Struggling

[Bags]

Hi, my name is Julia, I am a T1D for 50 years, just wanted to introduce myself.

 

[Bags]

Hi fellow diabetes sufferers. I am a type 1 diabetic and have been for 50 years. As a child and teenager I ignored my diabetes and just wanted to be "normal". I certainly didn't realise what the implications of this would be. I suffered with diabetic retinopathy as a late teenager/early 20's and had copious amounts of laser treatment. As I have got older I have really struggled with my mental health and am really struggling to keep my head above water for the past few years following covid. I live on my own and am very lonely and don't seem to get the support I need from my family, who are not empathetic or compassionate towards my diabetes or mental health. I just wondered whether any of you had had mental health issues and how you cope with them. It would be lovely to hear from fellow type 1 diabetics. Hope to hear from you. Julia xx

 

[Ieva DUK]

Hi @Bags and welcome to the forum!

That's quite a time I would say, so if you'll feel comfortable sharing your experience and knowledge with the Forum - please do so, we're always eager to hear from our new users!

 

[stephenS50]

Hello @Bags and welcome to the forum.

 

[rebrascora]

Hi Julia and welcome.

Great to have you here, especially as you bring so much lived experience of diabetes with you. Many congrats on clocking up 50 years! I hope you have come through them mostly unscathed.

Would you like to tell us a bit about how you manage your diabetes? ie MDI or a pump and which insulin(s).
How are you enjoying Constant Glucose Monitoring? Hopefully you have found it a game changer like many of us here.

Is there anything particular which brings you to the forum at this time? If you have any problems, concerns or questions please shout up with them and we will do our best to help.

 

[Inka]

Welcome @Bags 🙂 There was a Mental Health thread recently that you might find helpful:

Mental health / Gratitude

I’m not going through anything particularly at the moment but wanted to say this… It’s tough navigating the tempest that MH causes. Lots of us here know that. Also sometimes the best intentioned support feels like it’s intruding or meddling or trying to “fix” us when all we want is to be...

forum.diabetes.org.uk

I don’t have MH problems but I have been through diabetes burnout, which was awful. I found taking a little pressure of myself helped, as did keeping things simple, eg same breakfast and lunch each day.

For loneliness, have you tried getting out? I know it might sound a trite thing to say but going to clubs, joining a local group, doing an Adult Education course, etc, can all bring contact with others and hopefully help.

 

[Bags]

Welcome @Bags 🙂 There was a Mental Health thread recently that you might find helpful:

Mental health / Gratitude

I’m not going through anything particularly at the moment but wanted to say this… It’s tough navigating the tempest that MH causes. Lots of us here know that. Also sometimes the best intentioned support feels like it’s intruding or meddling or trying to “fix” us when all we want is to be...

forum.diabetes.org.uk

I don’t have MH problems but I have been through diabetes burnout, which was awful. I found taking a little pressure of myself helped, as did keeping things simple, eg same breakfast and lunch each day.

For loneliness, have you tried getting out? I know it might sound a trite thing to say but going to clubs, joining a local group, doing an Adult Education course, etc, can all bring contact with others and hopefully help.

Thank you for your message. I have joined all sorts of different groups and activities on a weekly basis, but I find no joy in anything I do, am just going through the motions but push myself to go hoping that one day there will be some light at the end of the tunnel. Julia

 

[Inka]

That sounds bad @Bags Sometimes feeling down and not feeling pleasure in anything can be depression rather than just feeling down. You might have spoken to your GP already but if you haven’t, please do. There are plenty of people here who’ve taken anti-depressants short-term, including me. They’re not a magic cure, but they take the edge off things.

I also found Tai Chi really helpful mentally, even though I initially only went for the company. It’s not just calming, it’s mentally strengthening too.

 

[everydayupsanddowns]

Welcome to the forum @Bags

I’ve merged your threads to keep all the replies to your intro threads in the same place.

Sorry to hear you have been having such a tough time, but huge congratulations on your 50 years with T1 - that’s an amazing achievement, and puts your diagnosis right back when the expected negative impact on life expectancy was much greater than it currently is. We have a few veteran T1s with similar amounts of time on the clock, and some relative newcomers like me with only 30-odd years under my belt.

Did you apply for your 50 year medal from Diabetes UK?

Many of us on the forum have had some struggles with mental health challenges - both diabetes distress, burnout, and also other mental health challnges unrelated to diabetes. You aren’t alone.

Some years ago one member who was working through a period of diabetes-related depression documented their experiences in this thread

Successful strategies so far in dealing with depression and Diabetes

I found it tempting to hide away over the last couple of months. After 9 years of Diabetes I finally hit a wall as HbA1c reached the mid 40s and so no longer improved, spinal stenosis gave me numb feet over night, an MRI showing lesions on the brain and I watched my Mum die of Dementia...

forum.diabetes.org.uk

Hope you find some practical steps to rediscover enjoyment in things, lift your mood, and be kind to yourself.

 

[Bags]

That sounds bad @Bags Sometimes feeling down and not feeling pleasure in anything can be depression rather than just feeling down. You might have spoken to your GP already but if you haven’t, please do. There are plenty of people here who’ve taken anti-depressants short-term, including me. They’re not a magic cure, but they take the edge off things.

I also found Tai Chi really helpful mentally, even though I initially only went for the company. It’s not just calming, it’s mentally strengthening too.

Thanks so much for your comments. I actually had a total mental breakdown in April 2022 and the crisis team were involved. I have tried endless antidepressants but haven't really found anything that helps. I actually do Tai Chi already which I am getting more relaxed in doing, initially I was so anxious and stressed about it I am not sure I gained any benefit. I find it so hard to take in and retain information, that I can only remember the first 3 moves!!

 

[Inka]

I hope your Tai Chi teacher is as lovely as mine. Mine was very chilled about any ‘wrong’ moves 🙂 I don’t know if your session does it, but we finished with 20 minutes or so of Qigong, which was an absolute revelation. It made me so relaxed but also had a huge personal effect on me. Hard to explain without rambling, but after a few weeks I felt more ‘me’ than I’d felt for a long time, and very much in touch with my body and spirit.

I also find Meditation and Mindfulness useful.

 

[Bags]

Hi Julia and welcome.

Great to have you here, especially as you bring so much lived experience of diabetes with you. Many congrats on clocking up 50 years! I hope you have come through them mostly unscathed.

Would you like to tell us a bit about how you manage your diabetes? ie MDI or a pump and which insulin(s).
How are you enjoying Constant Glucose Monitoring? Hopefully you have found it a game changer like many of us here.

Is there anything particular which brings you to the forum at this time? If you have any problems, concerns or questions please shout up with them and we will do our best to help.

Thanks for your message Barbara,

As I mentioned I I have had type 1 diabetes for 50 years and was diagnosed aged 4. Although I found it difficult to understand at that age why I suddenly could not eat the things I enjoyed and why my father chased me around the garden and held me whilst my mother injected me with a glass syringe and whopping needle, I came through my childhood fairly unscathed although the fear of god was put into me by various doctors and family about what complications I would have to endure unless I looked after my diabetes. i totally rebelled against it all and ate what I wanted in secret and went on to be a rebellious teenager and into my twenties. As I mentioned previously I had a lot of laser treatment for diabetic retinopathy in my late teens and twenties. My motto at that stage of my life was to live hard and die young! Somehow now I wish I had looked after myself better. I now follow a mainly keto diet and am able to maintain my blood glucose levels at a fairly consistently, obviously there are always random highs for no apparent reason. I am not on a pump, but am on a waiting list which could take 5 years for one! I take Humolog and Lantus injections. I also have an underactive thyroid and various other conditions. I have suffered with manageable anxiety since my thirties when my partner dropped dead of a heart attack. However more recently I suffered a mental breakdown in April 2022 and have since been struggling with my mental health, nothing seems to help and I have had various anti depressants and therapies. I am really looking to have contact with other Type 1 diabetics and gain any tips for anyone who has suffered with their mental health. I am also a smoker which I know is an absolute no no for anyone, let alone a diabetic, so any tips on giving up with be gratefully received. It is totally my go to coping mechanism. I look forward to hearing from you.

 

[Bags]

I hope your Tai Chi teacher is as lovely as mine. Mine was very chilled about any ‘wrong’ moves 🙂 I don’t know if your session does it, but we finished with 20 minutes or so of Qigong, which was an absolute revelation. It made me so relaxed but also had a huge personal effect on me. Hard to explain without rambling, but after a few weeks I felt more ‘me’ than I’d felt for a long time, and very much in touch with my body and spirit.

I also find Meditation and Mindfulness useful.

Thanks Inka, my Qigong teacher is lovely and he says he can see a difference in me, but I don't feel it yet. He is also a type 1 diabetic and never seems to worry about it! Hopefully if I keep at it I may start feeling more benefits and would give anything to feel my body relax!! Am so tense and inflexible it is crazy.

 

[rebrascora]

Really sorry to read that you are struggling with mental health problems and that you lost your partner so young and in such sudden and tragic circumstances.
I have experienced mental health problems for more than 20 years. Oddly my diabetes diagnosis 5 years ago may have impacted me in a positive way as it caused me to change my diet to low carb..... not sure I could manage keto.... and that improved my mental health and other long term health issues like digestive upset/IBS, migraines and joint pain. Prior to diagnosis I was a massive comfort eater and to say I was a sugar addict is probably not an exaggeration. Obviously that had to stop and to some extent having to inject insulin keeps me on the straight and narrow although following a low carb way of eating has also reduced the cravings significantly, so I am less temped. I recently also had to give up alcohol which was another bit of a mental crutch although not to excess, so I am slowly losing my options for self medicating my mental health issues but that seems to be no bad thing, as it turns out. Walking (or other exercise) helps too. I have tried medication in the past but never found one that really helped much or agreed with me. I started using Amitriptyline last year and that helped a bit but it makes me really groggy in the morning and sometimes I don't wake up when my Libre alarm goes off or I wake up and go back to sleep straight away before I can eat a jelly baby or two. And then wake up a couple of hours later with far too much red on my Libre graph. I have even woken up when high and injected a correction dose and fallen back off to sleep with the needle still in me and then woken up again as I dropped the needle. I do feel that Amitriptyline has been beneficial and I will use it again when I hit a bad patch but I am managing OK at the moment and the fine weather definitely helps. The Amitriptyline is a muscle relaxant, so if you are really tense all the time it might be worth considering if you haven't tried it. I was initially prescribed it to help with muscle spasm in my back, but found it also had a calming effect.

Thankfully I have never smoked so I haven't had the challenge of trying to give up. My brother in law found hypnotherapy worked really well for him and he stopped just like that, but everyone is different and you have to find what works for you and of course you need to want to give up. I think if you are really low at the moment, it is probably a tough ask to give up. Have you considered vaping instead as a possible intermediate step?

You are doing really well to get out to take part in social events and exercise classes. I am bad for locking the door and drawing the curtains and not answering the phone when I am mentally struggling. What I have learned over the years is that the bad patches ebb and flow and if I dig in and wait it out, I come back up again in my own time and trying to force it puts too much pressure on me and makes it worse. Having that knowledge and experience helps me to come through the bad patches, knowing that if I give it time, my perspective will change. What I find really surprising is how I can go from everything feeling totally impossible and a complete failure and not wanting to have any contact with anyone, to the point that I sometimes only leave the house to feed and muck out my horses after midnight so that I don't bump into anyone..... to other days when I am happy to chat with friends and neighbours and make plans of things I would like to do and wonder how/why my perspective was so horribly wrong the previous day when just getting in the shower was like climbing Everest! It really is frustrating but I have found acceptance of it is better than fighting it. That said, I am a bit of a loner and I can be pretty content on my own most of the time, so I don't tend to feel lonely.

I think it also helps to come on this forum and help support other people who are struggling with their diabetes management or mental health even if I am not good mentally myself and in fact doing that helps me to feel a bit more positive about myself and that can help to bring me out of my mental hole. So for me, this forum can be therapy as well as a source of knowledge and practical experience to help me manage my own diabetes well.

Anyway, I have waffled on far too much. Not sure if anything I have said will resonate with you or give you some ideas of things to try, but hope that you find the forum a supportive and reassuring place to be and that you find some comfort and relief with your mental health soon.

 

[Bags]

Really sorry to read that you are struggling with mental health problems and that you lost your partner so young and in such sudden and tragic circumstances.
I have experienced mental health problems for more than 20 years. Oddly my diabetes diagnosis 5 years ago may have impacted me in a positive way as it caused me to change my diet to low carb..... not sure I could manage keto.... and that improved my mental health and other long term health issues like digestive upset/IBS, migraines and joint pain. Prior to diagnosis I was a massive comfort eater and to say I was a sugar addict is probably not an exaggeration. Obviously that had to stop and to some extent having to inject insulin keeps me on the straight and narrow although following a low carb way of eating has also reduced the cravings significantly, so I am less temped. I recently also had to give up alcohol which was another bit of a mental crutch although not to excess, so I am slowly losing my options for self medicating my mental health issues but that seems to be no bad thing, as it turns out. Walking (or other exercise) helps too. I have tried medication in the past but never found one that really helped much or agreed with me. I started using Amitriptyline last year and that helped a bit but it makes me really groggy in the morning and sometimes I don't wake up when my Libre alarm goes off or I wake up and go back to sleep straight away before I can eat a jelly baby or two. And then wake up a couple of hours later with far too much red on my Libre graph. I have even woken up when high and injected a correction dose and fallen back off to sleep with the needle still in me and then woken up again as I dropped the needle. I do feel that Amitriptyline has been beneficial and I will use it again when I hit a bad patch but I am managing OK at the moment and the fine weather definitely helps. The Amitriptyline is a muscle relaxant, so if you are really tense all the time it might be worth considering if you haven't tried it. I was initially prescribed it to help with muscle spasm in my back, but found it also had a calming effect.

Thankfully I have never smoked so I haven't had the challenge of trying to give up. My brother in law found hypnotherapy worked really well for him and he stopped just like that, but everyone is different and you have to find what works for you and of course you need to want to give up. I think if you are really low at the moment, it is probably a tough ask to give up. Have you considered vaping instead as a possible intermediate step?

You are doing really well to get out to take part in social events and exercise classes. I am bad for locking the door and drawing the curtains and not answering the phone when I am mentally struggling. What I have learned over the years is that the bad patches ebb and flow and if I dig in and wait it out, I come back up again in my own time and trying to force it puts too much pressure on me and makes it worse. Having that knowledge and experience helps me to come through the bad patches, knowing that if I give it time, my perspective will change. What I find really surprising is how I can go from everything feeling totally impossible and a complete failure and not wanting to have any contact with anyone, to the point that I sometimes only leave the house to feed and muck out my horses after midnight so that I don't bump into anyone..... to other days when I am happy to chat with friends and neighbours and make plans of things I would like to do and wonder how/why my perspective was so horribly wrong the previous day when just getting in the shower was like climbing Everest! It really is frustrating but I have found acceptance of it is better than fighting it. That said, I am a bit of a loner and I can be pretty content on my own most of the time, so I don't tend to feel lonely.

I think it also helps to come on this forum and help support other people who are struggling with their diabetes management or mental health even if I am not good mentally myself and in fact doing that helps me to feel a bit more positive about myself and that can help to bring me out of my mental hole. So for me, this forum can be therapy as well as a source of knowledge and practical experience to help me manage my own diabetes well.

Anyway, I have waffled on far too much. Not sure if anything I have said will resonate with you or give you some ideas of things to try, but hope that you find the forum a supportive and reassuring place to be and that you find some comfort and relief with your mental health soon.

Hi Barbara, thnak you so much for your detailed message, it has certainly given me some ideas.

I am so sorry to hear you have been struggling with your mental health for so long. I never seem to get any ups or times when I feel like my old self, but hopefully these will come.

Fascinated you have horses, I used to have a horse but he now lives in Wales with some friends because I was struggling to look after him and kept pulling muscles when I rode him, thats aside from the financial implication of keeping a horse, which I can now no longer afford.


Would be lovely to chat to you some time if you felt up to that?

Julia

 

[rebrascora]

Hi Julia.

So sorry that you had to let your horse go because you were struggling, but great that friends were able to take him.
We had a pny when we were little, which my sister and I shared but I bought my first horse as a yearling when I was 33 and he is now 27. It was just after my divorce and I was in the middle of a barn conversion at the time. I also got first refusal on his baby brother who was just 3 days old when I met him. I must have been mad (probably an early mid life crisis) to get two very young youngsters and it has been a long, steep learning curve since then. 🙄 A year later emotional blackmail was involved in me buying their mother who was in foal to the same stallion, so 2 became 3 and then 4 when she foaled and another year or so later, the people who I had bought them off were selling up and had nowhere for the stallion to go, as livery yards would not accept a stallion. He came to me supposedly for a few months until they found somewhere suitable but in the end they stopped contacting me or replying to my messages and he stayed with me for many more years until sadly colic took him. I loved him like my own and I was devastated when I lost him. He was an absolute gent. I still have the mare, Cora, 31yrs (an unpapered Welsh cob) and the two boys, Rebel (27) and Rascal (26), who both live up to their names 🙄 and their "baby" sister, MeMe, a mere 16yrs old. Foals in between went to friends and family. My sister has 2 of their full brothers, Jack and Skwert.
I rented land relatively cheaply for most of that time in the centre of my village, but had a lot of land management to do and then eventually I bought it when it came on the market for a rather inflated price due to being a potential development opportunity. Hopefully it will be an investment for the future, but my horses have been there all their lives and were happy there and it is within walking distance of my home, so I was persuaded to pay more than I wanted.
I rarely ride these days as they are getting older and I struggle for time. My partner has another 3 horses which he hunts and carriage drives and I am committed to helping him with his as well, particularly at this time of year as he is into showing and he needs a groom. I love them all, but it is a lot of hard work. I had Rebel broken to drive as a 2 year old so I was into driving before I met my partner but just a pleasure driver, not competitive and just a happy hacker as far as riding is concerned. My sister is really into Western riding and got me interested in Natural Horsemanship, so I have quite a broad spectrum of experience and I do my own hoof trimming which also saves me money. I never have holidays and buy old bangers for cars and mostly wear hand me down clothes, so despite owning horses, I am by no means rich and in fact very low maintenance and live within my very limited means by doing a lot of the work myself. My horses are my family I guess and in some respects they have helped me mentally because I have to get out of the house to see to them even when I can't face people or look after myself very well. They have kept me going.
Anyway, that is kind of my story. I am happy to chat online perhaps via private message or texting but I find talking on the phone really awkward, particularly to people I don't know very well.
I would love to hear more about you and what you used to get up to with your horse. X