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explaining what it's really like to live with Type 1

Discussion in 'Type 1 Diabetes' started by himtoo, Jun 29, 2016.

  1. Juicyj

    Juicyj Type 1 · Moderator
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    Wow Snapsy - what an amazing read, I completely resonate with all of this. I feel like showing this to my consultant and DSN !!

    Having type 1 at times can make me feel so alone, I can't share the multitude of thoughts that go through my mind with anyone else, but you have pinpointed exactly all of it in this post. It is always walking a tightrope to me, i've become less social since diagnosis but to be honest it is too much effort that no one else understands. To me it's a 24 hour condition, I am always either monitoring/thinking or doing something connected to my type 1, if I wake up at night I immediately think am I high/low. I am still waiting for it to become second nature so maybe I can go back to being my old carefree self again, but somehow I don't think that will happen..

    It is also work in progress, constantly, each day tweaking and analysing, every event requires meticulous planning. I gave up my old sales job because the anxiety of having and worrying about hypos was too much and was wearing me out. I now have an easy desk job on alot less money, and of course less exercise but then I don't have to worry about the embarrassment of having a hypo in front of strangers in a meeting which had run over anymore.

    I do take better care of myself nowadays, less alcohol, more exercise, better food, but all of that is the combined result of wanting to get better BG levels and to stick around to a ripe old age to watch my gorgeous daughter grow up.
     
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  2. Snapsy

    Snapsy Type 1 · Well-Known Member

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    @Juicyj thank you - and I feel all of the things about my own diabetes that you've described above. And if you do want to show your DSN and consultant, please do. In fact it's already a teaching tool at my local diabetes centre *blush* so it's 'out there' and I'm happy to share.

    @AmandaD I too love sugar-free jelly! I make up a sachet of strawberry flavour every three days, divided into three yoghurt pots - the perfect pud. And yes, what a fab club we are.

    Can I just say a huge thank you for your responses to my essay on page 1 of this thread. It's lovely to feel so understood. That's why I wrote it in the first place, to make myself understand all of these feelings. I'm so glad it's helpful to others too.

    Oh, and there's a sequel to that first essay, but I'm not sure I should clog up this thread with it!

    ;):):happy:
     
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  3. himtoo

    himtoo Type 1 · Well-Known Member
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    on the contrary @Snapsy - I would think with it being a sequel this is the exact place it should be .

    you have put it so eloquently and heartfelt in your original reply that i was in tears as I was reading it
     
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  4. catherinecherub

    catherinecherub · Guest

    It has to be a sticky @himtoo as it is useful for all Type1s whether old hands or newly diagnosed.

    Now stuck.
     
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  5. Snapsy

    Snapsy Type 1 · Well-Known Member

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    I wrote the essay below in the middle of July last year - I'd had enough, and I really, really wanted a pump. Writing it all down got my thoughts in order, and I e-mailed it to my DSN, who I'd been seeing very frequently - every few weeks - together with my very supportive husband, as I had really been struggling with the psychological aspects of needing to be so very much in control. I'll just repeat that there is a happy ending to all this - I have a pump, I have a Libre, I HAVE A LIFE - well, I'm getting there.

    And if you're going to read the rest of this post of mine, just pop and put the kettle on first, because it's a long one.
    Thank you for listening.

    IMPORTANT CAVEAT: I haven't edited this since writing it. Please take the bit about the HbA1c with a pinch of salt. I do know how difficult it is for many of us, but this doesn't come across quite right in what I've written below. I mean no offence. Thank you.

    *************

    REFINING THE LINE

    I’m a spiky character, full of ups and downs.
    Sudden spikes of anger, rage, and inappropriate laughter sometimes.
    And corresponding downward spikes of lethargy and fug.
    Spikes have a huge impact on my life. At their worst they can stop me in my tracks – I’ve been known to ‘lose’ whole days at a time.

    I need to follow straight lines. Diabetes aside, every plan or idea or timetable or project presents itself to me as a straight line. My straight line needs to be straight. Be spontaneous? Conform to someone’s curveball, a last-minute change of plan? That would shatter my line – and that’s it, then – the end of the world.
    And that’s just my life life, not my diabetic life.

    Applying this straight-line mentality to my diabetic life is crippling.
    Every spike in the line representing my diabetes control corresponds to a spike in mood.
    An anger spike which perhaps results in another flight through the window for the nearest cushion.
    An angry wife for my new yet already long-suffering husband to contend with.
    So what about the straight line of our married life? The thought of ever coping with a family? Well, that spiky line isn’t ever going to lead there.
    It’s a shame.

    Many in my position as an ‘uncomplicated’ type 1 diabetes patient will, if articles in Balance – and, dare I say it, the Daily Mail – are anything to go by, ‘just get on with it’.
    They’ll run that marathon. Volunteer abroad. Row the Atlantic.
    These are feats that are impossible for me to achieve. I’m trapped.
    I’m stuck behind the tape at the marathon starting line.
    I’m behind the barrier at the airport gate, not able to board the plane.
    And my Atlantic-bound vessel has been scuttled.
    I’m not doing any of those things.

    I’d love some more options, an opportunity to improve my day-to-day living.
    A chance to despike, to smooth the curve.
    To refine the line, to nudge it just a little bit towards ‘normal’.

    I work so hard to maintain control. I’m on it. I’m there. I can do it, I do do it and I do it well. In fact, it’s incomprehensible to me why and how some people with diabetes can’t achieve an HbA1c result within the target range. I just don’t get it.

    Mind you, to do it the way I’m doing it is a full-time job. In fact, it’s a good thing my job job can be pushed aside, put on hold, paused, whenever it needs to be – which is often. That’s why I’m self-employed – a more formal job just isn’t feasible.

    A friend has struggled with her type 1 diabetes since she was diagnosed aged 7. Just couldn’t handle it. Didn’t have the support I’m so grateful to have had. Couldn’t do the work.
    Now she has a pump. I had a text from her recently with her HbA1c result. 5.8%. She couldn’t remember it every having been in single figures before. It’s fantastic.
    She had got into such a state (retinopathy, kidney problems, can’t feel her feet – and she’s only 38!) from not being able to achieve the kind of looking-after-yourself, the straightlininess, if you like, that I have.
    The kind of work – the diabetes maintenance – that is so very important to a pump user.

    I can do it. I can do the work. I’m sure I pretty much do do the work already.

    I just want to feel better, and in an attempt to achieve this I’ve been exercising a lot since the spring, trying to go swimming every day. I’ve spent as long as I can remember feeling unwell, uncertain, unsure and unhappy, and stepping up a gear and getting fit has become a priority, just to feel fitter and more healthy in general.

    But the anxiety of being in the pool is relentless. I have the ‘oh, I’m low, I need to get out’ and the ‘gosh, I can only manage 20 lengths – why has my body run out of power? Oh because I’m high’. I’ve only been going swimming for a couple of months – and it’s taken me pretty much that long to trust myself to actually survive the experience.

    I’m loving the swimming – getting up early, being at the gym soon after it opens, 30 (or more) lengths each time – it’s great. This is something I can do to make me just feel better. But it’s so difficult. I have to think about so much.

    There’s so much planning involved before I even get there.
    If I’m low first thing, it’s tricky.
    If I’m high first thing, it’s tricky.
    This is what’s involved:
    Half a bowl of porridge (20g CHO) before I go to the pool, two boiled eggs when I get back. 2u Novorapid with the porridge, 1u with the eggs.
    If I’m between 6 and 9 I’ll have the insulin straight away with the porridge.
    If I’m over 10 I’ll have the insulin first and wait 10 minutes before I eat.
    If I’m below 5 I’ll have some glucose, wait 10 minutes, have the porridge, wait 10 minutes, have the insulin, then set off for the pool.
    It’s exhausting working it all out.
    It takes me 12 lengths or so to get up steam. By length 18 I’ll either feel like a powerhouse and want to keep going for hours, or I’ll grind to a halt. There is no in between. If I do grind to a halt I’ll get out so as not to be a problem to anyone or put myself in danger. And then I’ll find I’m 4. Or 12. And that’ll be why I haven’t made the most of my swim.
    So I’ll feel hard done by.
    All of these negative feelings before 7am – it’s ironic that I’m doing this to feel better!
    And what about bedtime? If I’m swimming in the morning, is 5.5 a sensible number to sleep on? Do I need a banana? Shall I go back downstairs and make myself some toast?
    Or if I’m 13.5 before bed because I’ve underestimated the amount of CHO in the rice I’ve had for supper – perhaps I’ve had that naughty extra spoonful without paying it the attention it needed – do I correct? By one unit or two? One now, and then set an alarm to test again and have that other unit two hours later? Whichever way I do it, will I then be low in the morning? Or still high…..?
    ‘Normal’ enough to swim? Or ‘wrong’, so I’d better not?
    It’s so much work.
    To be able to lose some – just some – of the unending worry, would be amazing.

    I recently took part in a focus group organised by the University of Southampton as part of a research project into people’s attitude towards the artificial pancreas. There were 11 of us. Most of us didn’t know each other – I didn’t know anyone – but as the session progressed a feeling grew that I was different.
    That I was the only one.
    The only one with ‘BROKEN’ written across my forehead.
    None of the others looked like me.
    I wasn’t one of them.
    I was alone.
    They all just seemed so normal. Sorted. Settled.
    They were just living their lives.
    Just getting on with it.
    The general feeling in the room as a whole wasn’t a feeling of ‘broken’.
    They weren’t broken.
    Only I was broken. Just me.

    It actually only struck me later. I knew at the time that I wasn’t feeling comfortable, and it was only later that I twigged that everyone else there had an insulin pump. Some were also using continuous glucose monitors. All of this had come out in the course of the two-hour focus group.

    When I saw the film ‘Panic Room’ years ago I was envious of the ‘watch’ that Jodie Foster’s diabetic daughter was wearing, which told her what her glucose level was. ‘Only in America’, I thought. Or perhaps only in films? Maybe this was just a prop, an invention, artistic licence for the sake of the storyline.
    Wouldn’t such a machine be amazing if it existed in real life?
    But it does. If I had a CGM I know I’d still need to do lots of fingerprick tests for accurate up-to-the-minute blood glucose levels, but to also have an idea of the trend in my body on a continuous basis would be fantastic.
    Which direction is the line sloping? This knowledge alone would be life-changing. It would be great to add this tool to my armoury, and I’m planning to do so.

    I’d love to make my spikes less spiky.
    To monitor my condition and administer insulin more intuitively so as to give me more options in my day-to-day living.
    To refine the line so as to improve my quality of life.

    I have constant, consistent, no-light-at-the-end-of-the-tunnel anxiety about not being in control.
    I am afraid to go high. Historically, I’ve always rather been low than high, but really, wouldn’t it be nice to be on a gentle, smooth trajectory?
    High is wrong. High is my fault. It shows that I’ve done the maths wrong. If I’m 13.8, that’s it. My line is off whack. It’s the end of the world.

    Insulin pump therapy is the most natural form of insulin treatment available today, and I would like my diabetes healthcare team to consider me for it.
    I don’t ask this question lightly. There will be a lot of work involved, not just at the start but on a daily basis for the future. And I know that pumps are not actually in fact made out of get-the-right-answer-all-the-time magic.

    I have my eyes open. Problems with pumps, I gather, can and do manifest themselves swiftly and frighteningly. An occlusion in the tubing, a wonkily-inserted infusion set, a kink, could quickly result in a 30+ blood glucose level.
    Now, that’s not good – of course it’s not.
    But a kink, some kind of pump anomaly, could be attributed to the pump rather than to a mistake, a wrongness on my part. This fact in itself would have a dramatic effect on how I’m feeling.
    You see, however crazy it seems, a pump-caused blood glucose level of 33 would be to me way less unappealing than a self-inflicted ‘done-something-wrong’ blood glucose level of 13.
    Imagine the relief of being able to relinquish some of the responsibility to a machine?
    To still be responsible, of course, to still do the work – more, even, than I do now – but with the confidence that I am moving towards a refined line. To pass some of the ‘under-the-thumb’ mentality on to a machine. And to feel better – not just physically, but heck, more importantly, psychologically.

    A pump is not a magic bullet.
    It will be a great deal of work.
    But it will surely do something to ease the knot in my chest which presses me harder into the corner, to lessen the neverending feeling of ‘trapped’ associated with having to cope with achieving such tightly-controlled diabetes by hand.

    I do the best I can with the resources available.
    I try so hard to be in control.
    Not being in control profoundly affects my state of mind.
    My best, with the resources I have, does not feel good enough.
    It’s the resources need upgrading.
    An upgrade, to help to refine the line.

    Insulin pump therapy is not a miracle cure. I know that.
    But the psychological benefits – even moderate ones – of not feeling so trapped, so broken – would have a profoundly positive effect on my daily life.

    *************

    Love Snapsy xxx
     
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  6. himtoo

    himtoo Type 1 · Well-Known Member
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    @Snapsy
    your 2 posts added together are the most complete definition of what it is like to be diabetic and to strive for the perfect we all know doesn't exist yet we continue to strive for it.......................
    thank you ever so much for your contributions
    they are what this forum is all about..........helping others :)
     
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  7. Snapsy

    Snapsy Type 1 · Well-Known Member

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    You're so kind, @himtoo

    Thank you for listening.

    :happy:
     
  8. Tanny35

    Tanny35 Type 1 · Well-Known Member

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    Couldn't agree more @himtoo is one of the kindest, caring, helpful and thoughtful person I've met through this forum!


    Sent from my iPhone using DCUK Forum mobile app
     
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  9. therower

    therower Type 1 · Well-Known Member

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    Hi snapsy, thank you for what you've managed to put into words, I could never have managed to get what diabetes is all about so perfectly. You've managed to cover it all brilliantly. The title of the thread is what's it really like living with type 1 diabetes? Well personally I don't live with type 1 diabetes. Type 1 diabetes lives with me. I've not been lumbered with it, it's been lumbered with me. I have total respect for it's deadly abilities but it has to respect my desire to live and be happy and die on my terms. It has it's days when it sends me high it has moments when it sneak's up and sends me low, but after 25yrs I'm still just diabetic no other issues problems. Yes I've been lucky so far and my heart bleeds for those who haven't had any luck. Having diabetes has made me a different person, more compassionate, more understanding, more stubborn and stronger both mentally and physically. I could go on longer but I would just keep repeating myself. I workout quite a lot and when I'm at my limit, when I'm halfway up on the last rep and I can't find that final push, I tell myself I'm type 1 at that point the weights only going one way and it's not down. I would dearly love not to be type 1 but there's worse. I am type 1 . I am the boss. We play by my rules. I'm no saint if I want chocolate i have it. I don't low carb tried it but wasn't for me. Looking forward to hearing how the rest of you guys and gals manage
     
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  10. TJR56

    TJR56 Type 1 · Well-Known Member

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    *
    It is always work in progress, and yes it needs vigilance , which can be a bore. But you have a reason, and so do I. So we do it, and smile, mostly!
     
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  11. Rachette

    Rachette Type 1 · Well-Known Member

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    @Snapsy Thank you sooo much for taking the time to post.
    You will never know how much you have helped me in doing this.
    I have spent the last year trying to find the words to explain to my family how I feel about being diabetic and you have explained it as if I wrote it all myself.
    It has enabled me to open up a dialogue with my husband today that has been long overdue and I really feel he 'gets it' now,
    Thank you simply doesn't cover it. :)
     
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  12. TJR56

    TJR56 Type 1 · Well-Known Member

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    Snapsy, I'm there with you. It's a constant concern, constant, constant and unremitting. I'm sixty last birthday (unbelievable!) and still playing a game (after 57.5 years) where, even though I know the rules, I don't seem to have the right cards to play. I admire your candour and honesty and yes, it's good to share. I enjoy what you write.- do you blog?
     
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  13. tim2000s

    tim2000s Type 1 · Expert
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    @Snapsy, thank you for posting that. It just hammers home how much the person you are affects the diabetes you have.

    I know that I approach diabetes very differently from many and it is insightful to learn how it takes over some people's lives.

    Thank you for posting your two pieces.


    Sent from my iPhone using Tapatalk
     
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  14. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Hi @TJR56 - thank you so much - no I don't blog, but I do find that writing stuff down can sometimes help to get my thoughts in order. I love your card-playing analogy - that's absolutely right!

    Thanks @tim2000s - what's so brilliant about this forum is the fact that there are so, so many different experiences out there - and it's great to have access to loads of stories so as to be able to see every side of what might be experiences - or potential experiences - of our own.

    :)
     
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  15. richyb

    richyb Type 1 · Well-Known Member

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    thanks for your reply. luckily the consultant is changing soon, so hope i will get a good one next time.
     
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    #55 richyb, Jul 2, 2016 at 11:54 AM
    Last edited by a moderator: Jul 2, 2016
  16. Snapsy

    Snapsy Type 1 · Well-Known Member

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  17. himtoo

    himtoo Type 1 · Well-Known Member
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    sorry for blatantly bumping this thread :D but sometimes they need a bump to keep them "visible"

    I am so grateful to everyone that has replied so far.
     
  18. donnellysdogs

    donnellysdogs Type 1 · Master

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    Like above from Robinredbreast.. Stepping off the world has seemed an option to me at times in this past year.
    My grace of God has been my cancer therapist centre. Not nurses and consultants. I so wish there was something for diabetics....especially newly diagnosed or people struggling to come to terms with T1. To include parents.
    I know there are the local diabetic groups running but the Robert Horwell Centre I go to has something so different about it and I can't say exactly what it is.. It maybe the occupational therapy craft and art classes or the relaxation classes or the "moving forward" courses or the "hope" courses or the one to one sessions they give. I know that after the **** op and poisoning that I went thru and having to get 2nd opinions I struggled. Just as T1's do at times. My centre is changing as well now to a drop in centre for coffees as well.
    I just wish there was something more specific for T1's as children and adults. Yes, C can be so hard to live with and can reoccur and can be a final exit but T1's also go through a lot of emotional feelings and difficulties. The patients as well at my centre form great friendships and don't feel as if they are alone. I have only ever met in person in 30+ years two other T1's...

    Thats why I think that this expanding online community is wonderful but to have the same facilities for T1's or T2's or any diabetics would (in my opinion) achieve savings for the NHS. My centre is NHS funded. It is vastly different to the local meetup groups with visits from local consultants etc that lecture more than listen at these groups etc. Our centre concentrates on the whole persons wellbeing and no consultants or the nurses from the Cancer Unit in sight.
     
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  19. donnellysdogs

    donnellysdogs Type 1 · Master

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    One thing I have realised about what its like to be T1 since having my C therapy are some positives:
    I know the ins and outs of my body like no one else;
    I have more empathy to others;
    I know nutrition;
    I can help others to try and educate themselves about the need to research and help themselves;
    Having had good and bad times I know how others feel;
    I have a wonderful husband;
    I have made wonderful friends;
    There's worse things than diabetes;
    The NHS is really in its infancy with mass Pharma and we are really the first real guinea pigs for them and not to be afraid to question treatment;
    Do your best, thats all we can do;
    We have a better idea whats going on in our bodies because we can test and adjust our diet individually-we do not have to rely upon Medics to slice, dice and burn or chemically change us to survive diabetes.

    Positives can be found. Although at times its **** hard.
     
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  20. himtoo

    himtoo Type 1 · Well-Known Member
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    thanks @donnellysdogs
    your post is exactly what I think as well -- C gets a lot of press and support for terminal conditions ( rightly so ) but D gets nothing in ongoing "living with a chronic illness" that has the potential to shorten our lives.
    a well spoken comment !!
     
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