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My diabetes sucks

R

Rach79

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OK you're probably thinking how negative I am and how diet and exercise can cure all possible future complications. Well yes I am negative because I feel I'm doomed forever that's why. When I was 13 I was lethargic and skinny and tired all the time - my whole school life I kept blacking out and becoming ill during sport and I was bullied by both teachers and students because of this. I failed all my subjects due to the fact I couldn't concentrate. I kept going back and forth to the doctor begging him to tell me what was wrong with me. Eventually (at the age of 17 nearly going in sane crying at night and contemplating suicide) I went back and screamed at him to tell me what was wrong as I felt I was dying. I was very angry as he kept ignoring me. He shrugged his shoulders and said "it could be one of three things, either anemia, diabetes or thyroid" I thought at last - I can be diagnosed and treated to stop me feeling extremely lethargic and ill all the time!!!! Then the next minute I know I'm being rushed to hospital as my sugars were 37.6 mmol. I was placed on a drip for immediate re-hydration and spent two weeks lying in a hospital bed. I was re-taking my GCSE maths at the time and they didn't allow me to increase my time for coursework - despite the fact I wasn't allowed to leave the hospital... they wouldn't allow me. I felt cursed. Then the nurses gave me insulin and no food so I had a massive hypo.. but as I wasn't educated at the time I thought I was 'allergic' to insulin as I didn't have a clue what diabetes was. They say I was 'lucky' to be alive despite feeling sweaty, sick, shaking violently and scared to death. Then my eyesight went blurred but I was told it was the insulin working and that it would soon go back to normal. I also put on weight and worried that I was going to be fat and blind. Although when I had first arrived at the hospital I was informed I was 'lucky' because I didn't go into a coma or blind and my sugars had been extremely dangerous for a while. I didn't feel lucky then and I don't now. My 10 years have been a constant battle for me. I've strived to exercise, cut out sugar and had gone on many nights not drinking yet still I couldn't and still can't find a way to control to my glucose levels. I am becoming very depressed and feeling more and more isolated each day. A while ago I went through two faulty glucose meters in a row, leading me to have hallucinations, feeling extremely sick, having spasmatic attacks in the street which left me feeling humiliated, vunverable and very scared. I was also crying uncontrollably at work with severe hypos. Everyone was running round trying to feed me glucose powder and eventually, inevitably it took it's toll on my professional life and I lost my job.. them telling me I wasn't any good. Yet I have RSA's in typing and nearly 10 years of office experience plus excellent references but diabetes has taken control over all of this. I have lost my confidence, my ability to do anything I wanted (scuba diving, air hostess etc). I have almost died too and my boyfriend who was very scared and crying for me called an ambulance for me.. as I had lost conscienceness. They said again I was 'lucky' but then afterward I was told by others that I could have suffered brain damage as the paramedics said my sugars were as close to zero as one could get without dying. Also my friends always remind me of how I could go blind one day... despite the fact I really try to look after myself. They say they mean well but it doesn't help. I am so down and scared right now. Also I think I'm losing feeling in my hypos which means I'm doomed forever. I used to feel low at 4 mmol and now it's 3 mmol but it could be because my insulin has changed... I just don't know. I went to discuss my concerns with the diabetic clinic and the doctor mumbled to a nurse that he was fed up and was ignoring me, they constantly tell me I'm on the wrong insulin and have incorrect details. Also, when I had voiced my concerns about constant hypos after exercise and asked for help, the nurse left the room to answer her mobile and proceeded to chat on her mobile to her friend about meeting for lunch. Now you can't tell me to be positive about my diabetes .. I just can't and I don't know where else to turn!! :(
 
I felt sad and angry at reading your posting.Angry that you have had to endure such treatment by the medical profession and sad because I can't ake away all your worry for you.
All I can do is assure you that if you stay with us on this forum, you will get no end of support and understanding.As diabetics ourselves, we know how frustrating everything can be at times and feeling down is something many of us have felt over the years.
I have to go out in a minute but please don't feel alone in dealing with your diabetes.I'm sure someone else will be along in a minute and will give you some friendly, supportive advice. Meanwhile I'm sending you a virtual hug.
All the best, chocoholic.
 
Oh you poor love. Dealing with that lot has already shown you have a tremendous spirit so don't be hard on yourself. I won't tell you to be positive about it because that wouldn't do you any good. What I will tell you is that I have had a rough couple of years with many problems related and unrelated to diabetes. It may seem like you are never going to get there but you do eventually start to see the light at the end of the tunnel. Keep posting here - there are some lovely, compassionate people who will give you the support you need. We all have bad times but what I have seen during my short time on the forum is that there are always people to help you through the dark days. Lean on them - one day you will be doing the same for someone else. We all need a shoulder to lean on sometimes - here you will get hundreds.

Jackie
 
Hi Rach
I'm sorry to hear how bad things have been for you but just think that to overcome all of this and still stand tall, even if sometimes unsteady, you are an incredibly strong person. Stay with the forum and no matter how many times you feel unstaedy and at whatever time of the night/day there is always someone here to support you and help you find balance again!
 
Hi Rach and welcome.
I'm absolutely furious about the lack of help your diabetic team have given you.
I also wanted to say how bl**dy determined you sound! You have gone through all of that and I can hear the guts in your posting.

I'm T2, no insulin and can't offer any advice on your control, but if you would like to offer us some info on a typical days diet, meds etc, there are those on the forum who may be able to shed some light on whats happening to you. There are some wizard and exceedingly clever folk here.

wiflib
 
Wow guys thanks, I've never had so much support :!: My diabetes clinic is terrible. I've tried to give them the benefit of the doubt so many times like in the past when a diabetes doctor told me I was too skinny and he preferred fat women and he was going to refer me to my GP - that was a shocker for me. I had to complain about that because it upset me so much. The reason I was skinny was because my body had literally eaten away at itself... and why would I want to know what women he preferred :?: :!: I also complained about the nurse on the mobile because it upset me a lot too but they covered themselves by saying she was on an urgent phone call to a patient, which isn't true because the diabetic clinic have an emergency patient procedure (it involves ringing your doctor not them) and you can never get through by phone. She waited for a few rings and left talking about meeting for lunch, if that is urgent then well I guess getting the paramedics out for me because I had lost conscience doesn't come into the equation, and neither does exercising in diabetes without hypos :!: My sister also makes me feel bad when I inject in restaurants she tells me to go to the public toilet and do it because she doesn't want embarresment caused infront of her friends. So I dislike eating out with her now, my mum used to be the same but I guess now she's more understanding. I don't see why I should go to a dirty restaurant toilet full of urine and other germs to inject myself with something to keep me alive. I think people don't have to look and I often ask if people mind if I can't do this discretely but my sister says it is not right that I do this. I have to say I'm pleased I have got some support here. I do often try and see things from a positive respective, but with little people to talk to professionally and increasing problems with this condition, I find it increasingly difficult :|
 
That's an unbelievably sad story, and I'm shocked at the treatment you're receiving.

What I will say, and I hope you can let this in, you can turn this around. You have all the power within yourself to control this thing, there is no need for you to be victimised by it.

If the health pro's aren't helping, then they're part of the problem.

As the others have said, stick on here, build your understanding and you will get a grip on it.

Diabetes is an incredibly complicated thing looking at it from the outside, but in reality there are a number of simple things you can do that will change your life.

Any and all of us will be willing to help and advise as much as we possibly can - I can tell you from my own personal experience that this forum saved my life. I was lucky and found it within days of being diagnosed, but it is not too late for you to master it.
 
I often have bad days or weeks but sometimes good too. I tell myself "c'mon Rach get a grip of yourself, you can do this, you can lead a normal life" other days, well they are like today and yesterday I guess :| I have tried not to live in the past but it's difficult, especially when I know my diabetes was undetected for some time, therefore it has already affected me in the present. I've been told it could have already damaged the microvascular vessels too, which upsets me. Also I want to have a baby one day but my glucose levels have to be really good to have one otherwise complications set in with that too.

I appreciate all your replies btw - I actually thought you were going to come back and say "please get a grip and move on" - I didn't expect the answers I got so thanks, that alone has helped me feel a bit better. I'm on Novarapid (day) and Lantus (night) btw. I was on Levimir but this didn't suit me hence the crazy hypos but that could have been the faulty glucose meters too. They were saying my mmol was 19 when it was actually around 7 or something which is what proved fatal that time when the ambulance came. I guess it's little steps at a time but yeah the diabetic clinic doesn't really help me atall. They just provide the minimal care needed, i.e. weigh me and provide annual eye tests but apart from that I don't really need them anymore. I can't talk about any issues with them, I always feel uncomfortable and they digress from the subject all the time. I've been diagnosed with lypodystrophy too and recently tendonitis, all to do with diabetes or because I'm diabetic I'm prone to the tendonitis. I don't know how much insulin I'm injecting sometimes and it leaks out. From the web I've found rotating the sites helps and changing needles a lot and it's slowly getting better but the diabetic clinic said there's nothing I can do apart from live with it. I don't need them anymore atall in my life. I do need to take control of diabetes but I really am lost with all of this. I've had higher glucose levels for years for fear of hypos and becoming ill but I'm slowly bringing my Hb1Ac to around 6mmol or 7mmol (it's 9.9 mmol at the moment but was around 11mmol). I exercise and take lucozade with me but I don't know what is worse - is it being too high or being too low that causes long term damage... I just don't know. I don't know about carb count at all. I learnt 10 years ago that certain grams of food affect my sugar levels a certain level but that is all I know. Sometimes it's extremely difficult to gauge. I also had antibiotics for a chest infection not so long ago and had to increase my insulin three times as much because my sugars were 25mmol or higher. The doctor informed me he was sorry I had been prescribed the wrong ones. So I've got another chest infection but I'm dealing with it myself... like I have to with everything... although I hold some hope in this site.... I think it might help me a little bit :!: I'll hold on... and stay here.. thanks :!:
 
sorry to hear you've been having a rough time, if you are unhappy with your hospital clinic then you can change, you have the choice where you are seen. I'm not seen at my local clinic because i choose to be seen elsewhere.

have you been on a DAFNE or similar course? that may help you, it will teach you to match your insulin to the amount of carbohydrate in your meals (thats if you are not carb counting already).

I'm with you this week though that diabetes sucks, i've had a horrible A&E low and now i'm high it's all very frustrating.
 
I haven't heard of DAFNE at all. It is a course? How would I enrol on it as I'm quite interested? Also how would I go about changing my clinic. Would I just go in and ask? Sounds silly but I really don't know about this. The local clinic hasn't ever offered such a course to me.
 
Yes Diabetes does suck! I was type one since I was eleven and have raised two type one sons from babies, yes I know it sucks, but the last thing you want is sympathy.This is not going to go away, it's time to be strong, get more education from your professional body about this horrible disease, and learn to deal with it.
 
yeah it's a course, usually done in groups, they are either every day for a week, or one day a week for a month that sort of time frame. They will teach you about diabetes and help you to work out how much insulin you need. If your clinic doesn't run that type of course then an appointment with your dietician could be good, they are generally pretty good at teaching carb counting.
I think all you have to do to change clinic is to get your GP to refer you to the clinic you would like to go to.
 
No I have to say I don't believe they do offer this but I could ask. There was a good dietician there once actually who always asked me about my diet and looked after me but unfortunately she retired not long after I was diagnosed and since then I haven't often been referred to one... and if I do they aren't much use to me. However I'll ask about it.... thanks for this advice :!:
 
Ok thanks. I've had a brief look at it and I will consider it but I guess it depends what future insulin I'm going to take as I really don't think I suit this new stuff. It is supposed to minimise hypos which technically has worked but unfortunately I think I might be losing feeling. It could be that my glucose levels are better controlled though, so I feel low when the glucose levels are lower - if that makes sense? Anyway I guess I should talk to my GP... I've just been though as I've been diagnosed with tendinitus which I was told is what diabetics are prone too but it has only occurred since I've used analog. I've started work in a new office not so long ago, just so happened I used to temp for them and went travelling for a short time afterward. They asked for me to work for them again which was really nice as I liked them all... so I am testing my glucose levels every hour of every day and changing every needle on my injections to try to avoid complications. I hide it quite well when I go low at the moment by sneakily eating a few biscuits and a glucose lucozade tablet (available from all chemists and a godsend for diabetics with hypos). The travelling was a good part of my life. With regard to my diabetes, my glucose levels or Hb1AC should have been lower apparantly but I wasn't told any of this beforehand so it was all guesswork. After complaining a few times though I've managed to get better care. However I don't like to complain at all, as it could lead to conflict and I also feel they should naturally provide that sort of care at the clinic anyway without me having to complain. It is partly why I feel my diabetes is such a struggle. However I am really touched by everyone's help in this forum and I hold hope in the advice and support given here. Thanks :!: :)
 
Hi rachel

Im sorry you are having such a horrible time. I was only diagnosed type 1 six weeks ago and know what it is like to want to get on top of this and how uttery fed up you can become. I also know how frustrating it is when you want answers but the people who are supposed to, cant or wont give you them.

Im not on the same type of insulin as you but if you like surfing the web and you feel up to absorbing the information, maybe look up websites to get information on excercise, types of insulin etc and see if this helps. Some of the ones that I quite like and find are good all rounders (dont have links sorry, googling them should work though)

Dsolve
IDDT (
BDEC - this also has a free online course thing you can do for carb counting (e learning section)
Abbot diabetes care

A word of caution that I have found useful however is to keep in mind that a lot of the targets set might not be able to be reached right away and if you are feeling bad and down then dont worry about it too much. Aiming for this will be a big improvement on your life as it stands at present .

Also, i've read lots of posts on here from people whose 'complication' symptoms get better when they get better control of blood sugar.

Baby steps, its all we can do -but when you look back over a period of time you'll see you've made leaps!! . Chin up :)
 
Hey lilibet... cheers. I've looked at IDDT which is very interesting however I haven't seen the BDEC so will definitely look into this. I hold a lot of hope in this site... I know I keep repeating this but for years I've asked nurses and doctors at my clinic to help me and they keep changing the subject. They also say things like "oh well when you're on Levimir this happens..." when I'm actually on Novarapid so they don't bother to check records before seeing me nor do they actually have the correct insulin on their system. They've tried to cover themselves with this and I could take it further but I just want to live like a normal person, and diabetes at the moment has destroyed half my life so it's difficult. Thanks for the links...you and others are a major help :mrgreen:
 
Anyway I'm re-taking my GCSE's after two attempts - one at school and the second in hospital... so third time lucky hey.. then I'm going for a career change to something other than office work :!: :)
 
Your medical professionals aren't. They seem to assume you know everything without them educating you then blame you for not doing what they didn't tell you.

There are not a few medics like that, unfortunately, but there are also some **** good ones.

Ask everyone you know including your pharmacists for recommendations, you deserve better.

Can't help with insulin except to pass on the recommendation for this site

http://www.insulin-pumpers.org.uk/

(not just for pumpers)
 
Hi Rachel.Your story was exactly the same as mine.I was really skinny tired all the time and only just left school at the age of 17.Mine was in the 1970s and i got stuck on a ward with all old people dying all around me.My parewnts were worried sick and they were only allowed to visit each day for half an hour.I was getting stabilised and they (the doctors) gave me extra insulin to try out hypos to see how i reacted.It was all horrible.We only had big glass syringes in them days and they had to be boiled after each use (imagine doing that now).My poor legs were full of lumps because they didnt learn you how to inject they just gave you the needle one day and said you can inject yourself now.I used to pretend to be brave but i used to cry my eyes out on my own.We used to have to weigh out our food as well and the diet was very strict.You couldnt get hardly any sugar free drinks,sweets etc.I was in hospital for 2 weeks then back in work.Anyway to cut a long story short i have a lovely life ive got a partner 4 children and no-one thinks i have anything wrong with me.Dont get me wrong i have my ups and downs but you only get one life so you have to live with what you have.Anyway rachel youll be fine and keep on this site because the people are lovely and will help you with almost anything you need.Take care for now
 
Thanks people. Sugarybibs you were brave indeed :!: I remember I was offered a syringe though and I refused point blank - was actually prepared to die as I hated the idea but then they offered me the pen - why the heck they didn't offer me that in the first place I'll never know. I was fine psychologically at first - and pretended to be fine at the hospital even if I wasn't. Anyway, I was just thinking how lucky we are actually in this day in age having the web and especially this community. :mrgreen: I really do struggle with this condition (don't like calling it a disease as that is something you catch from someone and isn't manageable so therefore I believe correct term is 'condition'). It doesn't help that my diabetic clinic don't help me out unless I complain. I have often felt like there is nobody to talk to about it because I'm just expected to "get on with it". Anyway this community and reading about possible advances in medicine since has made me have hope. I think it's just because I (as I'm sure thousands of diabetics) just want to lead a normal life. However with my BG all over the show and recent complications it is difficult :!: When I've tried to discuss it - this has proved impossible at the clinic recently - also having spasms in the street with Levimir and two faulty meters nearly brought me to death and then I nearly had a nervous breakdown. My family don't know about the ambulance as I don't want to scare them.. I always pretend I'm managing but the fact is I think of the complications I've had such as spasmatic attacks in my leg muscles meaning I can't walk when I'm low and numbness in my feet - and psychologically it's hard to deal with. However my hope has significantly improved with this community so I thank you all from the bottom of my heart :!: :mrgreen:
 
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