Really struggling

[Woodywoodpecker]

I agree, took my eyes nearly 8 weeks to get normal focus back again, even though my BG was generally usually lower than yours - certainly knew what hypos were.

Nobody else seems to have stressed this point but I really don't believe your GP is fit for this purpose hence the suggestion to ring your hospital Diabetes Specialist Nurse asap is excellent. They really do carry more than a bit of weight with GP surgeries!

My gp and local diabetic nurse were useless, 7 months a told them something wasn’t right, but all a got was eat more. Hospital could not believe the carry on with them, and all my symptoms were pointing to type 1. My insulin was marked as urgent from hospital, they couldn’t even put my prescription through, hospital went down through them which they were not happy with, said wasn’t marked urgent. They had cheek to phone me and say we are here if you need anything, not bloody likely will phone hospital

 

[Tdm]

When i was first diagnosed, i remember feeling really weak. I worked for a bit, but then had to take time off work. I remember laying on the couch and doing little but testing my sugars and trying to stay alive (they started me on 10 basal. I normally need 2. It was a rocky start).
Dibetes was all i could think about.
I was a mess for a bit! Couldn't do anything without sugars crashing. It all felt totally out of control. None of my clothes fitted. I threw out my cooking books, though cake were a thing of the past etc etc

But it does get better. My turning point was went i took control of my insulin dose. Probably too early for you to do that yet, but it will come with time.

It will get better. You will figure this all out. We've all been there and come out the other end, and so will you.

Off to buy some cake and choccys.

 

[Ivostas66]

Thank you for your great advice. It’s so hard isn’t it? I’m used to working full time and feel I’ll never get back to it. The blurred vision is getting me down. I know you’re right and it will get better, just feels so far away. Sorry to hear you’ve been through so much too

Looking back, I think I was initially off work for about 3 weeks. I was desperate to return as I had been promoted that September and really didn't want this diagnosis to scupper everything. My first 'day' back was at the leadership conference. The day before I had to head out to the shops to buy new clothes as everything in my wardrobe hung off me! I've always been slim, but now looked very thin.

I wasn't offered a phased return and I probably wouldn't have taken it at the time, but it would have definitely benefitted me. I had a period of very unstable BG that summer, and missed the final 2-3 weeks of that term, having to work hard with my DSN from the hospital to find a regime that worked. All during the dreaded and inappropriately named 'honeymoon period'. I would push for a phased return if you can with you employer/ HR when you eventually return to work.

Remember, that at the moment you are in the honeymoon period. From hearing people's experiences on here, it can range from a few months to a couple of years. For me it was about 18 months. My DSN said that the best way to describe it is to imagine your pancreas now has a terrible memory and has completely forgotten what it is supposed to do, then randomly and without warning it will remember and kick out some insulin. This will then cause your BG to drop unexpectedly. Over time this tails off (thankfully).

Have a look at the 42 - there are at least 42 things that can cause your BG to rise or fall. Many of them we have very little control over. A big one for me is stress as well as illness. There are sick day rules too, which you can find on here, that are very helpful for when you are unwell. These are the sorts of things that you can discuss with your employer and as you are now covered by the Equality Act, they should listen. Make them aware of what you need from them regarding testing, treating a hypo or hyper etc.

 

[Woodywoodpecker]

When i was first diagnosed, i remember feeling really weak. I worked for a bit, but then had to take time off work. I remember laying on the couch and doing little but testing my sugars and trying to stay alive (they started me on 10 basal. I normally need 2. It was a rocky start).
Dibetes was all i could think about.
I was a mess for a bit! Couldn't do anything without sugars crashing. It all felt totally out of control. None of my clothes fitted. I threw out my cooking books, though cake were a thing of the past etc etc

But it does get better. My turning point was went i took control of my insulin dose. Probably too early for you to do that yet, but it will come with time.

It will get better. You will figure this all out. We've all been there and come out the other end, and so will you.

Off to buy some cake and

When i was first diagnosed, i remember feeling really weak. I worked for a bit, but then had to take time off work. I remember laying on the couch and doing little but testing my sugars and trying to stay alive (they started me on 10 basal. I normally need 2. It was a rocky start).
Dibetes was all i could think about.
I was a mess for a bit! Couldn't do anything without sugars crashing. It all felt totally out of control. None of my clothes fitted. I threw out my cooking books, though cake were a thing of the past etc etc

But it does get better. My turning point was went i took control of my insulin dose. Probably too early for you to do that yet, but it will come with time.

It will get better. You will figure this all out. We've all been there and come out the other end, and so will you.

Off to buy some cake and choccys.

You have just described how I felt, enjoy your cake and choccys

 

[vicky1974]

My gp and local diabetic nurse were useless, 7 months a told them something wasn’t right, but all a got was eat more. Hospital could not believe the carry on with them, and all my symptoms were pointing to type 1. My insulin was marked as urgent from hospital, they couldn’t even put my prescription through, hospital went down through them which they were not happy with, said wasn’t marked urgent. They had cheek to phone me and say we are here if you need anything, not bloody likely will phone hospital

I know how you feel. I’ve just managed to get through to them and they said the same. Call us again if you need us. Get signed off and put insulin up 2 units a week?

 

[Woodywoodpecker]

I know how you feel. I’ve just managed to get through to them and they said the same. Call us again if you need us. Get signed off and put insulin up 2 units a week?

Have you not got a number for hospital diabetic clinic, that’s who I phone if need help. I’m up on the 18th December for my last appointment with doctor

 

[vicky1974]

Have you not got a number for hospital diabetic clinic, that’s who I phone if need help. I’m up on the 18th December for my last appointment with doctor

Not for the clinic, I’ll try and find one. Thanks

 

[trophywench]

@vicky1974 - start a new post entitled with the name of your hospital merely asking 'Anybody know the direct hone number of the D clinic at this hospital, please?' cos the chances are someone else on here will know, eg I know mine, though it isn't publicly easily available.

 

[Inka]

Not for the clinic, I’ll try and find one. Thanks

Phone the hospital reception and ask to be put through to the Diabetes Outpatients Dept. They should have a receptionist who can give you the number to the DSNs and/or get them to phone you.

 

[Riggers]

Vicky you could be describing me a year ago!
It does get better/easier/more usual life…I don’t really know how to put it. Just hang on in there and it will get more manageable.
Being on here has given me loads of information and support, mostly just reading other people’s experiences.
Your DSN will be more helpful than the GP (my experience). Mine has an emergency hour to ring them and can also be emailed and get back quickly.

Take care

 

[Amity Island]

Hi

Hi everyone. I’ve posted a couple of times and you’ve all been so helpful. I’m really struggling though.

Recent diagnosis of type 1 diabetes at 50. (4 weeks) Spent 6 days in hospital with DKA. Currently 22 units lantus and 8 units Novorapid. Diabeties nurses were meant to call today but didn’t.

My sugars are just so high. Libre sensor is 14.4 on average and time in range is 3%. Estimated A1C is 92mmol. I’m eating a healthy diet, limited carbs and walking the dog twice a day. I just feel awful. Ketones 0.5.

I’m confused, tired and my blurry vision is awful. Can’t see to drive, family think I’m home and alls well, they just don’t understand. Can’t work, never been ill in my life. It’s really getting me down. Called Gp for a sick note and he said I should be back at work by now?

How long will it be before things improve? I’ve been told to increase lantus by 2 units a week and it’s making no difference. Nor does a 2 unit correction dose. My best reading was 9.7 and that was once in 4 weeks. 16.2 every day when I get up. Not sure I can cope.

Hi Vicky,

Soon after diagnosis, to help, I'd stick with same meals, same time, same amounts, this leaves one free to focus solely on the insulin adjustments based on fixed meals.

You are probably closer than you think to getting into a better range. Just a small adjustment will make a big difference.

Regarding the no effect of taking 2 correction units, it took me some time to realise that when my blood sugar was 13mmol or above I needed to take extra units PLUS the usual correction dose units. Without adding those extra units first, any correction units made absolutely no difference to reducing blood sugar. Everyone is different, it's very much trial and error.

 

[rebrascora]

When our levels are high, we naturally become more insulin resistant, so it can take more insulin and need longer for it to work. I used to find that if I was up in the mid teens it would take hours for Novo(not so)Rapid to work. You also have to consider that you might be producing some insulin of your own and you pancreas might eventually spit some out along with that correction, so during the early moths, you have to be quite patient and see how that correction works an give it time to work.
As regards your basal increases having no impact, it is surprising how, once you get close to the balance point it will just suddenly tip, and you can very easily overdo it and end up hypo, so making slow steady changes is important and whilst it might not seem to be making a difference, you will gradually be getting closer to that tipping point. I think they usually recommend increasing by 2 units every 3-4 days because it takes about 3 days for the full impact of that change to work through and then a day to make sure before you increase again.

I know you will be anxious about these high levels but in the scheme of things a few weeks or even a couple of months is better than suddenly dropping and having hypos as well as highs. It is very easy to set that roller coaster away of too much insulin causing a hypo and then over treating it in sheer panic and going high and then over correcting and going low and it feels really bad, so slowly increasing and gently trending downwards by a mmol or 2 until you come into target range is much kinder to you physically and mentally. So try to have a bit more patience.

 

[Pam123]

Although I am Type 2, I am on basal insulin, to begin with I was also told to increase 2 units every 3 to 4 days days for the full impact to work, it took a couple of months before my BS were lower and more stable, I know how your feeling and I found it very stressful but like there have said it will get better.

 

[Tdm]

Do keep us updated with how you are doing, if you're confortable doing that