Long term diabetic

[beverley dean]

hi, I'm seventy two years old and I've had type 1 diabetes for fifty eight years. I'm finding that most doctors I come into contact with now don't have experience of dealing with patients like me and the advanced symptoms, such as neuropathy which is affecting my balance, that I now have. Is there anyone else out there who is feeling as isolated by their disease as I now feel? Who could share coping strategies and perhaps a virtual arm around the shoulder
Many thanks,
Bev.

 

[Bubbsie]

hi, I'm seventy two years old and I've had type 1 diabetes for fifty eight years. I'm finding that most doctors I come into contact with now don't have experience of dealing with patients like me and the advanced symptoms, such as neuropathy which is affecting my balance, that I now have. Is there anyone else out there who is feeling as isolated by their disease as I now feel? Who could share coping strategies and perhaps a virtual arm around the shoulder
Many thanks,
Bev.

Hi Bev...I cannot advise on any of the symptoms you have...diagnosed just a over a year with type 2..no experience of type 1... or complications (thank goodness)...I have no doubt once the forum 'wakes up' members who can empathise will be along shortly to offer some advice/support...fifty eight years...good grief... I can't imagine how the treatment was when you were first diagnosed...the difference now must be astounding...so sorry (but not surprised) you feel isolated by your diabetes...I believe many of us here have had similar experiences with our health care teams...the lack of understanding/inexperience is prevalent among many of the NHS professionals we encounter (my opinion)...whether type 1 or 2...newly diagnosed or not...however...this forum is definitely the place where you will find the support you need...whether that be practical suggestions for coping strategies...or a 'virtual arm around the shoulder'...good luck.

 

[Copepod]

I hope that other older people, very long experienced with diabetes and neuropathy, wil be able to hare experiences with you @beverley dean. How is the neuropathy affecting your balance? Is it due to loss of feeling in your feet? If so, do you have any help from podiatry services, as they're usually the experts for feet problems, and / or physiotherapy, who usually lead for people with balance problems?

 

[jusme]

Hello Bev I am another long term T1 - 54 years in a couple of months. I was always warned I would have heart problems but took no notice as no one else in the family ever had them, mind you I am the only diabetic. Heart problems arrived last November but not knowing what they were I ignored them, however I am pleased to say that I went for private treatment to get the problem sorted out and even though I am not A1 I can get about and do most of the things I enjoy.

I can't advise on neuropathy but I know others on here suffer with it, so I am sure they will be along soon and let you know how they have got on.

I have never really felt isolated I just took it as a matter of fact that I never knew anyone else who had got diabetes and got on with it but I was pleased when INPUT put me in touch with the forum because I have learnt such a lot from it.

jusme

 

[HOBIE]

Hi Bev & welcome from someone who understands. I met a bloke a couple of weeks ago who was very close to his 60yr badge of T1. We had a good talk & was good. There are not many of us who remember Glass syringes & "Panel Pin" needles but I still have mine in a cupboard. 😉😉

 

[Flower]

Hello Bev. I'm approaching 40 years T1 so I suppose I'm a middle ager rather than a long termer! 🙂

I've been dealing with neuropathic complications for about the past 20 years with Charcot foot and other fractures. Have you lost a lot of sensation in your feet which is causing your balance issues? I have some degree of loss of feeling in my toes but in the main I can feel where my feet are and know when they are on the pavement. Have you tried all the various drugs used for neuropathy such as amitriptyline, duloxetine etc? I didn't find any of them really relieved the symptoms so abandoned taking them. I use morphine patches now mainly due to broken bone pain and that allows me to walk and manage. Do you have a specialist helping you with the neuropathy?

I used to feel very isolated with my diabetes and the issues of sight loss and Charcot foot, blamed myself entirely and was unable to openly discuss any of it but since joining this forum I have been able to discuss issues that are causing me fear and dread with people who 'get' diabetes. That has helped me immensely to feel less on my own, I have learnt so much from reading other peoples experiences and their coping mechanisms and I hope you will find the same too.🙂

 

[Carolg]

Hi Bec and welcome to forum

 

[HOBIE]

Hello Bev. I'm approaching 40 years T1 so I suppose I'm a middle ager rather than a long termer! 🙂

I've been dealing with neuropathic complications for about the past 20 years with Charcot foot and other fractures. Have you lost a lot of sensation in your feet which is causing your balance issues? I have some degree of loss of feeling in my toes but in the main I can feel where my feet are and know when they are on the pavement. Have you tried all the various drugs used for neuropathy such as amitriptyline, duloxetine etc? I didn't find any of them really relieved the symptoms so abandoned taking them. I use morphine patches now mainly due to broken bone pain and that allows me to walk and manage. Do you have a specialist helping you with the neuropathy?

I used to feel very isolated with my diabetes and the issues of sight loss and Charcot foot, blamed myself entirely and was unable to openly discuss any of it but since joining this forum I have been able to discuss issues that are causing me fear and dread with people who 'get' diabetes. That has helped me immensely to feel less on my own, I have learnt so much from reading other peoples experiences and their coping mechanisms and I hope you will find the same too.🙂

Well said Flower ! Its better to talk & sort things out the best you can. 😎

 

[HOBIE]

Hi Bev...I cannot advise on any of the symptoms you have...diagnosed just a over a year with type 2..no experience of type 1... or complications (thank goodness)...I have no doubt once the forum 'wakes up' members who can empathise will be along shortly to offer some advice/support...fifty eight years...good grief... I can't imagine how the treatment was when you were first diagnosed...the difference now must be astounding...so sorry (but not surprised) you feel isolated by your diabetes...I believe many of us here have had similar experiences with our health care teams...the lack of understanding/inexperience is prevalent among many of the NHS professionals we encounter (my opinion)...whether type 1 or 2...newly diagnosed or not...however...this forum is definitely the place where you will find the support you need...whether that be practical suggestions for coping strategies...or a 'virtual arm around the shoulder'...good luck.

Well said Bubs 😉. My very good friend is a lawyer too & I can tell u can talk correct like

 

[Lisa66]

Hello Bev and welcome.

I'm another middle ager, like @Flower, approaching the 40 year mark. I think many people with diabetes have a feeling of isolation at some point...even if only for a frustrating day or so. There are some lovely caring people on this forum and someone always seems to be around with a solution or helpful suggestion to help someone in need of it. I'm sure you will be able to offer lots of advice too, to help and reassure others nearer the start of their journey.🙂

 

[Northerner]

The forum was actually originally started by a lady who had been Type 1 for 35 years at the time, and had never met another Type 1 🙂 Although diabetes (all types) may appear to be common, less than one in 10 people have it and of those there may be only a minority who actually want to talk about it. I always try to bear this in mind when I see a GP or practice nurse - they may never have encountered a person with Type 1 before (I do try to educate them 😉)