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Type 1 Burnout

B

BalTH

Member
Messages
5
Type of diabetes
Type 1
Treatment type
Insulin
I think I need some help.

I’m not one for writing on forums, sharing out loud or asking for help but yet again I woke up this morning with a feeling of total dread towards yet another day with type 1 diabetes. I was diagnosed on 3rd November 1975, nearly 40 years ago, and to be honest I’ve had enough of it! It hasn’t caused me too many other health problems apart from a short period of neuropathy that caused me to have double vision in one eye, and that should have motivated me but the feeling only lasted for a brief time. I take tablets to control blood pressure and cholesterol but have never suffered ill health from either of the conditions they are supposedly controlling.

The problem is I am exhausted. I feel tired every second of every day. For nearly 40 years either consciously or sub-consciously I have been thinking about what I eat, what I drink, how I exercise, when I exercise, working, driving, walking the dog, partying, sitting on my backside watching TV, going to the pub, sitting on a train, flying, when to do a jab, when not to do a jab, where to do a jab (both on my body and in what location when out and about), how to do a jab (deep in the skin, only slightly in the skin), carb counting, blood tests, hypos, hypers, HbA1c results, etc. etc. etc. It just goes on and on and on and on.

I’ve never really followed any of the rules and I really can’t motivate myself to do regular blood test as you can imagine how sore my fingers would be by now. I guess I’ve been lucky so far, but because I really can’t be bothered any more my long-term bloods are creeping up (the latest was 10.7).

There are times when I used to think I’d beaten it and I had control but for the last few years I’ve realised that this bl**dy disease is always going to have control over me! I don’t have the energy to keep fighting it so it seems to me that my only option is to give into it, live me life without worrying about, and let it consume me.

That’s why I think I need some help.
 
hi there
I think you do need some help too( hopefully we can help )-- your post carries a lot of things that I am sure we all feel at times.
I definitely can relate to much in your post as I have been T1 for 43 years myself !
here is a link to read on diabetes burnout http://www.diabetesexplained.com/diabetic-burnout.html
and to the 5 stages of grief ( which is very much related ) http://www.diabetesexplained.com/the-five-stages-of-grief.html
a thanks to @catherinecherub for the links.

I am also tagging some great people to hopefully drop by and offer some support.
@noblehead , @zand , @azure
 
Hi @BalTH

Sorry to hear how much diabetes is getting you down. We all understand here. It's a pain in the neck, and yes, there are no days off from it. Most days I'm fine, but some days I get quite resentful at all the mental energy it takes. The way I deal with it is by not letting it win - that is, by keeping my blood sugar within range as much as possible. That way I don't 'feel diabetic'.

I'd also add that if your sugars are high, it can make you feel extra bad and high sugars might be contributing to your tiredness too.

Do you have a supportive DSN or GP or consultant? Maybe talking to someone and perhaps having a good overhaul of your insulin regime might make you feel physically better at least?

If you're feeling really down, your GP may be able to suggest some kind of counselling. I know many people find that useful.

Diabetes is a full time job on top of everyday life, but you can always be in control. Don't let it win. Even if your sugars aren't so good, you're still in charge and it's you who makes decisions not your diabetes.

Post here as much as you want; moan as much as you want; and ask any questions you like. We understand how hard it is.
 
Thanks for your support. I do attend the diabetic clinic 6 monthly but to be honest, although I don't suffer from hypos, I don't want to give anyone an excuse to suspend or take away my driving licence so I really don't talk to them in too much detail. I am also fed-up with the GP telling me that I'm not controlling my blood sugar levels and have to keep explaining that I am controlling them at the level I want them so as to avoid any hypos. I just don't think they get it as they want me to do everything by the 'book of normalness' which I think only applies to a limited number of people.

I know higher levels probably add to my tiredness and it then becomes a bit of a viscous circle, i.e. I'm tired so can't be bothered, which means I don't apply the detailed focus that the condition requires, which means that my levels are higher than they should be. I also know that it the long term higher levels could result in internal organ function issues, but to be honest, apart from feeling tired and fed up with the condition, I generally live a normal life doing things my way, so why do I have to keep listening to so called experts. Today, is the first day for a very long time that I've realised I need to take some action, but I'd like to do that without involving many, if any, medical professionals.
 

I understand where you are coming from BaITH. When I was working I let my bloods run high mostly; I was scared of losing my job by hypoing. Now it's easy being retired. Long term high bloods - well, I wont bother to list the damage they can do because you know. My personal guess is that you are not testing enough to actually CONTROL your diabetes. Yes, it is a battle and you can only win by taking control. Good luck
 

Hi and welcome, this is a link on the forum, it could help you understand a little better about what you are going through. I think many of us have felt like you do at some point in time. You are not alone and anything you need to ask, or have a moan about ( we proably all do it )!! there are plenty of members with lots of helpful advice and support.
Take care RRBx

http://www.diabetes.co.uk/forum/threads/diabetes-burnout.74048/
 
You can take action yourself if you want to tighten your control a bit Are you on multiple daily injections? Do you count carbs?
 
Azure - you make a good point and I know that I can take action myself, but my point is I'm just fed up doing it each and very day of my life.
 
Thanks for the tag @himtoo

I'm not sure what I can say to help. I have only been T2 for 4 years and to be honest get pretty fed up with it at times too. I can understand you feeling that way after 40 years of being T1.

You know you can get better control and that if you get better control you probably won't be so tired. So somehow you need to get yourself out of the vicious circle you are in now. Easy to say, not so easy to do.

Yes T1 will always be there, but it hasn't beaten you until you give up. I usually find that good results encourage me to try even harder and bad ones make me just want to give up altogether. Can you try to improve your control before your next HbA1c? Would that maybe encourage you to keep on the straight and narrow?

The other way, the easy way, just sit back and let it consume you wouldn't be easy at all once the realities of the complications crept in. I'm not going to talk about the scary outcomes. You know them already. You are fortunate to have been fairly healthy until now, believe me, being ill and having to rely on others is horrid.

To me, you sound depressed. The exhaustion, the lack of motivation etc point to depression, which isn't uncommon in diabetics. Have you spoken to a doctor about how you feel? People suggested this to me a while back and I was horrified to think that I would need help. I fought it for ages. Eventually though I did speak to my GP who was very understanding and gave me anti-depressants and arranged for 8 sessions of counselling for me. It helped me immensely. I still have down days, but now I care about the future more and find it easier to cope.

Sorry I wish I could say something really helpful, but that's all I have.

Take care. Keep talking.
 
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Yep, its d*mn tough going. Not quite 40 years, low 30+ years as T1.

At times I have felt like you but to be honest mine wasn't all diabetes. I improved the rest of my life. The ups and downs of my personal life did affect my diabetes. My mum (bless her, I do love her dearly) but she caused me stress. When I finally learnt to cope with that, then that was a problem eliminated... Other factors in my life have at times affected my general thoughts about myself.

I took my hubby to a superb counsellor who went through our thoughts and how we affected each other. He told us some home truths and boy... That made me realise a lot about myself. The Counsellor actually told me that since my diagnosis I accepted 2nd best... Not directly linked to my hubby-lol!! But it was true. Eg My thoughts when I recently joined the gym were to my instructor.."I'm not competitive, I just want to do enough to keep fit".... Well, actually.. That was me thinking again that I'm not going to be good at this so I'll just do enough. Wrong... I've changed due to a superb personal trainer. I "deserve better" so I am going to do better...

Diabetes is **** tough. I fully understand that but we both know there's no cure so we can lie down and roll over and be miserable with it or we can kick ass!!

Due to a driving incident my driving licence was threatened. I kept it and despite being shouted at by my consultant (1st appointment) my new DSN was woderful and got me fitted up with a pump immediately.
Since then I moved hospitals and met a fantastic team of consultant and nurses. I live them and they love me.
The care and confidence that your hospital team give you is important. I know how badly I was shouted at and told by this horrible consultant that I deserved to lose my licence for at least 12 months etc...if it hadn't been for a wonderful DSN and a different consultant at that hospital well to be honest I don't think I would be here. That one consultant made me feel so bad.
Have you considered going to a different hospital? Gp's are **** at looking after T1's.... Just that there are some fantastic consultants and dsn's out there.

I still get an odd time when I may say to my personal trainer that I wish I could just have one day off from testing and injecting... But then I said to him.."what would I do with that time?".. What would I do instead of coming on this forum?? Honestly.. I haven't got a clue.. I'd probably be stuffing myself with buscuits n cakes - I wouldn't be as healthy as I am I am sure of it.

I wish I could wave a magic wand but I would advise talking to someone about this.
 
You're not alone...I'm fairly sure that we all feel like this at times...I know I have.

Thing is...you've done so well to have so few complications despite living with it for 40 years...don't give up now.

As @Robinredbreast suggested...check out the diabetes burnout thread...I've found it incredibly useful to know that I'm not the first or only person to feel this way and the advice and support is endless.

All the best

Natalie
 

Your going to have to have a big gob for buscuits dd, that did make me smile and I am on and off double deckers all day
You've got to smile and try and keep your chin up @BalTH
 
I think it is a bit of accepting who we are... We aren't labelled with diabetes on our heads so sometimes but 'we' just need to accept that it doesn't label us...

I dread to think of what I would have been if non diabetic! Probably the same size as my hubby was before he changed to my way of eating!!

In fact nowadays since the brilliant counsellor I would say that I see diabetes as a positive! I've made fantastic friends from joining my PPG- why did I join? To give something back to the NHS for keeping me alive all these years with D!! I wouldn't have done this without diabetes.

Now off to have those buscuits........

@BaITH .... it is tough... And I've made light, but I've given some background to what helped me. We are all different to find things that help us cope.
 
 
i think the OP just about sums up the way I am as well, in fact I could have posted just about the exact same comments, although I have only!!!! been T1 for 34 years.

My bloods do tend to be a little high as we at about 8.5. At my last diabetic clinic the doctor thought I was starting to develop some insulin resistance as i was taking fairly high levels of insulin. About a month ago I was advised to double my Metformin dose which worked well for a few week, my insulin dose was reduced by about 10 %, but it Bg have started to creep back up again.

What is infuriating is I each pretty much the same foods each day, porridge for brekkie, a sandwich for lunch and a typical evening meal would be chicken with some potatoes and a veg. I have stopped eating crisps, not had a drink for weeks, not that I ever drank a great deal,. Bedtime bloods are about 5 or 6, some morning they rise to 13, others I have a low blood sugar at 3am. There seems to be no pattern at all to this, and I just want to scream, what is the bloooody point
 
When I posted my thread I realise now that it was as much about getting my feelings off my chest as it was about expecting any help, so I was genuinely surprised by the words of support that people have taken time to write. Even the latest post by smc4761 made me realise that I'm not alone in how I feel. I've never ever done things by the book and in a way that is what I should hold onto when I'm feeling down. I do extreme sports, I have multiple tattoos, I like a beer or two and I don't religiously count carbs, but over the years I have found a way that I can 'own' my diabetes and not let it dominate my life.

I think maybe owning it and accepting it are two different things. Even now after nearly 40 years I still don't like doing my jab in public. When I'm sitting on a train and need to do a jab I'll get up and go to the toilet rather than doing it where I'm sitting. That makes no sense really and I'm not embarrassed about being a diabetic, I just don't want to advertise it.

I have a good DNS who understands that I want to control my BS at a higher level, it's just the GP that doesn't understand that and it gets me really down when there is no obvious reason for my short term jab not to kick in and there are days when I can do 2 or more jabs and nothing happens which means I end up feeling rough. Can I discuss this with my DNS or GP? Not really as they'll just start to question my control and then I start worrying about losing my driving licence (at least that is my flawed thinking).

Sometimes I let the decease get my down to the point of despair, as in earlier this week, other days I try to take positive control, but what works for me most days is just consciously ignoring it while sub-consciously still applying all of my unwritten rules.

Am I suffering from depression? I honestly haven't really considered that, or if I have then I've tried to ignore it. Maybe counselling would help me and I will consider it, but I have realised this week that writing this thread, reading comments and telling you how I feel, has been really catholic for me and has really really helped me. It also got me thinking that once I've sorted myself out I'd really like to share my experiences with others in the same situation as I'm now convinced that I have a voice with experience about what it's like living with T1 in the real world over 5 different decades (diagnosed 1975), which as we all know, is not necessarily what the medical community claim is the way that we should live with the condition.

I really do feel more positive today, and will continue to read and respond to this thread and try to keep this positive hat on for as long as possible. Thank you!
 
Totally inspirational Sir !!
I hope you do help out here with your experience - you have a wealth of experience to offer !
 

Hope you're feeling more positive today.

Read your comment about injecting in public, I think your mindset would change if you could do this, it's not that you have to make a statement by doing it in public, however it means you've accepted it if you're prepared to take your insulin when you need to. I always discreetly inject but when first diagnosed I was embarrassed/ashamed to inject in public, now I really couldn't care a hoot, I don't care who sees or who judges me, I have to do it, also most of the time I have my young daughter with me and if I didnt inject when i needed to then I would probably forget to later so always do it when required.

Managing type 1 is like walking a tightrope, it's staying balanced that's the key and having a good ole moan when you need to is essential, here your amongst friends who understand exactly what your going through
 
Thanks Juicyj. Doing my jab when and where I need to sounds like a small step that could have a big positive impact. I think I might just give that a go!
 
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