i hate and this disease

[viktoria]

Hi, with apologies i am using this forum to vent my anger, frustration and sheer disgust at this disease. Been type 1 for over 15 years. Never had proper control. Find it impossible to lose weight or stick to low carb. Hate the mood swings which affect my family so much. Loathe the injections, the abscesses, the leg pain, the depression, the gum disease, the exhaustion, the constant infections, the fact that a cold knocks me for six. The list goes on and on. I am now at a point where i feel u am about to give up. No time to visit drs. Family and very stressful job don't allow for support from clinics. I have the intelligence and know how to know what i have to do but don't do it. Is there anyone else out there that feels so low and fed up with the whole thing that they are ready to give up? Am sick of bursting in to tears and am now angry with it all.

 

[Juicyj]

Hi Viktoria,

Welcome to the most sympathetic forum on the internet - anyone reading your post will of felt the same way at one time or another. Everyone has their own coping strategy and all are different, but it's finding what works for you. I quite simply see this as walking a tightrope, it's so easy to fall off at any time but it's remaining balanced that's the hardest thing. No one quite understands what any of us goes through except ourselves.

What works for me is remaining positive - so keeping my sanity in check all the time, if that's working ok then the BG falls into place, i'm currently doing meditation and I can honestly say it's calmed me down a peg or 2, it's me more in tune with my body and thinking so that I live in the present and not worrying about the future, I also follow a low carb diet - not religiously, but have found a daily diet that I stick to - except for the odd meal at a weekend, I have cut out all sugar, bread, pasta, rice, potato (except the odd bag of crisps) - it's not been hell, actually far from it, I no longer get the carb cravings I used to and have no desire to eat chocolate etc (this has always been a serious addiction for me).

I have taken time to really educate myself so have read books, done DAFNE, and I do badger my DSN regularly with queries.

I have off days and dark days but talk about it - venting steam is vital. I've found that being angry though leaves me wound up and is a difficult negative emotion to get rid of, i've found that if I help others though I feel better about myself, so just doing small acts of kindness like letting someone go in front in the supermarket with less than me or helping someone when they least expect it can really lift my spirits - may or may not work for you, but takes my mind of whatever is troubling me.

Do you know any other type 1's around you that you can talk to - it sounds like you need a good friend now who can listen, I hope you have one.

It does get better, honestly, makes me appreciate the better days, but don't let this get on top of you, find your way round it and then share whatever it is here with others.

:thumbup: and a big hug x

 

[faeoj]

omg you have pretty much summed my feelings up in this one post! I turned 21last month and was diagnosed at 7 so about 14 years now! 14 years without one day off to be normal and do normal things without having that constant nagging feeling in the back of my head about diabetes! i wish there was a simple way of doing the right thing and it was easy! I really do feel your anger so feel free to have a rant at me we all need a chance to blow off steam and have a moan about everything! x


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[viktoria]

Thank you for supportive replies and to moom1973, for some reason i cant reply to private messages. Its good to know am not the only one at the end of a tether and its better to know that there could actually be some light at the end of this dark tunnel. Juicyj, i don't have a close friend, im one of those people who don't socialise outside work and family. I feel when i talk that im just whining but as much as i love my family dearly that don't "get" this. I may look into the meditation, thankyou. I'm glad i found somewhere i can talk to people who really understand.

 

[moom1973]

Hi Vik,

You're certainly not alone in how you feel, im pretty certain they'll be lots reading your post who can completely relate to what you've posted x

I think you need to of written 5 forum posts before you can PM

Take care and do get in touch if you need someone to talk to at anytime x

Steve

 

[viktoria]

Knew there would be a knack to it! Thank you Steve. X

 

[jeves]

Hi, with apologies i am using this forum to vent my anger, frustration and sheer disgust at this disease. Been type 1 for over 15 years. Never had proper control. Find it impossible to lose weight or stick to low carb. Hate the mood swings which affect my family so much. Loathe the injections, the abscesses, the leg pain, the depression, the gum disease, the exhaustion, the constant infections, the fact that a cold knocks me for six. The list goes on and on. I am now at a point where i feel u am about to give up. No time to visit drs. Family and very stressful job don't allow for support from clinics. I have the intelligence and know how to know what i have to do but don't do it. Is there anyone else out there that feels so low and fed up with the whole thing that they are ready to give up? Am sick of bursting in to tears and am now angry with it all.

I'm really sorry you feel the way you do. I've been diabetic for 31 years and the best thing I did was the dafne course it changed me so much. My blood sugers are great now I'm not afraid of trying new things so if I can help in anyway please get in touch.

 

[moom1973]

Totally agree with Jeves, the DAFNE course really is great, I only went on it earlier this month but I learnt more in a week than I have in 23 years with type 1. Just wish i'd of known about it a lot sooner x

 

[viktoria]

Thanks jeves. From the replys i have had i think i need to start from scratch and go to dr. Will enquire about course. I've moved from wales to England and back 4 times in 8 yrs and had had one of the most stressful times of my life in that period. Has also meant changing Drs about 6 times so that has not helped. Will try to be positive and find the courage to take this vile disease head in. Am so glad u found this site. X

 

[viktoria]

Just a Ps whinge about having fat fingers. Apologies for spelling! X

 

[rachy0121]

Hi, was only diagnosed Feb of this year. Im 22 and At first I literally thought nothing of it, kept and eye on what I ate and drank, but it never really sunk in that for the rest of my life Id be constantly watching what Id have to eat and not eat and how to manage being so high and hypos. Im so confused with my insulin intake in co ordination with the carbs I eat, I have to keep a diary now of how many carbs Im taking in, so they can put me on 4 injections a day instead of two. Im starting to feel terrible mood swings like other people mentioned on here and extreme fatigue. I didnt know if that was a symptom of diabetes? I need some advice from people who have had this disease for years and I feel cheeky to start complaining as Ive only had it a short while in comparison to others that have dealth with it for as long as Ive been alive. I get scared its going to cause complications with my heart as I already have a heart condition. I try to put on a brave face to family and friends and pretend that Im fine when really I would just like to sit and have an in depth chat with someone to clear the questions I have. Every day I think of questions. I get scared at work when I can feel a hypo coming on and often think people dont take me seriously when I say I need to stop and drink some juice and eat a few biscuits. I think that some people think Im being over dramatic. does anyone feel this way?
really appreciate a chat

xxx

 

[mrman]

Good start keeping a diary. Not cheeky having a moan at all, lots of us do that lol. Can be hard and frustrating especially at the start wanting good control and not knowing fully how to.get it.
The four a day injections (mdi) are alot easier (in the long run) and more flexible. Knowing how to carb count is a must though, as well as being basal (long acting) right. Many people without the condition don't really understand, its not their daily though, I didn't before I had it. often when you are low and say to a college they will not often fully understand the consequences of noir treating it, our the bad side effect of over treating it and ending up high. Any questions feel free to ask or pm. Keep at it, it will get easier

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[rachy0121]

the doctors said that the 4 injections a day are easier too, they gave me that large book with loads of pictures with all different foods in and I did it that way and totalled my carbs for 2 weeks but then they told me to do it by the packaging and its so bloody hard if Im honest, Im not exactly the best at maths. how long have you been diagnosed now? theyve told me to stop smoking which i have, and keep drinking to a minimal which i do, i think its just the little things like resisting the urge to have a dessert when im out and ive already had my insulin. have you ever ended up in hospital with being too high or low?
thanks for replying

 

[mrman]

Hey again, been diagnosed 2.5 years now, was put on the four a day injections straight away. Been using a pump now for a few months (best thing ever). Only been in hospital once with high sugars (off the meter) and high ketones (off the meter) but that was on diagnosis. Staff were surprised I was conscious let alone walking around. 3 days on a drip sent on my way and told to inject x amount of units basal and x amount at meals. Let out of hospital before seeing dsn, no meter to test nothing. Lets just say this didn't work very well so went about learning everything I could using net, forums etc. started carb counting myself so knew a good bit before eventually doing a carb counting course (push for one of these asap) called daphne. Carb counting from packets ok but what about home made meals etc. a good book is the carbs and cals book. Lists weights and carb content with pics so you can work out how many carbs using it, from amazon. A calculater may be handy. Well done on the smoking (I'm still working on that). Enjoy a night out now and then, with precautions of course. For a while shortly after diagnosis was letting the insulin, diabetes stuff etc control me too much. feeling a bit sorry for myself if im honest. Anyway, turned that around enjoying life, exercising and feel in control.
Anyway, thats me, are you in regular contact with your dsn, as your quite new to this malarky.

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[rachy0121]

What was your bloods when they were off the meter? Or even when u were first diagnosed?
I do have that book and it is really helpful but they want a really in depth knowledge of exactly how much I'm eating. So they want me to weigh everything out. I have to see my nurses every other month just to see how I'm getting on xx

 

[mrman]

Think the meter would read up to 30 something, so they were higher than that lol. I know I was let out after 3 days when they came down to 10. Yep, still weigh things now to work out carb/insulin ratios. Inevitably, over time you will automatically learn how many carbs are in certain things. You seem to have a.good team behind you, so thats a good start. Seems like they are wanting to get a pattern of your carbs eaten and insulin given. With that and your blood sugar readings they will help you work out how many units of insulin you should have with so many carbs. May even be different at different meal times. You'll get there

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[viktoria]

Been up since 5am, hot sweats, shaking bg at 2.2. Taken 2 hours to get my brain to work. Kids now up and need sorting, dog sat with legs crossed and i have a meeting at work at 8.45. And to tip it all i have bags under my eyes and hair like cruella! Difficult to be positive right now. Want to get back under duvet and shut out the world. X

 

[Shzz46]

Woke up yesterday morning with a gum infection right at the front of my mouth can hardly eat anything my mouth is so sore I cannot bite into anything it's my sons wedding on Monday I'm only hoping it's better by them


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[Liz King]

I agree with all earlier posts! I too hate this disease, type1 for 35 years. The constant, non-relenting ongoing druggery is so dull & boring. My hb1ac results are good, but day to day still have unexplained highs and lows!! To try to help medically - the DAFNE course is great, learnt so much - why starving hungry when too high, treat hypos with fruit pastiles - easier to eat three fruit pastiles in work meeting etc also quicker sugar for body than biscuits etc - which also load on the weight. Has allowed me to lose some weight, which counldn't do before. Also PMT - I get very high blood sugars before - its OK adjust insulin to blood sugar not to food which is fine as I have no desire to eat anyway. If you have good nurses running the course this is the chance to ask all those questions which have been banging around in your head for years. I came out of the course feeling much more confident and if I need to test at work or elsewhere I just do it, dont ask - some will ask but most will ignore you. This gives you the chance to explain as much as you wish too - puts you in control of the situation. I believe the biggest challenge with this condition is keeping mentally strong and upbeat, yeh I can get very down especially when thinking of the future possibilities - but I have learnt to try to live in the moment - when getting down be selfish go and do something you want instantly, a walk, stroke the cat(they are good to talk to, get angry at, cause they just soak it up for you) shower, dress-up anything to regain the living in the moment and reassure yourself that it can make you hard work BUT you are doing your best and it wont always be great. Congratulate yourself when you manage to do something, which has taken some planning especially when for others it was straightforward.

 

[viktoria]

Oh i wouldn't even start in the pmt! This morn was a bit of a chore but made ne ring Drs and have appointment this eve. ( only managed by snarling at receptionist)going to request dafne and an appointment with dn to do major overhaul. Had long walk around perimeter of office in the sunshine and decided enough is enough. X