My worrys...why a 21 year old should not have to think about complications

Status
Not open for further replies.
SilentAssassin1642

SilentAssassin1642

Well-Known Member
Relationship to Diabetes
Type 1
As a twenty one year old girl, I often wonder what it is I should be worrying about. But instead I find myself worrying more and more about the damage I have inflicted on my body. You all know of my rebellion, and now I'm suffering for it.

I have nueropathy in my feet, which I think is getting worse. Sometimes when I stand up it feels like my left foot is cramping up. I get pins and needles and whenever my levels are high it feels as if some nasty piece of work is stabbing my feet over and over with a very sharp pin. There are days when I wonder if its spreading, sometimes when my levels are high it feels as though the pain has moved to my hands and sometimes it feels like I'm getting it in my cheeks too.

I take gabapentin, but I'm not sure its working. I'm wondering whether to up my dose but that would mean seeing my new doctor again and I'm really not a fan of hers. I suppose I could ask the consultant when I see him next month, or even the podiatrist.

I'm not going to lie to you guys, it frightens me silly. I went on the pump to stop the spread of it, to help me fight against the damage that has already been done, and I know I'm not far into it but I'm wondering if it was the right move to make? I know I was an idiot in what I did to myself and in all honesty I'm surprised I'm still here to tell to the tale. Hindsight is a wonderful thing and I would give anything to go back and change the way I acted :(

I spend too much time worrying about this. I thought 21 year olds were supposed to worry about what alcoholic drink they would be having or how good they look on a night out? I have to admit, sometimes this diabetes makes me feel old before my time. And I don't like it.
 
Hi Sam, I can imagine it must be a worry, but try not to jump to the worse conclusions. I think it might be worth reporting to your doctor to see if she has an explanation and something that might help. It might be a consequence of the rather turbulent times you've been having lately - what with the move and job and everything, and in particular your extreme ups and downs in BG levels. If so, then hopefully things will settle down as your control improves like never before when you are a fully paid up pump goddess of the first order (takes a few months, I hear).

Try not to stress. Have you been doing more exercise too, for example training for your sponsored walk?
 
Hi Sam,

I agree with Northy, stress is never good for your blood sugar levels (my laid back type 1 workmate says that stress would send her bs through the roof so she avoids it, good trick if you can do it.) I hope the pump works out for you, it seems like such a great system, too bad nobody makes them for type 2s...metformin's cheaper i assume. Maybe you need to give it some more time until you've gotten used to it. Gabapentin isn't the only drug availible for neuropathy, i guess you could try amitryptiline (although the side effects are pretty dreary) or carbamazepine. Maybe your local pain clinic has some suggestions.
I'm sure you haven't brought this on yourself, i'm sure lots of young people go through rebellions against thier diabetes, who wouldn't? It's just one of those things, very unfair. Keep fighting it though, you must be a huge inspiration to other young type 1s, and some of us (slightly older) type 2s. Go for it Girlie!!

Rachel
 
I'll second Rachel's suggestion to attend a pain clinic. That will need referral from your GP, but if you're not getting on too well, they may be even more happy to pass you to someone else. Pain clinics don't just deal in medication (tablets, skin patches, injections, doses, frequencies etc), but also psychological (eg counselling) and physiological (eg TENS machine) treatments of pain. Also, ask for any help available regarding employment etc - the situation tough for everyone, but even tougher in a competitive field like archaeology, even without diabetes.
Not easy to do, I know, but there's no point regretting things that have past or over which you have no control, but important to concentrate on changing improving what you can. Let us know how you get on with anything, as you choose.
 
hi sam , just a thought but you say its getting worse... could it be that its the new control with the pump that has bought it on , the only reason i say this is dr kerr warned me that my eyes and feet might get worse if my hba1 dropped too quickly , and i went from 10.8 to 8.0 in 2 months and my eyes have really got bad and my feet , i spoke to dsn and shes booked me in for early eye tests and foot tests because they have got suddenly much worse and they think its the new control that has caused it , i cant win it seems , talk to nursey she'll probably do the same for you and get it all checked for you ((hugs)) and dont beat yourself up over past rebellion , ive been there got the t shirt too but i cant cahnge that now , just have to concentrate on the future 🙂
 
bex123 said:
hi sam , just a thought but you say its getting worse... could it be that its the new control with the pump that has bought it on , the only reason i say this is dr kerr warned me that my eyes and feet might get worse if my hba1 dropped too quickly , and i went from 10.8 to 8.0 in 2 months and my eyes have really got bad and my feet , i spoke to dsn and shes booked me in for early eye tests and foot tests because they have got suddenly much worse and they think its the new control that has caused it , i cant win it seems , talk to nursey she'll probably do the same for you and get it all checked for you ((hugs)) and dont beat yourself up over past rebellion , ive been there got the t shirt too but i cant cahnge that now , just have to concentrate on the future 🙂
Click to expand...

hi bex - thanks for that. Dyu know I've never actually seen dr kerr......and the only thing that was mentioned to me by mel and julie was that my eyes might get worse if the control drops too quickly. I haven't had an hba1c done yet as I've lost the forms. Oops. I should probably ask for a new one hehe. I'll drop nursey an email later and ask for one i think.

I'm at southampton clinic next month, but I'm loathe to ask there as they know begger all about pumping and whats the betting i end up leaving there in tears? Its definitely worth speaking with someone though I think.

Bex can I just ask what you think of those group sessions that bdec do at 1 month etc? I actually hated it when I went, I didn't find it helpful at all! And I'm loathe to spend money on train fare for the next one next month when I found it to be as much use as a chocolate teapot!!
 
Last edited by a moderator:
Have they not given you an appointment to see him yet? that's a bit rubbish.
I lost my forms last time too (well, all my stuff has been put in storage) so i just went in and got one from reception. I'm sure they'll send you one.
 
katie said:
Have they not given you an appointment to see him yet? that's a bit rubbish.
I lost my forms last time too (well, all my stuff has been put in storage) so i just went in and got one from reception. I'm sure they'll send you one.
Click to expand...

nope...first appointment with him is next june...
 
SilentAssassin1642 said:
I spend too much time worrying about this. I thought 21 year olds were supposed to worry about what alcoholic drink they would be having or how good they look on a night out? I have to admit, sometimes this diabetes makes me feel old before my time. And I don't like it.
Click to expand...

Hi Sam,

(Fortunately) I can't relate to the neuropathy, but I'm 20 and feel a bit hard done by sometimes. I definitely feel older than I am. My entire life my health has been a constant worry, which I think is ordinarily something that doesn't affect people until nearing retirement. I went through a period of not caring about my BG - I took my insulin, but never checked my BG, ate whatever the hell I wanted and I think spent most of the time at 18-20. I've yet to find out the damage I did (at the moment there are no problems with my eyes, feet, etc).

I've never eaten an entire tub of ice cream or been really properly drunk, because the consequences of high/low BG terrify me. It feels so unfair sometimes.

I deal with this in two ways. 1) Because of my diabetes, I look after my health and eat better than most people, exercise more, drink less alcohol, and have never smoked. I feel that this means it is a blessing in disguise, in some ways. And 2) It could be a hell of a lot worse. When I was at school, one of my friends had an asthma attack and died, and I'm very grateful to have diabetes rather than asthma, MS, spina bifida, etc. At least I can take control of my diabetes - there are so many other conditions for which very little can be done.

I just wanted to let you know that you're not alone in feeling that you shouldn't be worrying about this at your age. But I guess it's a case of counting your blessings. And be thankful and proud of yourself that you're taking control now, and therefore limiting the damage.
 
SilentAssassin1642 said:
hi bex - thanks for that. Dyu know I've never actually seen dr kerr......and the only thing that was mentioned to me by mel and julie was that my eyes might get worse if the control drops too quickly. I haven't had an hba1c done yet as I've lost the forms. Oops. I should probably ask for a new one hehe. I'll drop nursey an email later and ask for one i think.

I'm at southampton clinic next month, but I'm loathe to ask there as they know begger all about pumping and whats the betting i end up leaving there in tears? Its definitely worth speaking with someone though I think.

Bex can I just ask what you think of those group sessions that bdec do at 1 month etc? I actually hated it when I went, I didn't find it helpful at all! And I'm loathe to spend money on train fare for the next one next month when I found it to be as much use as a chocolate teapot!!
Click to expand...

hiya again sam yeah i was pretty much thinking the same in terms of info and bringing anything new to the table , on the other hand thats where i had the hba1 done in one of the group sessions so worth going for that if nothing else

also it would be a good opportunity to get them to oragnise you some feet and eye checks , i got some extra test strips off them last time too lol

but you are right it is a full 2 hours of bordom as far as i can see lol

ooh also i saw dr kerr when i trasfered over from poole as an initial meeting and health check , that was when he offered me a pump before i had even started begging him lol , i dont have arother appointment with him till next june
 
Last edited:
bigpurpleduck said:
Hi Sam,

(Fortunately) I can't relate to the neuropathy, but I'm 20 and feel a bit hard done by sometimes. I definitely feel older than I am. My entire life my health has been a constant worry, which I think is ordinarily something that doesn't affect people until nearing retirement. I went through a period of not caring about my BG - I took my insulin, but never checked my BG, ate whatever the hell I wanted and I think spent most of the time at 18-20. I've yet to find out the damage I did (at the moment there are no problems with my eyes, feet, etc).

I've never eaten an entire tub of ice cream or been really properly drunk, because the consequences of high/low BG terrify me. It feels so unfair sometimes.

I deal with this in two ways. 1) Because of my diabetes, I look after my health and eat better than most people, exercise more, drink less alcohol, and have never smoked. I feel that this means it is a blessing in disguise, in some ways. And 2) It could be a hell of a lot worse. When I was at school, one of my friends had an asthma attack and died, and I'm very grateful to have diabetes rather than asthma, MS, spina bifida, etc. At least I can take control of my diabetes - there are so many other conditions for which very little can be done.

I just wanted to let you know that you're not alone in feeling that you shouldn't be worrying about this at your age. But I guess it's a case of counting your blessings. And be thankful and proud of yourself that you're taking control now, and therefore limiting the damage.
Click to expand...

I really think you and I must be twins. I went through the EXACT same things with the rebellion 😱 unfortunately my kick in the teeth getting myself sorted and getting my Hba1c down so quickly resulted in the problems with my feet. However, at uni i smoked and drank like a homeless person which didn't help. Now I feel ashamed of how I acted. Bleh. Seriously though, we must be D-Twins.
 
Bex, they did your HbA1C? I need to get one done, but think Im gonna get it done at southampton and let the BDec team know. I actually and honestly don't think I can make next months at B-Dec - I've got billions of appointments next month and actually think some of them clash with B-Dec. Oops.

I'll mention about eye and foot checks however. Must email Julie about it (and also grovel at the fact I won't be going to the next appointment...they're gonna haaate me D: I'm sure I could travel up a different time to see them if they wanted...)
 
SilentAssassin1642 said:
I really think you and I must be twins. I went through the EXACT same things with the rebellion 😱 unfortunately my kick in the teeth getting myself sorted and getting my Hba1c down so quickly resulted in the problems with my feet. However, at uni i smoked and drank like a homeless person which didn't help. Now I feel ashamed of how I acted. Bleh. Seriously though, we must be D-Twins.
Click to expand...

How come bringing your A1c down quickly brings on neuropathy?

I think my A1c reduction has been quite a bit slower, but working a lot harder now than I ever have before and am a bit scared! How quickly are you talking? And if you don't mind me asking, how high did your A1c get? I think my highest was 10.4. (Feel free to PM if you don't want to share publicly - or tell me to mind my own business!)

How de-motivating must that be, dropping your A1c to be rewarded with neuropathy?! Big hugs to you!
 
bigpurpleduck said:
How come bringing your A1c down quickly brings on neuropathy?

I think my A1c reduction has been quite a bit slower, but working a lot harder now than I ever have before and am a bit scared! How quickly are you talking? And if you don't mind me asking, how high did your A1c get? I think my highest was 10.4. (Feel free to PM if you don't want to share publicly - or tell me to mind my own business!)

How de-motivating must that be, dropping your A1c to be rewarded with neuropathy?! Big hugs to you!
Click to expand...

too fast a drop can accelerate any problems that may be developing. Doing it slower can quite dramatically reduce the chances of anything developing especially with the eyes.

In all honesty, I don't know how high my A1C got. I got one done and it was 10, and that was just as the rebellion was getting going and from then on I refused to get it done. bear in mind i had just started uni and was out drinking every night and had blood sugars averaging 25-30 most days. I'm surprised I didn't go into DKA (but i was still taking insulin, just very sporadically). I got it down to 8.4 and that's when my doctor told me if i didn't sort myself out i'd be dead by the time i'm 30. I think it must have been a month and a half or so and i'd got the HbA1C down to 7.0 and then when i moved to my new hospital a month or so after that it was down to 6.5. So very, very quickly.

It did kind of suck, but I've been told if I keep my levels steady then the symptoms should die down. they've only really started up again since pumping due to the initial swinging levels i think.

Feel free to PM me if you like, I was totally in your shoes and so I think we have a proper good understanding of what its like to go through this and come out the other side 🙂
 
bigpurpleduck said:
How come bringing your A1c down quickly brings on neuropathy?

I think my A1c reduction has been quite a bit slower, but working a lot harder now than I ever have before and am a bit scared! How quickly are you talking? And if you don't mind me asking, how high did your A1c get? I think my highest was 10.4. (Feel free to PM if you don't want to share publicly - or tell me to mind my own business!)

How de-motivating must that be, dropping your A1c to be rewarded with neuropathy?! Big hugs to you!
Click to expand...

When it's a result of a quick drop in HbA1c it's usually transient, whilst your body becomes used to the new, lower levels - happened to me when my levels dropped to 6.8% from 11.8% in less than two months. Dropping HbA1c quickly can also cause problems with retinopathy, again usually transient.
 
Northerner said:
When it's a result of a quick drop in HbA1c it's usually transient, whilst your body becomes used to the new, lower levels - happened to me when my levels dropped to 6.8% from 11.8% in less than two months. Dropping HbA1c quickly can also cause problems with retinopathy, again usually transient.
Click to expand...

what he said 😛

I've been told mine is transient and will die down...eventually...that was last november lol
 
Suposedly they cant even tell you what your hba1c is if it above 13 or 14% cant remember which!! I find that quite scary to be honest, my highest ever was around 8.7% and that was probably due to highs being balanced by lows when i was ill for 3 months with the flu!! flu for 3 months must be a diabetic thing?😱 lol
 
My daughter K's hba1c was 16.7 when she was dx, and she already had/has eye problems (cataracts) caused by the diabetes. She didnt inflict these problems on herself and should an 11 year old have to worry about her health?

My Dad had Type 2 due to an undiagnosed heart problem he was born with. He didnt neglect his health but he still lost his eye sight and eventually his life.

Please treat Diabetes seriously, whatever your age
 
carolynsurry said:
My daughter K's hba1c was 16.7 when she was dx, and she already had/has eye problems (cataracts) caused by the diabetes. She didnt inflict these problems on herself and should an 11 year old have to worry about her health?

My Dad had Type 2 due to an undiagnosed heart problem he was born with. He didnt neglect his health but he still lost his eye sight and eventually his life.

Please treat Diabetes seriously, whatever your age
Click to expand...


Thats really sad..........I didnt know cataracts could develop from diabetes......
 
novorapidboi26 said:
Thats really sad..........I didnt know cataracts could develop from diabetes......
Click to expand...

Nor did her D team 😡

Its something to do with the little blood vessels - i dont really understand - but it has got a little better with lower BS's and may not require surgery - we have to wait and see (no pun intended)
 
Status
Not open for further replies.
Back
Top