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Confusion over tiredness

Discussion in 'Type 1 Diabetes' started by Lynz84, Jul 7, 2017.

  1. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Hi Everyone,

    A little confused by differing opinions on tiredness for type 1s. I am very tired a lot. I have no underlying conditions and no deficiencies and sleep and eat fine. My sugars are largely under control aside from the odd blip or really hot weather like we have just had. My DSN has said that its just part of the condition which is totally ok but.....when on this forum, people tend to say that we shouldnt be tired just because of diabetes so I am a bit confused.

    Do any of you suffer this tiredness with no other explanations? Ive read up on it and fatigue has been attributed to type 1 even when well managed so not sure why thats not more commonly said in other threads.
     
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  2. Kim Possible

    Kim Possible Prefer not to say · Expert

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    I guess everyone is different.
    However, I have no less energy now than before I had type 1 unless my BG is too high or low.
    I exercise regularly - cycling, running, walking (12 miles and more some days), climbing, gym, ...

    Based on my small sample of 1, I would disagree with your DSN.
     
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  3. Peppergirl

    Peppergirl Type 1 · Well-Known Member

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    Hi Lynz84

    Having had variable control over my diabetes for the last 25 years, with the exception being the last year when I pulled my socks up, I can say I always felt tired. It was probably a lot to do with stress/anxiety due to poorly controlled blood glucose levels and to some extent I just got on with it and assumed it was normal to feel that way. I would probably have said many times during those years that my levels were under control as far as I was concerned. But knowing what I know now, my blood sugars were not well controlled. I always felt a bit rough. I find that there's nothing more tiring than worrying about and treating high and low blood sugars.

    Anyway, after switching to low carb last year and seriously bringing my blood sugars under control (90% of the time I'm between 4-7, only going up to 8 very occasionally and double figures are now so few and far between I can remember exactly when I got a 15 temporarily before correcting), I can honestly say I've never felt energy like it. So maybe look at your blood sugar swings and see if there is any improvement you could make?

    IMHO I don't think tiredness is part and parcel of type 1 unless there is an issue with blood glucose levels or other underlying issues. I find there is a lot of assumption about type 1 and what is expected and not expected, based on HCPs experience as they see a lot of us with varying degrees of control. So, if I was told that being tired is expected of me etc as this is the experience of HCPs, I would question that.
     
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  4. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Well now i feel rather disheartened. Thanks for your honesty though guys xx
     
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  5. EllsKBells

    EllsKBells Type 1 · Well-Known Member

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    Hi @Lynz84 I am going to buck the trend here and say that I can't remember ever not being tired since I have had T1. However, not-so-small caveat to that - I am a terrible insomniac, struggling with control, have been iron and vit D deficient, and various other health problems (what can I say, my other organs are getting jealous). So it could well be part and parcel of being T1, but I would definitely consider raising it with your GP/consultant next time you see them.

    I seem to remember you mentioning recently that you are feeling a bit 'burnt out' - could that be impacting things?
     
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  6. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Hi EllsKBells

    Definitely reached burn out but only because I am so frustrated with the tiredness!!
    My levels are fine and theres nothing underlying so its really difficult hearing others say it can't possibly be diabetes when Ive been told it is and honestly now I just feel worse!
     
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  7. noblehead

    noblehead Type 1 · Guru
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    Are you certain you have no underlying conditions @Lynz84

    If you've not been tested mention your tiredness to your gp or diabetes consultant and they'll request some blood test to check for the usual culprits, I don't think type 1 makes you tired in the way that you describe unless someones diabetes isn't controlled or they are really stressed about living with the condition.
     
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  8. Natt

    Natt Type 1 · Well-Known Member

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    Hi @Lynz84
    My son also complains about being tired and it kind of worries me.After an hour walk he says he needs to sit down.It has been 3 months since diagnosis.Control is good, he eats healthy so I am also suspecting that diabetes is causing it.another thing may be that his eating habits have changed a lot, much less carbs especially sugar, 3 regular meals with occasional snacks in between.Maybe lowering carbs also lowers energy levels?
     
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  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    Fatigue is also related to mood and stimulation...

    People with fibromyalgia and people with pain are now taught ACT therapy and this can also go along with all illnesses.

    Fatigue can be related to eating and sitting in front of TV instead of perhaps getting up from sitting and doing something. Even eating should always be done at a table to reduce fatigue, not on laps.

    I've had fatigue and diagnoses previously of fibro etc but I do believe in ACT therapy, mindfulness but also stimulating brains out of fatigue...
     
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  10. donnellysdogs

    donnellysdogs Type 1 · Master

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    Food can be a major factor too with fatigue...
     
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  11. rosedreams

    rosedreams Type 1 · Member

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    I've had T1 diabetes for 43 years since age 5, and I can honestly say ai have felt tired most of my life, despite intentionally living an active life. No matter what exercise regimen or activities I do, no matter how health-conscious I am (I have always been quite strict about diet and BG control), and even at my strictest level of control, I continually feel tired. Anyone with a cooperative, truly understanding doctor or medical team is very lucky, because I 've always had dismissive replies to my questions about unexplained tiredness, and i even paid for my own thyroid tests to find out if I had an under active thyroid to explain my tiredness, but that was normal. I've never let diabetes ruin or obstruct my life despite most medics treating T1 as some sort of death sentence, so I try to learn as much as I can myself, and I love this website for bringing real lives together to share info and advice. I like to quietly prove doctors wrong about how eventually diabetes will just dissolve me and I keep as healthy as I can but of course with the usual hiccups, there's no such thing as perfect control. But I've never cured or found a lasting remedy for this tiredness that's with me all the time. So I found ways of living with it, accepting it, not letting it depress me for too long, and working despite it. I work and have hobbies and I push myself to exercise no matter how tired i feel, because if I don't I end up feeling worse in my head, then physically. It's hard, it's a monumental challenge to control T1 and feel OK, but it is what it is and the first thing is to accept how we are, find what's best fir our own body to live as healthily as possible, and try to keep a level steady rythm of control, which is the hardest part. I used to wonder why, why, why am I so tired, and look for answers with or without a doctor's help, but I had to accept my tiredness because a thyroid test proved my thyroid was normal and no other test was really applicable. I think T1 takes a toll on the body in a way that has yet to be talked about as much as they tell you about what you should and shouldn't eat, what nice complications to look forward as the T1 gets older. And they say it matter of factly, as if it's all the same for absolutely everyone. Well, we're not all the same are we?
    Everyone in the medical field is busy talking about how To 'get your sugars under control' which is essential advice, but they have no concept of how hard it is to do that well, all the time, unless they've got T1 tthemselves. They never tell you to "expect to feel tired" or to gice yourself a mental break. A hypo cam knock you out and feel like you've been in a boxing match afterwards, for a whole day sometimes. But even as a strict eater, low carb, plenty of daily exercise, climbing, hiking, swimming, and steering clear of any abuse of food or alcohol, I am tired most of the time.
    It's something I have to accept and work against, it's an effort, but I have to carry on and do what I want to do without letting it take over my whole life. Diabetes is a big enough baby to manage 24/7 without the draining effects of wondering what the meaning of this tirdeness is without a concrete clue in sight. No doctor or specialist nurse has ever told me it's part of T1 unless after a hypo, so with all my blood tests showing I'm 'ok', no defficiencies etc., I say I have to accept it, I try to toss out the negative doom and gloom about T1 the medical profession has always dished out to me at clinics where, in this day and age, despite ever growing numbers of T1 diagnoses, it's still looked upon like a death sentence. I'm glad for those T1s who've got lovely doctors, my experience has always been of negative attitudes, restrictive advice about becoming limited and expecting grave complications as the books say. Well, we're not in a book, we are all different.
    Sorry I've written a short book, what am I like? Anyway, I just wanted to tell you you're not the only one feeling tired, I share your feelings, so you're not alone, although I'm sorry I have no explanation for the blasted tiredness.
    For the first time in my life I've heard another T1 talk about constant tiredness and not knowing why. Welcome to my world, here's a T1 who's exactly the same! I don't even tell people to go and talk to their doctor, that's never worked for me, even after changing doctors. I like to read and find out medical info for myself. I hope you're doing alright. Don't let it get you down , be your own best friend and pull yourself through the tirdeness with small aims, small activities, bright thoughts, and find the path that suits your own pace. Best wishes.
     
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  12. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Thank you from the bottom of my heart Rosedreams! Your words mean a great deal! Ive had all the blood tests and all ok. Ive been exercising, eating well and with good control aside from the hot weather bringing some hypos. I have done the Bertie course, my own research, taken supplements etc but to no avail. Its so frustrating but thank you for not making me feel like im the only one! My tiredness doesnt render me useless nor does it keep me from having a life but it is hard to keep positive somedays when you feel youve done everything you can and you still feel wore out.
    As Donnellysdogs rightly points out mental fatigue can have an affect and i completely agree and at times that can be an issue but for every other day there is simply no explanation.
    Thank you again for your words xx
     
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  13. donnellysdogs

    donnellysdogs Type 1 · Master

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    Beautifully written and expressed.... wish I could have put it that way....

    I noted that OP said no underlying causes so I took this to be that thyroid, B12 and full blood counts,D3 been tested....

    Good to hear that others feel so similar too and that acceptance has to come in to equation. Thats what ACT therapy teaches....
     
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  14. rosedreams

    rosedreams Type 1 · Member

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    You are very welcome Lynz84, your post made me feel I wasn't alone, seriously, for the first time in many years of T1, no one ever really took what I said about tiredness as something worth looking into. That's what's so good about this forum, helping people to feel constructive empathy because. Stay strong, I know how awful the mental effects of tiredness can are, and remind yourself that you do an amazing job controlling such a demanding condition.
    I must try not to write such long replies though ; yesterday was my first reply on here actually, I got carried away, but it has helped me .
     
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  15. rosedreams

    rosedreams Type 1 · Member

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    Hello Donnelysdogs, you've now got me onto looking up ACT therapy I love reading up on all sorts, thank you. I'm grateful to find this website, because regardless of how long I've had T1, I keep finding out things I never knew or considered before, and hearing Lynz48 and you, and many others on here, helps me.
     
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  16. rosedreams

    rosedreams Type 1 · Member

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    So sorry I meant Lynz84.
     
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  17. Lynz84

    Lynz84 Type 1 · Well-Known Member

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    Lol thats ok! Some days feel like a few years have been added lol x
     
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  18. donnellysdogs

    donnellysdogs Type 1 · Master

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    Lol... Pain management do a lot of ACT therapy now and so do Cancer therapy units...

    To be honest I thought initially that it was all the professionals saying that fatigue, pain isnt real... it isnt. Its accepting and finding ways around it...

    Ie if you know that putting out a full bin of rubbish causes pain... ask someone else to do it and explain that you can cope with a bin and put it in once empty".... not to give up, but to accept and adapt and commit to certain things.. just a simple thing there but basic explanation. Some people will push tgemselves, some wont put out or bring in. Some wont ask for help expecting partners to realise and just do things...

    Same with exercise... pain physio dont tell you how many to do of exercises if they coach ACT... they tell you to realise when pain starts and them stop before it starts.... but still trying to build up gradually and not give in. They wont tell you to do 10 as everybody has different levels of pain or fatigue.

    Then its carried through to neing mindful as well.

    I found it really good.

    Doesnt stop fatigue or pain but helps coping with it.,
     
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  19. rosedreams

    rosedreams Type 1 · Member

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    Spot on donnellysdogs! It's about acceptance, and once we accept certain things, especially ones we didn't choose but which are a part of our life, we can and will find ways to adapt, as you said, and learn ways to cope, live with and even overcome hurdles. I could write a book (but I won't ) about the lack of productive true-to-life guidance from the medical professionals who specialise in diabetes, to look more positively at the condition, as harrowing as it is in nature, and encourage diabetics to believe in really adapting to it almost as a way of life, life as a whole, affecting everything from whether we run for the bus and perhaps cause a hypo unwillinglingly to whether we worry too much, get stessed at work, or suffer a delay in a traffic jam without a supply of goodies to deal with a hypo. More focus on how embracing it as a part of us rather than as a cruel silent enemy.

    Diabetes is my life because from the minute I wake up to when I fall asleep my blood sugars, circulation, food intake and testing are part of how I live. But I have to help myself within my diabetes, by not beating myself up on top of how it already takes up my time and attention. I look at it as a permanent unwanted guest who's come to settle into my home. Of course I'd love to kick it out and make sure it never comes back, but that's wishful thinking, so my best bet is to calmly give myself a short time to accept its presence and figure out how best to handle it. That sounds simplistic, I know, but the point is if I want to enjoy life I can't let it ruin my world, hard as it is to constantly fight its testing of my mental and physical strength. If I enjoy being miserable and don't care for making the most of my time on earth I can let it eat away at me, literally. At times in my life I thought diabetes could turn me into a tired misery bag if I let it, especially if I was doing everything to stat on top of it and yet things just ran amock. I hated the idea of letting the negative general view of diabetes as a road to deterioration become my view so I consciously accepted it as that nuisance of an uninvited guest whom I'd welcome into My home and treat as best as I could for comfort and safety. Of course I'd want to scream at times and wish to God it would get out of my life but I told myself to take one day at a time and never give up, just never give up, no matter what, because thhis sod was there for life. Of course I didn't grow to love it, and I wouldn't wish it on anyone, but I saw myself coping, doing what I wanted, having choices that some people never got. I could control it if I wanted to, that was in my hands, because it's in my body, my home. Some people wish they could just walk, talk, be able to eat or go to the toilet independently. I was lucky. Of course I get depressed, dreary, even dip into a bit of self pity once in a while when things go wrong or even if they don't, but that's only human and life goes on, it has to.

    My biggesr gratitude to T1 is that from an early age it taught me how fragile and precious health is, and therefore how short life is. I knew from times spent in hospital wards as a kid that health wasn't a thing to take for granted. T1 taught me to appreciate feeling well and keeping life simple. It made me feel real empathy with people and made me learn to be strong and independent. My spells in hospital as a child woke me up and made me relish running in the school playground and finding hobbies I enjoyed. As I got older I didn't want to waste my life letting myself be run down by feeling run down, so I kept finding ways to cope with tiredness, to feel productive, and do what I wanted in life no matter how difficult it was to keep swimming against the waves of tiredness. I certainly haven't got it sussed, I have as many ups and downs as the next person, but if I believe in defeat and submission I have no one to blame but myself if my life topples around me, and that's the strength T1 taught me.

    I can tell you, I feel tired even when I enjoy myself. I live a full life but tiredness is a regular part of it, often, if not always., especially now that I'm older. I take it as part of each day, and like Lynz84 said, it doesn't make me useless or unable to do what I want. It sounds really cheesy but life is what you make it, but having a srlf-encouraging mindset is crucial in this tough world.

    Oh dear, I'm writing a book again here...never know when to stop, what am I like, eh? Before I go, just to say how happy I am to talk to you both Lynz84 and donnellysdogs about tiredness because years ago I felt that a few other T1s I met didn't want to allow the idea of tiredness to be associated with their condition as though it would make them sound less capable or reliable as people, which is silly....it's nothing to be ashamed of, it's a simple fact that diabetes weighs on every organ and cell in a diabetic's body and that tiredness would be a natural conseqence, to varying degrees in each individual, but it's to be expected. Of course there are many who don't get that tiredness, but, again, our bodies are all different. We live in a world where everything has to have a reason and when we don't find one we feel odd, or self-doubt, or let down even, as if we missed something the others seemed to grasp. Go easy on ourselves.

    I shall now put a sock in it and hope you'll forgive my long rabbiting.
     
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  20. donnellysdogs

    donnellysdogs Type 1 · Master

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    @rosedreams..

    You should write books!!

    Yep, when you wake up tired and exhausted it can be a struggle. However, agree totally on your wonderful wording of ways to get up basically and deal with it.

    Love your wording. Very encouraging to all. Thank you..
     
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