Dealing with diabetic complications alone [emoji20]

[Liftupjoe]

Hi I have been type 1 for 36 years now I’m 42 , I do not want to sound silly but I feel alone completely with dealing with my complications. People don’t think I suffer as you can not see it and call me boring when I say no to a drink or a long walk. I have my kidneys slowing down and neuropathy in my legs which I can not walk very far with I have a bladder condition on and off which doctor’s don’t know what it is, I feel 90 I went to doctor as I’m not coping very well with dealing with it all mentally hoping for some mental heath advise and basically said o should try and cope. I deal with alone as my mum and Dad have their own problems and my friends do not listen when I’m talking about how I feel and I feel that my husband gets annoyed with me as I talk about feeling bad all the time. I really feel I have no one to understand me and worry for my future. Is there any places I can go to meet other people who can understand what I am going through???

 

[archersuz]

Hi,
I'm sorry you're feeling like this. There are plenty of people on this forum who will understand and chat to you. My advice would be to go back to your GP and ask for counselling. I don't know too much about T1 but can you talk to someone at the hospital or clinic about this? You shouldn't have to deal with these feelings alone.

Suz

 

[Liftupjoe]

Hi,
I'm sorry you're feeling like this. There are plenty of people on this forum who will understand and chat to you. My advice would be to go back to your GP and ask for counselling. I don't know too much about T1 but can you talk to someone at the hospital or clinic about this? You shouldn't have to deal with these feelings alone.

Suz

Thank you for your swift reply, I feel I need help to cope with how I’m feeling but to be honest I fo feel silly feeling like this as some people are worse off than me x

 

[archersuz]

If you need help to cope with how you are feeling then there is nothing wrong with that! Diabetes is a very personal thing and ok there may be people who are 'worse off' than you, but you shouldn't feel silly.

When I was diagnosed 3 months ago, I crashed mentally, and received help. This forum is great for support and sharing concerns but if you need more help then please ask the professionals for it.

 

[Liftupjoe]

I know I will make an appointment with another Doctor x

 

[archersuz]

I know I will make an appointment with another Doctor x

Good! Let me know how you get on. And remember, you're not alone!

Suz xx

 

[Liftupjoe]

Thank you made an appointment for January x

 

[Bud1979]

Hi I have been type 1 for 36 years now I’m 42 , I do not want to sound silly but I feel alone completely with dealing with my complications. People don’t think I suffer as you can not see it and call me boring when I say no to a drink or a long walk. I have my kidneys slowing down and neuropathy in my legs which I can not walk very far with I have a bladder condition on and off which doctor’s don’t know what it is, I feel 90 I went to doctor as I’m not coping very well with dealing with it all mentally hoping for some mental heath advise and basically said o should try and cope. I deal with alone as my mum and Dad have their own problems and my friends do not listen when I’m talking about how I feel and I feel that my husband gets annoyed with me as I talk about feeling bad all the time. I really feel I have no one to understand me and worry for my future. Is there any places I can go to meet other people who can understand what I am going through???

I kind of know how you feel but in general people don’t really listen, they are all worrying about they’re problems which to them are massive but to you seem trivial. Doctors tend to be dumplings, I live alone and it’s easy to get depressed ( I do very often, and the world can fxxk off, but it really means I suffer ) so the best thing I have found is to do a lot of things on my lonesome, shopping for instance. I have no social life, no pubs, socialising, movies, and suicide is always there, we can’t be put in boxes so that makes us complicated to deal with, these “ experts “ know nought so let that be your motivation if you need any. You are not alone you are part of our family, with understanding and recognition of your problems, we are experienced and clever beyond mere qualifications so keep that in mind and use it to smile inwardly. I’ll raise you one eye, nine toes, neuropathy, retinopathy, depression, sexual impotence, frozen shoulders, foot ulceration, and not forgetting being fat ! But hey ! That’s me, your not alone, aw the best for 2018 cheers ( lucky ) John hehe

 

[donnellysdogs]

You are not alone..

Please find out if there is a GP specialusing in mental illness at your Prctice. See that GP if poss. Receptionist should be able to tell you without you explaining why you are asking....

Everybody closes in on their own lives..... and illnesses... honestly... cancer patients with no other illness ever will think their cancer is worse than anybody elses and also complain that family and friends dont understand..
Diabetics too.

You are definitely not alone... sometimes it does take one to know another one......

No professional medic can honestly know how we function or think as they are trained from text books and only then through their own experiences.... and their own willingness to either learn or stagnate with what they were told at med school.

Family and friends that are non diabetic cannot possibly truly empathise.. they cannot possibly know how it feels to inject and test etc every day of their lives and not have a day off.

Now, you can build upon this.... accept that you are your own creator of happiness and wellbeing...
(This wont be managed overnight-lol!!).... it hasto be worked on. Ie do you actually take 15 minutes out each day to yourself and doing something for you? This is the time in a day that would go to injecting and testing for an average T1...... so learn to reward yourself for 15 muns a day doing something for you as a reward for having these extra things in your life.

My own example.. I cant eat the same as others... I used to whinge and moan about it. (This is other probs, not T1)..... so now to give myself a reward I buy myself nice things with the money that others spend on food. Makes me fee good a lot longer than their food!!).......

Try to give time to positives each week. I write a heart post it note and place it on a mirror each Friday of
One positive for that week. It so lovely to pass this full length hallway mirror with happy notes on it.... its lovely to read them.. and its amazing how quick you can forget happy moments...
Dont rely on facebook or photos etc, go out your way to have something easy to mark and do to note and see visible good positive things...

 

[Liftupjoe]

I kind of know how you feel but in general people don’t really listen, they are all worrying about they’re problems which to them are massive but to you seem trivial. Doctors tend to be dumplings, I live alone and it’s easy to get depressed ( I do very often, and the world can fxxk off, but it really means I suffer ) so the best thing I have found is to do a lot of things on my lonesome, shopping for instance. I have no social life, no pubs, socialising, movies, and suicide is always there, we can’t be put in boxes so that makes us complicated to deal with, these “ experts “ know nought so let that be your motivation if you need any. You are not alone you are part of our family, with understanding and recognition of your problems, we are experienced and clever beyond mere qualifications so keep that in mind and use it to smile inwardly. I’ll raise you one eye, nine toes, neuropathy, retinopathy, depression, sexual impotence, frozen shoulders, foot ulceration, and not forgetting being fat ! But hey ! That’s me, your not alone, aw the best for 2018 cheers ( lucky ) John hehe

Thank you for that xxx

 

[donnellysdogs]

Oh and my most positive thing ever to help me has always been my dogs!!

I went 5 years without any as I thought my other illnesses were meaning I was having too many appointments and stays in hospital.

How wrong I was. How wrong otgers were that told me I was wrong to get another big puppy dog back in my life 3 days after another big operation.

Best thing I have ever done.
Socially I have met so many people again. I have pride at my achievements and beating challenges I have faced.

Find positives abd build upon them, dont let the past weigh you down...

The only think youncan do is try to build a better future... and we are all here to help and support....

(Believe me, I had people telling me I was mad.) made me doubt myself.... but oh boy, good comes
from all different directions.... and honestly, the average person will never understand complex conditions or how we are affected by them or anything..

I really wish there was diabetes therapy units like there are cancer therapy units... some hospitals have meet up groups or counsellors ref diabetes...

But we are all here and understand 24/7

 

[himtoo]

hi there @Liftupjoe
you're not alone -- you definitely have this fab community with you now.

keep posting please -- and keep your chin up !!
all of us have some issues -- but I continue to fight with a positive attitude.

 

[leahkian]

Hi i know what you are going through as i am going through the same as well as bringing up my 2 children as a single dad. See if this rings any bells for you. I got diabetes in 1979 aged 3 and my parents were told that if i got through the next 24 hours i would pull through which i did, they gave my parents a orange to practice giving injections on and these were the day of glass injection and massive needles. I had a few up and downs, in and out of hospital but the problems started when i was 18. I went to get my eyes checked and was told that i needed to go to hospital, i just thought he may want a doctor to check them so off i went. I was seen by the doctor who said that i needed laser treatment on both eyes he said it was like a pin prick. I went only to find out it was nothing like he said and was coming out after it with a headache and had to wear sunglasses even if it was raining outside. This went on for about six months and the last few session were done with me a sleep, i think i still hold the record for most laser treatment. Then one night i was out i i could not see anything out of my left eye, i went home and asked my dad could he see anything he said no so the next day i still could not see so i went to a and e and the doctor told me a tiny blood vessel has burst behind the eye and that's why i could not see and sent me to the eye Hospital at Sunderland this was 10 am on a Monday morning i was seen by one doctor then another and about 5 pm a doctor said come down here to the ward while i have a look. He had a look and said you will be first on the list for tomorrow i said for what he said a operation, i looked at my dad with the eye i could see out of and he was as shocked as i was. So the next morning i got up had a pre med and the doctor came and said it should take about 90 mins to do, 4 hours later i was back on the ward looking like long John silver. They said you have to try and lie down with your face in the pillow i could not do it but i needed to go to the toilet when a nurse came running down asking what was i doing out of bed i tried to say i was going to the toilet but vomit came up instead all over the nurse. The next day they took the patch off and asked what i could see i said the same as i could before nothing i was sent home with some tablets which they hoped would take the blood away. So a week later i went back only to be told that next week they were going to do the op again in the end i had three ops on the left eye and two on the right eye.

I had just got over all that was just gone 21 and i was told that i needed to see a renal doctor who told me that i would need a kidney transplant by the time i was 30 i walked out of there and broke down in tears. I was having trouble at my local hospital team which included me telling one doctor that if he kept wagging his finger in my face that i was going to put him through the window. I hit 30 and apart from 4 ops on my hands and elbow m renal function was around 20% I was told that they would give me a insulin pump if i went on a 5 day DAFNE course, i said what do you think i have been doing for the past 30 years so i said no and they said no. So i was due a meeting with the hospital management but a couple of days before i was asked would i agree to a half day course i said yes and got my pump in November and was still no further forward so i looked on the internet and found a doctor at Newcastle who did pumps and was also part of the transplant team so i went to see him and he had been sent 1 A4 sheet of paper with what was wrong, I had 3 thick files so i had to go back every week it took him 3 weeks to sort the pump out but now the problem was that the renal team were not sending him any letters.

I change all my care to the Freeman hospital and it was the best thing i ever did i was 37 when i was put on the transplant list for a pancreas and kidney. Then on April the 16th at 6 30 am i had a call asking could i get to the Freeman as there was a possible match for me i went through all the checks and was told that it would be 3pm, then 7pm , then 12 midnight i could hear the the the man coming to get me just before 5am on the 17th my sons birthday. i had been calm all day and now i was ready to be put to sleep. It was midday when i woke up in the HDU with more thing sticking out of my body, the transplant was a done and it was working i spent the next 7 months in and out of hospital which put a lot of strain on my children and parents

At the start of 2016 i was in so much pain that they took me back in to hospital and found out that my whole body had nerve damage which was there for life so after trying different painkillers and going to pain management the pain was getting no worse in may of that year i went from 85 kg to 107 kg in a week and was not eating so back to hospital where test showed that my bladder could hold over 8 pints without needing the toilet so i was given catheters to use and the doctor who did the op said they had cut some nerves away from the bladder during the op and then they found out that there was nerve damage to the bowel as well and for the last 23 years i have been under different mental health teams.


Sometimes i could scream or cry at what diabetes has done to me and my family, but also what my children have had to see and how well they have coped with it i am so proud of them. What the future holds i do not know but if my children who have not seen there mother for 5 years can keep going on then i will keep fighting to my last breath. We as a family have good days and bad days but no matter what i cherish everyday that i see them smile or do well at school. I will try my best to bring them up to be thankful for what they have and always to treat people with respect and to try there best at everything they do.

 

[ickihun]

Hi I have been type 1 for 36 years now I’m 42 , I do not want to sound silly but I feel alone completely with dealing with my complications. People don’t think I suffer as you can not see it and call me boring when I say no to a drink or a long walk. I have my kidneys slowing down and neuropathy in my legs which I can not walk very far with I have a bladder condition on and off which doctor’s don’t know what it is, I feel 90 I went to doctor as I’m not coping very well with dealing with it all mentally hoping for some mental heath advise and basically said o should try and cope. I deal with alone as my mum and Dad have their own problems and my friends do not listen when I’m talking about how I feel and I feel that my husband gets annoyed with me as I talk about feeling bad all the time. I really feel I have no one to understand me and worry for my future. Is there any places I can go to meet other people who can understand what I am going through???

Yep. Here.
Welcome @Liftupjoe ☺ ☺ ☺

 

[Gmmwtkd]

Hi I have been type 1 for 36 years now I’m 42 , I do not want to sound silly but I feel alone completely with dealing with my complications. People don’t think I suffer as you can not see it and call me boring when I say no to a drink or a long walk. I have my kidneys slowing down and neuropathy in my legs which I can not walk very far with I have a bladder condition on and off which doctor’s don’t know what it is, I feel 90 I went to doctor as I’m not coping very well with dealing with it all mentally hoping for some mental heath advise and basically said o should try and cope. I deal with alone as my mum and Dad have their own problems and my friends do not listen when I’m talking about how I feel and I feel that my husband gets annoyed with me as I talk about feeling bad all the time. I really feel I have no one to understand me and worry for my future. Is there any places I can go to meet other people who can understand what I am going through???

Hey!
There are plenty of people out there who understand exactly how you feel!
I usually get the same reaction from people as well, that or ‘you don’t look diabetic, you don’t look ill’
Might not be much but I’m always here if you need to talk!
I hope you’re okay x

 

[conniecar]

Yes chin up! I had a day off yesterday as I felt 1) fed up 2) my tests were odd 3) I felt different to everyone else. I’ve been type 1 for 43 years and have recently become a bit maudlin because I’ve neuropathy in my hands and feet, when I thought I’d be heading for a medal. My husband , who’s a nurse ironically, gets irritated I know because I’m ‘Always ill.’ I desperately want to fit in but don’t really. I think I’m under pressure at work to be superwoman in case my diabetes gets me a poor sick record. It’s all exhausting. I had a really good diabetes nurse once who let me cry and get it all out. You’re not alone, love and should be proud of what you do. I get mad when people are ignorant or unkind, or don’t know I’m in pain/hypo/hyper or panicking about appointments but we all have something going on. I work in a school with some kids who are so deprived it’s heartbreaking, and they give me a kick up the bum daily ( not literally or they’d be expelled ). Be proud of yourself, I know it’s hard but we just have to get on xxxxx

 

[ickihun]

I've only realised recently but diabetes is the only loyal and most reliant complaint I have. I wish all my other ailments was as predictable and understood. Thanks to this forum only thou.

If I find forums are brilliant as this one for my other ailments I'll be very very lucky. I'm dabbling and distinctly feel contribution is the reward from forums, for me.
Keep posting @Liftupjoe . We are listening and will reply when we can.

Hope things are feeling less heavy to carry, now shared.

 

[Australia 1]

Oh and my most positive thing ever to help me has always been my dogs!!

I went 5 years without any as I thought my other illnesses were meaning I was having too many appointments and stays in hospital.

How wrong I was. How wrong otgers were that told me I was wrong to get another big puppy dog back in my life 3 days after another big operation.

Best thing I have ever done.
Socially I have met so many people again. I have pride at my achievements and beating challenges I have faced.

Find positives abd build upon them, dont let the past weigh you down...

The only think youncan do is try to build a better future... and we are all here to help and support....

(Believe me, I had people telling me I was mad.) made me doubt myself.... but oh boy, good comes
from all different directions.... and honestly, the average person will never understand complex conditions or how we are affected by them or anything..

I really wish there was diabetes therapy units like there are cancer therapy units... some hospitals have meet up groups or counsellors ref diabetes...

But we are all here and understand 24/7

@donnellysdogs. Sharon, It is so good to see you again! I have had a bad go at this type 1 Insulin dependant Diabectic condition but this is me from Australia and I concur with much of what you have said. People here, are at a point where no subject is out of line concerning our conditions as you can see I have had to reinlisted here again. God has been good to me and if somebody can not afford something I will make arrangements for that person to get what they can.

You other story to me via IM has been very helpful to me. I thank you for your honesty. I will write to you later as the American/England window is now open for real time Skype call time.
Your mate, Sam.

 

[Australia 1]

Sharon. Last night and Morning I the U.K. I had a live ON the air Hypo right here. All of you knew it except ME. I want to Thank everybody who wrote to me during the Crisis mode. It was the Twilight Zone. I did my B/P and and of that EMT stuff be I was introuble. Dr. A pointed his finger to Doctor C and so on. I took way too much Novorapid as I did not write it down. So @donnellysdogs, I Thank you Honey for that personal touch.
Love from Sam to All of you!!!!!!!!!!

 

[Mike d]

Given your current role, I have to ask if you're still flying charters.