Newly diagnosed type 1 unable to work what do i do

[kerryjb]

Diagnosed with type 1 in April 2015, condition not fully stable as I am still producing some insulin myself. Suffer with hypo's that leave me feeling unwell and most days have fatigue to the point I have to return to bed to rest for a couple of hours. I have been job seeking due to unemployment prior to diagnosis but missed some interviews due to my illness and simply do not feel well enough to be able to start working again given I can not do a full week without having to go back to bed each day. What do I do ? Im getting to the point that if anyone else says or tells me to live as normal life as possible I'll snap :-( and being completely honest have thought about just injecting too much insulin so at least I wont have to get up and feel like this for another day.

 

[tim2000s]

That sounds really difficult. Have you spoken to your diabetic team about all of this? They should have experience of dealing with these kind of issues and the associated way it messes with your head.

It's difficult for us to assist without knowing a bit more about your situation, but it sounds as though you are using too much insulin for your needs.

How much blood testing do you do and have you been able to spot any patterns? You could also ask your healthcare team for a loan of a CGM to see what is going on.

 

[mfactor]

Just been in your situation the past year.............

First ..you are not well go see your doctor and get signed off , then Apply for ESA ( unless you are on universal credit where it is slightly different)

You will then be put into the assessment phase which is supposed to be 12 weeks but mine took 4 months, this will give you time to hopefully sort your health problems out with no one hassling you...............

 

[kerryjb]

That sounds really difficult. Have you spoken to your diabetic team about all of this? They should have experience of dealing with these kind of issues and the associated way it messes with your head.

It's difficult for us to assist without knowing a bit more about your situation, but it sounds as though you are using too much insulin for your needs.

How much blood testing do you do and have you been able to spot any patterns? You could also ask your healthcare team for a loan of a CGM to see what is going on.

Spoke with my diabetic nurse and consultant they didn't offer much support other than to test my thyroid which was ok, I've booked to see my g.p. now to see if she can help. My blood glucose readings are good within range which is why I don't understand why I feel so ill with it all.

thanks for your advice greatly appreciated

 

[kerryjb]

Just been in your situation the past year.............

First ..you are not well go see your doctor and get signed off , then Apply for ESA ( unless you are on universal credit where it is slightly different)

You will then be put into the assessment phase which is supposed to be 12 weeks but mine took 4 months, this will give you time to hopefully sort your health problems out with no one hassling you...............

Many thanks for your help greatly appreciated

 

[Karen58]

Hi , I've got the same problem myself , I'm type 1.5 blood sugar is in range , but having severe fatigue and cheast pains , felt better on insulin but it was making me hypo

 

[RuffsTheShake]

For the first month or so after I was diagnosed this year I also felt fatigued, had difficulty concentrating which resulted in me deferring my university unfortunately. I was fortunate enough to have a job with relatively short shifts that I could struggle through. Are you in a situation where you could aim for less than a full work week at the moment? I also have been tempted with just injecting too much but please don't. Does the UK have diabetic counsellors or even just spending time talking to people on here who can understand the frustration. Have you examined the causes of your hypos? Or is it quite unpredictable? I kept waking up low and realised it was due to me having dinner between 6-9pm but staying up until 1-2am and therefore by the time I would wake it was more than 12hours since I last had something. So lately I either have dinner later, sleep earlier or drink some milk prior to sleeping.

 

[Chook]

Coming at this from a different direction, I have, in the past, suffered with depression and it manifested itself both mentally and physically. I became both totally and completely exhausted with aches and pains all over. It got so bad I just didn't want to go on. Luckily at the time my GP's practise had a really good locum who picked up on it during a consultation for something completely different. I was prescribed some anti depressants and was signed off work for four months which gave me breathing space to recover. At the time I was insulin dependant T2 which may have contributed to it - it certainly didn't help - but I think it was a combination of things that brought it on.

Please do go to see your doctor and tell her/him everything as, with depression, they do need to be aware of the bigger picture rather than focusing on your diabetes.

 

[Daibell]

Hi. It's obvious that you have some depression currently/ Have you though about some counselling from a suitable organisation such as Mind that the GP can refer you to? You shouldn't be having hypos other than rarely unless you have one of the rarer forms of diabetes. Are you on Basal/Bolus and carb-counting? Have you checked your Basal to get the balance right? You say your figures are good but you also hypo; something not right there. Do discuss all this with the GP. As your figures are 'within range' any illness is unlikely to be related to your diabetes.

 

[kerryjb]

Hi , I've got the same problem myself , I'm type 1.5 blood sugar is in range , but having severe fatigue and cheast pains , felt better on insulin but it was making me hypo

insulin made me have hypo's too although they are improving now I have reduced long term lantus solostar by 2 units as insutrcuted by my consultant. That said I do still have then 2-3 per week and if I do any form of activity...walking, food shopping, cleaning it still triggers a hypo. really difficult to get it controlled.

 

[kerryjb]

Hi. It's obvious that you have some depression currently/ Have you though about some counselling from a suitable organisation such as Mind that the GP can refer you to? You shouldn't be having hypos other than rarely unless you have one of the rarer forms of diabetes. Are you on Basal/Bolus and carb-counting? Have you checked your Basal to get the balance right? You say your figures are good but you also hypo; something not right there. Do discuss all this with the GP. As I thought is was normal to feel like this due to the enourmaty of diabetes when first diagnosed. My carb counting I'm told is great considering the time Ive had this and all my blood results are good but 2-3 times per week I have hypos sometimes for no reason. My nurse said I was hyper sensitive to insulin. Although I do reduce my insulin if I go for walks, food shopping or even cleaning it does still trigger hypo's. Im finding I can not live as normal life as possible with it at the moment.

 

[kerryjb]

Coming at this from a different direction, I have, in the past, suffered with depression and it manifested itself both mentally and physically. I became both totally and completely exhausted with aches and pains all over. It got so bad I just didn't want to go on. Luckily at the time my GP's practise had a really good locum who picked up on it during a consultation for something completely different. I was prescribed some anti depressants and was signed off work for four months which gave me breathing space to recover. At the time I was insulin dependant T2 which may have contributed to it - it certainly didn't help - but I think it was a combination of things that brought it on.

Please do go to see your doctor and tell her/him everything as, with depression, they do need to be aware of the bigger picture rather than focusing on your diabetes.

thank you I will do

 

[kerryjb]

For the first month or so after I was diagnosed this year I also felt fatigued, had difficulty concentrating which resulted in me deferring my university unfortunately. I was fortunate enough to have a job with relatively short shifts that I could struggle through. Are you in a situation where you could aim for less than a full work week at the moment? I also have been tempted with just injecting too much but please don't. Does the UK have diabetic counsellors or even just spending time talking to people on here who can understand the frustration. Have you examined the causes of your hypos? Or is it quite unpredictable? I kept waking up low and realised it was due to me having dinner between 6-9pm but staying up until 1-2am and therefore by the time I would wake it was more than 12hours since I last had something. So lately I either have dinner later, sleep earlier or drink some milk prior to sleeping.

We don't have diabetic counsellors freely available we just have a diabetic nurse who isn't trained as a counsellor and mainly focus's on my blood readings and carb counting, everytime I mention how im feeling its kind of brushed off as being newly diagnosed as I will feel better soon ! My hypo's have no set pattern at all to be honest they happen when they want for no real reason, I can test at 9am all good then re-test half hour later when going into hypo. Carb calcs are fine also. The only explanation given to me is that I am super sensitive to insulin.

 

[Karen58]

insulin made me have hypo's too although they are improving now I have reduced long term lantus solostar by 2 units as insutrcuted by my consultant. That said I do still have then 2-3 per week and if I do any form of activity...walking, food shopping, cleaning it still triggers a hypo. really difficult to get it controlled.

 

[Karen58]

Trying again with insulin 2 units less than I was taking prev , do you have lada too ??

 

[kerryjb]

Trying again with insulin 2 units less than I was taking prev , do you have lada too ??

I have Humalog fast acting which I carb count with meals and then the lantus solostar each evening

 

[Scouser58]

Diagnosed with type 1 in April 2015, condition not fully stable as I am still producing some insulin myself. Suffer with hypo's that leave me feeling unwell and most days have fatigue to the point I have to return to bed to rest for a couple of hours. I have been job seeking due to unemployment prior to diagnosis but missed some interviews due to my illness and simply do not feel well enough to be able to start working again given I can not do a full week without having to go back to bed each day. What do I do ? Im getting to the point that if anyone else says or tells me to live as normal life as possible I'll snap :-( and being completely honest have thought about just injecting too much insulin so at least I wont have to get up and feel like this for another day.

Hello kerryjb,,,,,while you are having problems getting settled into your routine,,,it would be better to go off the job search and jsa,,,,ask your gp for a sick note to allow you more time to get the T1 under control and for you to get back on your feet,,,,,they will then transfer you into another group of benefit payments,,,,don't rush yourself,,your body is trying to get balanced,,,I hope your gp is fully supportive of what you are wanting to do,,and to give you the time off,,,,,,ttfn from Karen.

 

[CarbsRok]

Hello Kerry,
it's just a suggestion for you to try/ discus but do you think it is actually the insulin you are using? I have heard many times in the past that Lantus in particular causes some people extreme tiredness. If all blood tests are normal then do ask to try another type of basal and see if that helps.

Your fatigue could be entirely un diabetes related though. I have ME and the fatigue I suffer from is not good, I'm lucky in that I am not as bad as some people ie. I can function as long as I pace myself.

 

[AndBreathe]

We don't have diabetic counsellors freely available we just have a diabetic nurse who isn't trained as a counsellor and mainly focus's on my blood readings and carb counting, everytime I mention how im feeling its kind of brushed off as being newly diagnosed as I will feel better soon ! My hypo's have no set pattern at all to be honest they happen when they want for no real reason, I can test at 9am all good then re-test half hour later when going into hypo. Carb calcs are fine also. The only explanation given to me is that I am super sensitive to insulin.

I believe Diabetes UK have a phone line support service which may be useful to you: https://www.diabetes.org.uk/careline

I don't know anything about it myself, but I seem to recall @noblehead suggesting it to someone else. I have tagged Noblehead, but he may not be around during the daytime hours.

Worth a call?

 

[Daibell]

Hi. As someone else has suggested it may be worth trying different insulins. Levemir is now the NICE preferred Basal and has slightly less problems than Lantus, although Lantus is usually fine. Also for the rapid you could try NovoRapid which is very popular. There may be a good reason for you being on the current insulins, but if not do suggest to the GP that it's worth trying change?