Type 1 for 41 years. Feels like I am losing my way.

[fittaedae]

Hi
Nice to see that someone has reached burnout as I have.
Tomorrow I start DAFNE course in my local area, have you enquired about that? I am nervous and will be with other people the same as you and I, will I like that I am not sure, have no one I can turn to so I suppose it may be worthwhile, I dont know but will have to try and cure my burnout and hypos to date, hope you can enquire for some course near you, it may be quite a wait but will be support and worth it, I am sure....
I have been diabetic for 47 years and am struggling like you with forgetting, hypos, depression why oh why has it taken over my life, probably how you feel isnt it?
What area are you from?
MadMaureen xxx (soon to be!!)

Hi Maureen, I am in Aberdeen, Scotland. I have done the DAFNE course many years ago, its now stopped in Scotland, I had already been doing it myself for years as I read avidly and research.

It just feels right now that nothing is going right (in my life and in the world in general) and yes I feel its taking over. I feel really really guilty because I know how important it is, but just cannot motivate myself. If a genie appeared one of the three wishes would be "can I have just one day off from Diabetes.... please?" xx

 

[fittaedae]

I now where you are at. I got Type one at 21 years of age and now 62. I deal with it by reminding myself what I have done and achieved. Two great daughters living in New Zealand with great lads as their partners. Travelled the world, held down senior and stressful jobs. Stayed active, retired from playing soccer 44 years of age. Surviving attack of Cellulitis after an injury, several times as it kept coming back and getting sepsis. Living in South Africa, Ireland, all over the UK and now running small business in Cyprus! Travelling the world and with the pain of customs, whats this sir can we check it, we must swab it, I have a pump. And the Diabetes is still a pain in the bum even with good control. I will tell you what though you have to pat yourself on the back and say well done to yourself as a lot of people do not understand the routines, the disappointments, the pain of being type one! My main thought is before 1921 and Banting and Best discovering insulin that could be injected we would all of us not been here, so putting up with the pain Hba1c results, visits to the hospital, check ups blood tests, special diets hell lets show the world we really can do it!!!! I consider myself the diabetic who can and screw anyone who thinks different, thats how I deal with it, I even give the Doctors hell if I think they are talking rubbish and yes they do sometimes! They can also be right as well which can be a bit infuriating, but the main thing is we are here and not alone worldwide we are millions.

I am so glad we have the blood testers and technology we have now believe me!

I had the test tube and tablet with the potty and wee to test for sugar in urine as a child, felt like a chemisty master though! I went through the glass syringes and Mum having to boil them and sharpen the horrible needles we had to use repeatedly. I remember the first automated blood finger pricker called the Autolet, bloody guillotine in my opinion I can still feel the pain!

Yes I have been through the bag emptying etc. **** near strip searched due to having a SEALED box of glucose powder in my hand luggage as could not get glucose tabs then, that was fun! I was also denied to fly home from Germany unless I gave the pilot my insulin etc in the cockpit one year to the day after 9/11 and they were not going to let me take my insulin that I needed on a flight, must admit they horrified me when they took a very young baby from the lady beside us and actually put the child through the scanner... chaos ensued, people pressure and me and baby got on!!

KLM are fab in my opinion as if you tell them you are Insulin Dependant Diabetic they put it on the system and check ensure all staff you meet know and acknowledge it, right up to the stewardess coming to find me before take off telling me if I needed anything to press the button and they would help also telling me with a wink they had a stash of jelly babies!

 

[fittaedae]

I was in a similar position, overworked & my head was full of wee cars bumping in to each other & keeping on top of my diabetes was another "thing I had to do". I was burnt out. First thing I did was to get put on a carb counting course through the BUS & I bought off of Amazon the carbs & cals book, it's brilliant. I'm like you & stuck to a PC @ work, so I set up a spread sheet to record my BG results, what I'd eaten, what activities I'd done, etc. It really, really helped & put structure back in place. If you message me & I can give you more details, could even send you the spread sheet for a starter for you if you wanted. Best of luck.

Ooh I do love to compile a spreadsheet! I know I am a bit of a geek That is a great idea if I can keep it up! Gonna give that a try now, thank you!

 

[fittaedae]

@fittaedae . So sorry to hear of your struggles and I honestly wish I could offer something worthwhile.
Here goes a mere thought, my sister in law, not a diabetic, but a similar age to yourself a while back reached " an age " in her life ( I think you may have allluded to this, but not sure ). The dreaded menopause, to cut the story short, she became a totally different person to what we all knew. Strong, controlled, confident it all changed. She did get back on track but it took time.
As a guy, apologies if I'm completely wrong, I'm no expert on this subject.

Yeah you are correct, I have hit the top of the hill and am now hurtling down the other side rapidly *sigh* Brain fog, walking into a room and cant remember why I am there, calling my partner and he dont answer and by the time he calls back I cant remember why I called him!! Weight gain... good excuse for a few new items in the wardrobe to cheer me up though! Its either menopause or dementia!!

 

[donnellysdogs]

I had brain fog from cancer treatment and tablets knocked me flat and on my **** to be quite frank.. so I know how brain fog can screw you up.. however..
do consider that it could be levels of concentration.. and also fatigue. Sounds like you are struggling at the moment so all of this "brain fog" can be quite annoying...and quite hard to get over.
You do need quality sleep and some quality time in your life... I knowvyou are referring to diabetes and my goodness I agree with losing your way with it..

However, Despite my 4am need for injections and that routine in morning bugging the heck out of me sometimes... And this gives me less concentration because I never get more than 31/2 hours full sleep in one go... so perhaps establishing some quality "you" time may help.

My "me" time is now my puppy dog. We all find different things, I also do therapeutic art.

I had to get some different relaxation time for me..

Just perhaps thinking this may improve concentration and your brain fog??

 

[fittaedae]

I got a Freestyle libre, really helped because I could so easily see what goes on with BGs. 40yrs T1 so understand where you are at.

FYI - just been informed by my Diabetes Specialist Nurse who went and enquired with the top brass at my clinic and the Libre system will not be available in Scotland, Ireland or Wales..... only England.

 

[fittaedae]

I had brain fog from cancer treatment and tablets knocked me flat and on my **** to be quite frank.. so I know how brain fog can screw you up.. however..
do consider that it could be levels of concentration.. and also fatigue. Sounds like you are struggling at the moment so all of this "brain fog" can be quite annoying...and quite hard to get over.
You do need quality sleep and some quality time in your life... I knowvyou are referring to diabetes and my goodness I agree with losing your way with it..

However, Despite my 4am need for injections and that routine in morning bugging the heck out of me sometimes... And this gives me less concentration because I never get more than 31/2 hours full sleep in one go... so perhaps establishing some quality "you" time may help.

My "me" time is now my puppy dog. We all find different things, I also do therapeutic art.

I had to get some different relaxation time for me..

Just perhaps thinking this may improve concentration and your brain fog??

I used to do cross stitch, colouring in books and beading... never get the time now, cant seem to get the time either. I take time to play with my two Labradors and we have a group cuddle!

I agree I must make more ME time, I must get my partner to take some HIM time also! Would help the situation no end!

 

[fittaedae]

You might not need to! Peppergirl's just posted a thread with a link to an announcement saying that libre has been approved for the NHS:

http://www.diabetes.co.uk/forum/threads/libre-on-nhs.126334/#post-1559138

Each individual health area formulary will still have to ok it for prescription in their area and that process is likely to take some time, but it's definitely a step forward.

I've been using it for about a year now, it definitely levels the playing field, takes a lot of the unpredictability out of T1, well, doesn't remove it entirely, but when you can see from the graph that levels are trending down towards 4, just being able to proactively take 5g so that the hypo never even happens, it makes it a much fairer game.

Spoke to Diabetes Specialist Nurse just now, she checked with top brass at Hospital... will NOT be available in Scotland, NI or Wales.... ONLY England. Accountant is on it and will let me know as soon as they have the facts about the employer scheme.

 

[gshaw100]

Hi. I've been Type 1 for 42 years since the age of 7. I am also self-employed working from home (for 5 years now). I try to do the 'right thing' with the diabetes management but some time ago (not soon enough, looking back), I stopped concerning myself with what doctors and others were advising - yes, they meant well, but most of them don't live with diabetes and even if they do, most have probably not had to deal with it for a long, long time. I have often felt that an ideal day would be spent somewhere with an intravenous drip in my arm so that I didn't have to inject and for a nurse or doctor to monitor my blood glucose without me having to lift a finger!

The things I have done to cope over the past 42 years include (in no particular order):

- allowing myself to be a human being first rather than a diabetic first; e.g. if I feel tired, I used to think it was because of my blood glucose level not being 'right' - I wouldn't allow myself to accept that I was tired because I was tired!

- accepting that I suffered from periods of depression due to having to deal with diabetes and making opportunities to try different psychological approaches, such as cognitive behavioural therapy (CBT) to treat trauma - and diabetes can be traumatic, of course!

- accepting that I do forget to inject from time to time and not to beat myself up about it - has taken me a VERY long time to really do this one!

- trying to find quality of life: I like working and I try my best in everything. I think I know (!) that I need to spend time playing or hanging out with my daughters just as much as I need to test my BG before eating.

- accepting - albeit with a lot of frustration and sometimes anger - that no matter how good I try to be as a diabetic, there are mysteries to how my body (and mind!) act, e.g. a carb-free breakfast and lunch but my BG rises during the afternoon to very high levels! Stress, in particular, can do strange things to my BG control and I've never really found an 'answer' to address it.

- and finally, sometimes saying "to hell with it!!!" and have a massive 'death-by-chocolate' because psychologically / emotionally, etc., I really need the break - and not to beat myself up about it, especially when my BG shoots up high!

Perhaps the most useful thing I can do is to tell you that you are not alone. I'm sure there are many, many people suffering in the way you are and have the same kind of questions as you do and, perhaps, some who find it hard to carry on coping and dealing with diabetes. 'We' are all there in spirit (I don't mean that from a religious perspective!) in some kind of way with you, even in your darkest moment...

WIth very best wishes.

 

[gshaw100]

One thing I forgot: try somehow to make time just for YOU. Not easy, but you have to find time to just be you, whatever that is for you.

 

[Jessitalia]

With a pre-occupied mind (like yours is first thing in a morning) I can see how you could easily forget your insulin @fittaedae , hope you find a solution.

What about a novopen 5? It automatically tells you when injected. I got 1 for my levemur cos I can never remember if I took it or not. (T1 for 27 years and useless but no complications)

 

[Scott-C]

Spoke to Diabetes Specialist Nurse just now, she checked with top brass at Hospital... will NOT be available in Scotland, NI or Wales.... ONLY England. Accountant is on it and will let me know as soon as they have the facts about the employer scheme.

Oops, after getting caught up in the excitement of it, I kinda forgot health is devolved!

I'm in Scotland too, so will watch with interest how this develops. I wouldn't put it past our esteemed First Minister to say, "right, they sassenachs are bringing it in in November, we'll do it in October!"

 

[steve_p6]

FYI - just been informed by my Diabetes Specialist Nurse who went and enquired with the top brass at my clinic and the Libre system will not be available in Scotland, Ireland or Wales..... only England.

I doubt it will be that easy to get even England as will not be budgeted anywhere this year.

 

[LizzieNI]

Did you see today's news?

 

[LizzieNI]

Spoke to Diabetes Specialist Nurse just now, she checked with top brass at Hospital... will NOT be available in Scotland, NI or Wales.... ONLY England. Accountant is on it and will let me know as soon as they have the facts about the employer scheme.

The announcement says UK wide......

 

[donnellysdogs]

I think Nurses etc at the moment have not got the correct information. It wont have filtered down yet. It may take many weeks to do so.

 

[noblehead]

What about a novopen 5? It automatically tells you when injected. I got 1 for my levemur cos I can never remember if I took it or not. (T1 for 27 years and useless but no complications)

Indeed, I was using the NovoPen Echo before going on a pump, the Echo also has a built-in memory device.

 

[David1963]

Haha! I already have post-it's everywhere, they usually end up stuck to us or the two dogs, still miss important reminders! Ideally a wee leprechaun who could run up in the morning etc and kick me in the shins and shout "insulin" now that would be perfect!

Hi sorry to hear about your problems. I went through a similar experience about 12 years ago, when I had had Type 1 a similar time to you. Going on to a pump helped, but I read that this is something you maybe don't want to do? Would recommend it. I think sometimes it gets too much after a long time but we come through it. After 54 years of Type 1 I feel better than ever. A few complications in the past, and I do a lot more monitoring than I used to, which probably helps. I hope this forum helps. Lots of us out there! Talk to your diabetic nurse, try to talk to other diabetics. Good luck!

 

[Bowlerhat]

Looking good to qualify for a libre system which has change my life after 37 years type 1 but I've payed over 4K over the past few years and today they announced from 1st of November there available on the NHS for certain criteria people so be one of those ,Tim ( bowlerhat)

 

[videoman]

Good luck to you,yes it does creep up on you and slowly things can go wrong as in my case.I am a Type one from 14 years old to now which is 71 and slowly things go wrong but you can slow it down by following the best you and your team of doctors give you,so good luck