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Feeling Ill & at the end of my tether!

Discussion in 'Type 1 Diabetes' started by Rubyloo, Aug 7, 2013.

  1. Rubyloo

    Rubyloo Type 1 · Member

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    Morning All, I am Type 1 49 yr Old diagnosed 8yrs ago! Since diagnosis & several months prior my life has been totally disrupted due to feeling totally rubish I take Novorapid & Levemir & inject 4-5 times a day. I am extremly Insulin sensitive so suffer many hypos both day & night in my sleep! I spend my days feeling like I have a massive Hangover, I dont have good days I just have less worse days! I don't plan anything anymore for fear of disrupting my family/friends as I feel so ill all the time! I have not worked & feel that I could not work when I feel so ill (Prior to diagnosis worked full time from the age of 16 to 31 & part time when I had my kids). I am convinced I am having severe Hypos in my sleep! I do sometimes wake up but think I am sleeping through them! My Dr's surgery has NEVER called mefor any kind of checkups (My Dad is type 2 & is seen every 6months) I seethe hospital every year but due to cut backs the yearly MOT I used to get is no longer avaiable! I have tried to explain my struggle to the Dr's who sit looking at me like I'm speaking Alien then tell me they will see me next year I have asked for help from my local DSN who is diabetic herself, who was no help at all infact wrote to my consultant telling him I was on a different Insulin & regime altogether! Am I the only one who feels like this? I am at the end of my tether! I try so hard but get nowhere
     
  2. amberzak

    amberzak Type 1 · Well-Known Member

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    Re: Feeling Ill & at the end of my tether!

    I know exactly how you feel. I'm lucky in that a new diabetic nurse started who is now seeing me (as of 2 weeks ago). But I've been in such a state before this, going from a reading of 0.9 to a reading of 30 in one day was normal for me.

    Have you done the DAFNY course? I haven't but I've heard it's good. It teaches carb counting.

    You have every right to be frustrated. You need to get yourself a decent nurse. Keep bugging the doctors until they help you.


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  3. noblehead

    noblehead Type 1 · Guru
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    Understandable your at the end of your tether Rubyloo :(

    You shouldn't feel ill all the time and suffer from constant hypo's, you need to ask your gp to refer you to be seen by the hospital Endocrinologist who will hopefully suggest fitting you with a CGM to monitor your everyday control, if...as you say your found to be extremely insulin sensitive then they might suggest you move over to pump therapy where smaller doses of insulin can be administered.

    As for your 'MOT' no longer being available, they cannot do this and you have a right to an annual diabetes check so you need to address this issue, first port of call should be your gp and failing this then write to your PCT, if you still get no joy then contact Diabetes UK.
     
  4. Rubyloo

    Rubyloo Type 1 · Member

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    Thanks for your repies,

    I am seeing my Consultant (or one of his Trainees!!!) next Friday! I was going to enquire about CGM as I had read about it online & feel this maybe a good idea! I believe a DGM has an alarm so would wake me up if I was to go Hypo in the night! Doew anyone know where I can find out what Diabetic care my Doctors should be offering? As I said,at the moment its nothing!
    I have compleated a DAPHNE course & foundit very helpful. I carb count so am very careful! I just dont understand why I feelso unwell all the time! I'm convinced its night Hypos that I am sleeping through! Feeling like I have the Mother of all hangovers every day is ruining my life :(
     
  5. noblehead

    noblehead Type 1 · Guru
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  6. Gizmo123

    Gizmo123 · Member

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    Re: Feeling Ill & at the end of my tether!

    As far as i know to have a CGM you also need an insulin pump as they work together, im not sure a CGM would work on its own. I would ask about getting put on a pump as I had the same issues and my pump has changed my life. It is really hard to get funding for a CGM in the uk unfortunately but you may be lucky. In the meantime you could try setting your alarm every 2 hours through the night so you can check you bg and get an idea of what is going on. Even if you did it twice a week you may be able to see a pattern.


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  7. noblehead

    noblehead Type 1 · Guru
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    You can use a CGM on MDI, I should know I was offered one to try around 5 years ago.
     
  8. ivinghoe

    ivinghoe Type 1 · Well-Known Member

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    Hello Ruby
    I'm 49 and have been T1 for about 36 years. I`m on a MDI regime like you but use lantus as I became allergic to levemir.
    You should be seeing a diabetes specialist every 6 months or so. Your hba1c should also be checked at least twice a year too.
    See your GP and ask him to be reffered to your local hospital clinic asap.
    I self fund a cgm now (I was loaned a medtronic guardian but I decided to hand it in and buy my own Dexcom G4)
    It is quite expensive but I've found mine really helpful.

    I dont know if you have read "Think Like a Pancreas" by Gary Scheiner but if you havent I would suggest you do as it will help you understand your control problems and how to solve them...plus you`ll probably end up being better informed than your gp in regards to your own diabetes.

    If you suspect you're having hypos then the best thing you can do is test through the night and see whats happening. Its tough to do but well worth the effort. I was feeling exactly the same as you, totally exhausted and running on empty day in day out.
    I read a few posts on here about how to test my basal doses properly and read the book above. I feel way better now.. not 100% but a lot better. A lot of hypos and apparently random ones at that seem to be caused by too high a basal rate so in my case I would make sure its right by doing some proper tests through a couple of different nights.
    I thought my doctors and nurses knew best... but they dont.. they dont live your life and can only advise you on whatever data you can provide them.
    In my case I found my team could only help me if I made sure I kept a proper hand written daily diary, imho meter data is useless without it. So if you do get to see a DSN make sure you bring as much info as you can.. the more you bring the better the advice they will be able to give you.
    Alan
     
  9. Juicyj

    Juicyj Type 1 · Moderator
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    Hello Rubyloo,

    Sorry to hear you are feeling like this, it's easy to understand why with the care (or lack of) that you have and some very good advice given here.

    I've only been T1 a year but struggled mentally with handling it and have seen a doctor 3-4 times now (each time a different one) to find out about how I can deal mentally with this, to be honest they have all sat there and nodded and not done anything, which has left me feeling even more down, but I would go so far as to say that i've felt that each time i've really had to explain type 1 to them and what it means to me and that's really what you have to do, at my last visit the doctor did help but only after a long discussion which stated with him looking at me as if I didnt have a clue (however thinking about it afterwards - I dont think he could really fully understand the condition and how it was affecting me). Write down a list of everything that you are struggling with and dont leave empty handed - make sure you speak about each point, if it's written down you wont forget anything. Physically I am ok with type 1, but mentally I find it so draining and i've just also been on DAFNE which was great for training you to look after yourself but not how to mentally adapt to the condition - to be fair I dont think it matters how long you've had it, problems can manifest themselves over time and if not dealt with it can have a pressure cooker effect, so please go and blow your steam at the NHS - they score points on managing their diabetes patients, so it's in their interest too in regards to funding that you are well and looking after yourself.

    Think like a pancreas is a great book and so is Dr Bernsteins book - unfortunately with this condition you have to manage it - no one else can do it, so the more of an expert you become the better, study the condition and it will help you gain confidence in knowing more - also each trust has a set number of CGMs so your DSN will be able to allocate one to you - keep on at them for this.

    Good luck and keep posting on here, helps to talk :thumbup:
     
  10. Jgos

    Jgos Type 1 · Member

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    Hi there - I am using the Navigator (Abbott) CGM and the Omnipod pump. They work really well together. I started with the CGM about 4/5 yrs ago - I took the decision that I wasn't going to get this from the NHS so took the leap and did it myself. It was the best thing I have done. I can do all the ah hoc things we all worry about. The alarms are brilliant and give you a prod when I start to trend towards a hypo or hyper, you set the parameters yourself. I then applied for the Omnipod and it has closed the loop. I can reduce my basal for a given time - so if I am off cycling or swimming, I cut back by a percentage for 30 mins prior and then time it to come back up when I stop. They are great - I just wish they could talk to eachother !!
     
  11. jackiemac

    jackiemac · Newbie

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    I know exactly how you fee and I am sorry to hear this is how you feel. I was diagnosed just under a year a go. I kept being told I was doing really well but my glucose levels were running low most of the time and like you I could not plan anything. I went on a DAFNE course in June and my quality of life has greatly improved. I feel now that the diabetes or( insulin) do not rule my life and one simple change they made was to my background insulin. Prior to the course my G.P. knocked my lantus down to 6 units daily now I take 3!!!! (DAFNE suggested 2 but I feel happier on 3) the trainers on the course also give my as much support as I want.
    Hope things work out for you soon. p.s I get a lot of support from my local surgery if I need it but the guys on DAFNE are the real experts and as we were told we more than likely have had more education than our practice nurses or G.P.s
     
  12. Rubyloo

    Rubyloo Type 1 · Member

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    Thanks again for all your input!
    Some of you look as if you are so much more educated with regard to your Diabetes than me! I think its because I have been totally abandond by the NHS. I have never one been called into my surgery once! I havedone the DAPHNE course which was the most helpful thing since being diagnosed! I think the main problem is my Sensitivity to Insulin! I use a baby pen with half measures/units and sometimes the one unit of Novorapid can make the difference between Hypo & Hyper! I think maybe a pump could be the answer but I knoww its hard to get one!
     
  13. Marfmama

    Marfmama · Well-Known Member

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    Re: Feeling Ill & at the end of my tether!

    Hi rubyloo, I'm sensitive to insulin too and find it really frustrating, I have asked to go on a course but my surgery is like yours, I have to book myself in and when I get there they act like 'well.. Why have you come?!' I'll take 4 units before a sandwich and be fine, then take 5 before a huge meal and have a big hypo. I played squash one night and the next day I had about 5 hypos an just couldn't stabilise myself. It's hard because people around you just think its a case of you can't eat chocolate or whatever! I feel very similar to how you have described and it's affecting my work - the advice we have been given by the good people of this forum is right though, this is our condition and there is no quick and easy solution, we need to educate ourselves, test regularly and work out our doses and how foods affect us. I have personally been caught in a vicious cycle that I need to break - I feel **** so I don't have the energy to look after myself, which makes me feel worse. Sorry this message is probably not of any use to you haha, at least it helps knowing we are not in it alone!!


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  14. ElyDave

    ElyDave Type 1 · Well-Known Member

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    Hi Rubyloo, Marfmama,

    when you say you're sensitive to insulin what do you mean, how sensitive? Most of the time I'm taking one unit of novorapid for about 20 g carbs, and I find myself thinking whether to take two units when I know it might send me low, or just one when I know that might leave me higher than I'd like. When I've had a very active week or just done some exercise it can be even more sensitive. After a full day of running, then next day I was taking one unit for 40-50g carbs.

    I had a great disucssion with one of the DSNs at Addenbrookes and they are going to send a requerst to my surgery for the half unit pens for me.

    I've got my DAFNE course in December, really looking forward to it, especially as Addenbrookes is known as being pump friendly.
     
  15. hale710

    hale710 Type 1 · Well-Known Member

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    Re: Feeling Ill & at the end of my tether!

    Half unit pens have been my saviour. I take a half unit for 8g in the morning or 10g in the evening

    I'm insulin sensitive also, so if I need a correction dose I only take 0.5 unit for e every 3mmol/l I need to come down by. Many people would take a whole unit but this results in a hypo for me
     
  16. Rubyloo

    Rubyloo Type 1 · Member

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    I think you should go on a DAPHNE course! It is really helpful! Sorry you hear that you struggle too but its helpful to read that I am not alone! I used to get the Diabetes UK Mag Balance but cancelled as it made me so depressed reading all the Happy Storys about how Diabetes had made their life better! Utter rubbish! Type 1 Diabetes can no way make things better....after 8 years I'm sure about that! Lol...

    Dx
     
  17. jackiemac

    jackiemac · Newbie

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    I too am insulin sensitive and use 1/2 units as well. Have been told that's healthy and still wonder if your basal insulin needs reducing. My surgery is pretty good but my nurse will tell me when I need to book next lot of bloods which I arrange myself and then I book an appointment with my nurse for a review. Did have to push to be seen for eye checks though but then again I contact the department myself. My issue at present is that I want to use an Acu-Chek mobile system but my surgery say I cannot have it however my Dafne educators have got the consultant at the hospital to write to my G.P. complaining so next week I will try and request and we wilhttp://www.diabetes.co.uk/diabetes-forum/posting.php?mode=reply&f=19&t=45662#l see what happens. I take 3 lantus at night and 1/2 insulin to carbs and then I usually take an extra 1/2 unit of that.

    :thumbup:
     
  18. Marfmama

    Marfmama · Well-Known Member

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    Re: Feeling Ill & at the end of my tether!

    Would love to go on the course - I asked my nurse and she said she didn't think I needed, but this was without actually knowing anything about me as it was my first appointment with her (having moved from Liverpool in December) and she couldn't do my hba1c as they have a contract with the hospital for blood tests - basically she took my blood pressure and weight, told me to go to the hospital to get blood taken and she would call me if there were any issues to discuss with my blood results. This was about 2 months ago now? She said the nearest course is in Scunthorpe, which is about a 40 minute drive away (I can't drive) or there's a bus which takes an hour. I really want to do the course so intend to do some research to see if I can find one that is easier to travel to .. I am so gutted as I had so much support from a whole team in Liverpool, I lived 5 minutes from a large hospital which had its own diabetes centre and I saw a consultant, nurse and dietician every 6 months like clockwork. They were keen to get me on a course but moving disrupted that. I feel like I'm just blindly guessin when I look at my meal an decide how much insulin to take! I have bought how to think like a pancreas and am just going to power on with trying to teach myself. My mum is a nurse and actually worked as a diabetic nurse but quite a few years ago and she tries to help but can't always remember exactly what to do for the best. I read that high sugars affect your brain and this is so true for me, I am a teacher and really struggling to plan lessons and be motivated, I am agency at the momen but have applied for permanent posts for September so that is my motivation to really get myself focused and on track !!!


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