I would hardly say the poster's 'doldrums' are a passing phase, or a 'bit of planning' will solve all. To me, that would be like a person without diabetes telling me 'they know what it's like'.
 
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tomrose

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Messages
48
Type of diabetes
Type 1
Treatment type
Insulin
Hi Claire, I was diagnosed July 2018. It seems everyone is different with how long it takes them to return to the new ‘normal’. After dx I went low carb and stopped eating most things I enjoyed, partly to try and prolong the honeymoon and partly because I was worried about injecting a hypos. I would say it has taken until the start of this year (2020) for my diet to return to near normal. I think I ‘accepted’ the diabetes pretty quickly, but it definitely dominated my thoughts for the first 6 months. What I would say is things WILL get better. Hang in there and you’ll be ok
 
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Shannon27

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Messages
290
Type of diabetes
Type 1
Treatment type
Insulin
Sorry it came across like that. Many people have told me it helps to know the little discussed (at the doctor's anyway) details of diabetes. Perhaps I should have added that I had Type 1 for 54 years and I am flourishing. Good luck with your future.
You HAD T1 for 54 years? And your description thing says you're not diabetic? Did you get a transplant?

@Claire.mumford sorry i'm a bit late to this post, i hope you're feeling a bit better about it all now? I've been diabetic for 20ish years, since being 4 years old. Everyone still gets down about it time and time again and it must feel like an overwhelming upheaval to your life. It will become automatic soon enough and then you can carry on with your life as it was. Just takes a little extra work :)

Just post on here if you have any questions or need some support x
 
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Shannon27

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Messages
290
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Shannon27 yes @Grant_Vicat had a transplant. I'm sure he will be happy to explain in due course.
It's like the dream of almost every diabetic out there (well, at least mine!) I'd love to hear more about it :) And a lot of symptoms of what he described above are extreme cases. NOT the norm. I have experienced a lot of them and i understand that while it might seems scary for someone new to diabetes, it's something you do need to be aware of :)
 
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Grant_Vicat

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It's like the dream of almost every diabetic out there (well, at least mine!) I'd love to hear more about it :) And a lot of symptoms of what he described above are extreme cases. NOT the norm. I have experienced a lot of them and i understand that while it might seems scary for someone new to diabetes, it's something you do need to be aware of :)
Hi @Shannon27 Thank you for in effect justifying my "unhelpful" comments! I feel that having had, most of my life, the ability to analyse cause and effect, it would be almost criminal not to pass on observations.
I had a kidney/pancreas transplant back in August 2013. I must stress that this came about after a very bad 19 years control and denial (1959 - 1978). I was lucky to be referred to King's College Hospital in 1978 and they read the riot act. I had proteinurea as early as 1973 and King's gave me the latest treatment at the time. By 2000 my kidney function was being monitored by Addenbrooke's Hospital (Cambridge University) who gave me about 5 years until dialysis would be necessary. By 2012 they put me on the transplant list and almost casually asked me if I would consider a pancreas transplant at the same time. It was like being in the back row of the class and you suddenly become aware the teacher is mentioning your name. "Are you kidding?"
I thought these two consultants were gods! They had to persuade me to discuss it with my family. I had no doubt that it would work. On the seventh attempt it did! I missed starting peritoneal dialysis by 8 days. They did a whole battery of tests which were repeated in 2013, to make sure that I was fit enough at the age of nearly 55 to go ahead with such a serious operation. They psychologically prepared me very well indeed, even saying that I would think they were utter b......s when the attempt(s) failed. This was vital. since I did at one stage actually wonder whether it would come about, since the pancreas is a very delicate organ and kidneys are as "tough as tennis balls". To the best of my knowledge only one patient has been given a pancreas transplant for other reasons, namely serious needle phobia. Although I still suffer from this, clearly not to a high enough degree! In other words, transplant is normally offered when serious complications are looming and the patient can withstand it. At the time there were over 100 in this country, but I don't know what the current total is.
The obvious benefits are the freedom from testing and dose adjustment. Up till the operation I used to test my blood before I even got out of bed, just to give me an indicator of the next move. I was on an old fashioned treatment (initiated in August 1966) of a minimum of two injections a day, mixed fast and slow acting, before breakfast and supper. I was put on the Lawrence Line Weight Diet, which was carb counting. Although I don't have to, I stick pretty close to this even now. It allowed for 250 g of carbs a day! I still weigh the same as in 1981. To be able to get behind the wheel of a car and know that I only need to concentrate on the road is incredibly liberating.
There are downsides. As an organist, pianist and artist, the immuno-suppressants have caused tremors in my hands, which means that, especially soon after taking medication, playing black notes with my little fingers is impossible as is gripping paper, or controlling pen, pencil etc Sewing is out of the question! My fine motor skills are at their best in the middle of the day or night. I had a set-back in August 2018, exactly 5 years after the op, when Addenbrooke's informed me that my Amylase and Lipase levels were worryingly high, indicating probable pancreas rejection. I had six months of being zombified, but thankfully things have improved for the last 13 months. I can fully understand your interest, but would certainly not wish your life to be at such a low ebb as to make it advisory. I think knowing the possibility is there could be comforting perhaps? The best of luck in your life!
 

Shannon27

Well-Known Member
Messages
290
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Shannon27 Thank you for in effect justifying my "unhelpful" comments! I feel that having had, most of my life, the ability to analyse cause and effect, it would be almost criminal not to pass on observations.
I had a kidney/pancreas transplant back in August 2013. I must stress that this came about after a very bad 19 years control and denial (1959 - 1978). I was lucky to be referred to King's College Hospital in 1978 and they read the riot act. I had proteinurea as early as 1973 and King's gave me the latest treatment at the time. By 2000 my kidney function was being monitored by Addenbrooke's Hospital (Cambridge University) who gave me about 5 years until dialysis would be necessary. By 2012 they put me on the transplant list and almost casually asked me if I would consider a pancreas transplant at the same time. It was like being in the back row of the class and you suddenly become aware the teacher is mentioning your name. "Are you kidding?"
I thought these two consultants were gods! They had to persuade me to discuss it with my family. I had no doubt that it would work. On the seventh attempt it did! I missed starting peritoneal dialysis by 8 days. They did a whole battery of tests which were repeated in 2013, to make sure that I was fit enough at the age of nearly 55 to go ahead with such a serious operation. They psychologically prepared me very well indeed, even saying that I would think they were utter b......s when the attempt(s) failed. This was vital. since I did at one stage actually wonder whether it would come about, since the pancreas is a very delicate organ and kidneys are as "tough as tennis balls". To the best of my knowledge only one patient has been given a pancreas transplant for other reasons, namely serious needle phobia. Although I still suffer from this, clearly not to a high enough degree! In other words, transplant is normally offered when serious complications are looming and the patient can withstand it. At the time there were over 100 in this country, but I don't know what the current total is.
The obvious benefits are the freedom from testing and dose adjustment. Up till the operation I used to test my blood before I even got out of bed, just to give me an indicator of the next move. I was on an old fashioned treatment (initiated in August 1966) of a minimum of two injections a day, mixed fast and slow acting, before breakfast and supper. I was put on the Lawrence Line Weight Diet, which was carb counting. Although I don't have to, I stick pretty close to this even now. It allowed for 250 g of carbs a day! I still weigh the same as in 1981. To be able to get behind the wheel of a car and know that I only need to concentrate on the road is incredibly liberating.
There are downsides. As an organist, pianist and artist, the immuno-suppressants have caused tremors in my hands, which means that, especially soon after taking medication, playing black notes with my little fingers is impossible as is gripping paper, or controlling pen, pencil etc Sewing is out of the question! My fine motor skills are at their best in the middle of the day or night. I had a set-back in August 2018, exactly 5 years after the op, when Addenbrooke's informed me that my Amylase and Lipase levels were worryingly high, indicating probable pancreas rejection. I had six months of being zombified, but thankfully things have improved for the last 13 months. I can fully understand your interest, but would certainly not wish your life to be at such a low ebb as to make it advisory. I think knowing the possibility is there could be comforting perhaps? The best of luck in your life!
Thank you for going into this!
I've recently come out of several years of what you call "bad control and denial", and i'm glad to see the other side! I knew and told people i was diabetic but i just didn't care. Now i'm finally I'm starting to lose weight and i feel like i have more energy, me and my partner are hoping for our first child around 2022 so he's helping me work steadily towards that.
I'm definitely not the worst case out there, certainly not the best. No way would i be eligible, as it isn't affecting my life negatively apart from being a pincushion.
Interesting that you are also a pianist and struggle with motor control, for different reasons probably as i'm not on any other medication. When i play i sometimes get spasms in my arms, which causes my hand and fingers to seize up. It's the same at work when i use a mouse or type, although it's not constant. Just a violent twitch, sometimes 2 or 3 together. It's really affected my confidence with playing and i don't practice much any more because of it. I'm actually waiting for an appointment with a neurologist so they can maybe put a name to it and potentially treat it. I suspect dystonia, in part because the triggers i've found online are weirdly similar to what triggers it for me.
But i hope you keep on playing :)
 
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Grant_Vicat

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I do not have diabetes
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So the body no longer attacks the beta cells in your new pancreas @Grant_Vicat ? Did they have to run any tests before the transplant to check this?
Hi @Circuspony I think there is no doubt that the little so-and-sos would if I weren't taking 9 immuno-suppressants a day. I don't think there is any way they could do this without plumbing in a replacement pancreas. When it is first installed they are very obviously looking for insulin production. I had a jejunostomy tube straight into the digestive tract, and no end of lines to drain unwanted substances and to have direct access for blood samples, transfusions (x 1) and saline drips etc. They put me on an incredibly expensive anti-viral drug for six months, and the highest allowable dose of immuno-suppressants. At first I was seen twice weekly to monitor blood chemistry and therefore to observe how the pancreas has kicked in. They gradually lowered my dose of Tacrolimus, because, ironically, that's the one that can damage my new kidney! I had the amusing incident where I was with my brother in a pub in Norfolk (amazingly I have never been taken off red wine) and my mobile rang (I had to have it available at all times for hospital contact).
"Hello Grant, this is Addenbrooke's. Could you get over to the clinic now?"
"Ah! That could be interesting, I am sitting in a pub in North Norfolk, half way through fish and chips!"
"At least enjoy your lunch, but how soon can you make it over?"
It has never felt like I'm being talked down to, rather as though all my family just happen to be top grade immunologists!
I trust you are keeping control of the old devil? I wish you well
 

Grant_Vicat

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Messages
1,176
Type of diabetes
Don't have diabetes
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I do not have diabetes
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Intolerance, selfishness, rice pudding
Thank you for going into this!
I've recently come out of several years of what you call "bad control and denial", and i'm glad to see the other side! I knew and told people i was diabetic but i just didn't care. Now i'm finally I'm starting to lose weight and i feel like i have more energy, me and my partner are hoping for our first child around 2022 so he's helping me work steadily towards that.
I'm definitely not the worst case out there, certainly not the best. No way would i be eligible, as it isn't affecting my life negatively apart from being a pincushion.
Interesting that you are also a pianist and struggle with motor control, for different reasons probably as i'm not on any other medication. When i play i sometimes get spasms in my arms, which causes my hand and fingers to seize up. It's the same at work when i use a mouse or type, although it's not constant. Just a violent twitch, sometimes 2 or 3 together. It's really affected my confidence with playing and i don't practice much any more because of it. I'm actually waiting for an appointment with a neurologist so they can maybe put a name to it and potentially treat it. I suspect dystonia, in part because the triggers i've found online are weirdly similar to what triggers it for me.
But i hope you keep on playing :)
Hi @Shannon27 I'm glad your health is improving! Your partner is clearly a valuable asset - believe me, not all seem bothered about a life-threatening condition. It will be interesting to see if a regular balanced HbA1c improves your motor control - it might.
I played for over 2 hours yesterday and for School Assembly this morning! Keep well and good luck with starting a family - best thing I ever did.