Hello, I’m really struggling and as the title says I don’t think I can live with this anymore. Not only do I have type 1 but I experienced 18 years of abuse as a child and as soon as I escaped I got diagnosed with diabetes (shows life never gets better). I don’t get any support with my mental health, despite trying for 6 years, the nhs are terrible. If that wasn’t bad enough diabetes encourages self harm because if my bloods are high I see that as a failure and that I need to punish myself in some way. It’s given me an eating disorder because I want to stay in range so in order to do that I don’t want to eat, also I know it’ll trigger a meltdown. Diabetes team won’t help with ratios either so I’m injecting up to 15 times a day and the insulin acts like water, I’m scared that this alongside untreated mental health is going to cost my life, I’m scared of what I will do during a meltdown. The NHS have let me down in every single aspect of my health and I’m fed up fighting, sorry but I needed a rant, does anyone else hate this illness as much as I do? I honestly can’t see life ever getting better because of the fact that I will have this forever alongside mental health problems which will never be treated because the nhs hate me. How do people live with this?? Like they told me 6 years ago when I was diagnosed that this would get easier but it’s not, it’s getting worse everyday and nobody cares
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Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent
Oh bless you, you have been dealt a very difficult hand. You don’t deserve to have been abused and I’m so sorry that you were failed and not protected by those around you growing up. Healing from the pain of abuse is possible but lack of nhs support doesn’t help. Your local MIND may have some options that are helpful for both dealing with your history of abuse and with your current self harming. MIND have well-being hubs that may have resources that can help or be able to sign post you to more specialised help. A lot of what they do there is peer support so it’s not a replacement for therapy but it may still be more help than the nhs
It is very unfair that you got diabetes once you escaped the abuse. It is really important to remember though that chronic illness is not a punishment or judgement on you. I can understand the need for control and with your history it’s no surprise that it’s lead to disordered eating as you seek to gain some control over your life.
I’m sorry that your diabetes team is failing you. It isn’t personal. The nhs doesn’t hate you. It’s just creaking and failing. Do you have anyone in your life who can advocate for you and go to appointments with you? Sometimes just having a friend with you gives you enough security to advocate for yourself or sometimes they need to speak for you. If you can’t think of anyone you can request to have a chaperone at any nhs appointment for any reason and as an abuse survivor it may be useful to have a third party present even if it’s not as an advocate.
Your blood glucose is not a measure of your self worth. I understand how it’s easy to get into that mindset (I live with an eating disorder, which is mostly under control but never fully absent) but it’s a lie.
Injecting up to 15 times a day will confuse your body and make it harder for you to stay in target. When dealing with disordered eating and self harm it’s helpful to look at harm reduction instead of perfection. When dealing with diabetes management perfection is impossible and being able to cope with variation is necessary. When you talk about highs what sort of numbers are you talking about? Above 7, above 10, above 14, above 20? You might not feel great above 14 but it is still a safe level in the moment. Would it be possible for you to establish a wider target zone so that you’re not punishing yourself if you are high but safe? Give yourself generous parameters. That way you can reduce the number of injections and start to see the wood for the trees. Injecting lots makes it hard to know which insulin is doing the job which makes it harder to manage long term.
We can’t give you specific advice about ratios etc but we can help you come up with strategies to give you a fighting chance of making life easier (not EASY but easier).
We’re here to listen. You have been badly hurt and are hurting. We can be witness that even if we can’t take the pain away.
It is very unfair that you got diabetes once you escaped the abuse. It is really important to remember though that chronic illness is not a punishment or judgement on you. I can understand the need for control and with your history it’s no surprise that it’s lead to disordered eating as you seek to gain some control over your life.
I’m sorry that your diabetes team is failing you. It isn’t personal. The nhs doesn’t hate you. It’s just creaking and failing. Do you have anyone in your life who can advocate for you and go to appointments with you? Sometimes just having a friend with you gives you enough security to advocate for yourself or sometimes they need to speak for you. If you can’t think of anyone you can request to have a chaperone at any nhs appointment for any reason and as an abuse survivor it may be useful to have a third party present even if it’s not as an advocate.
Your blood glucose is not a measure of your self worth. I understand how it’s easy to get into that mindset (I live with an eating disorder, which is mostly under control but never fully absent) but it’s a lie.
Injecting up to 15 times a day will confuse your body and make it harder for you to stay in target. When dealing with disordered eating and self harm it’s helpful to look at harm reduction instead of perfection. When dealing with diabetes management perfection is impossible and being able to cope with variation is necessary. When you talk about highs what sort of numbers are you talking about? Above 7, above 10, above 14, above 20? You might not feel great above 14 but it is still a safe level in the moment. Would it be possible for you to establish a wider target zone so that you’re not punishing yourself if you are high but safe? Give yourself generous parameters. That way you can reduce the number of injections and start to see the wood for the trees. Injecting lots makes it hard to know which insulin is doing the job which makes it harder to manage long term.
We can’t give you specific advice about ratios etc but we can help you come up with strategies to give you a fighting chance of making life easier (not EASY but easier).
We’re here to listen. You have been badly hurt and are hurting. We can be witness that even if we can’t take the pain away.
spell
Well-Known Member
Whitney queen,I thought I was mental, apart from a few aspects you have just described me.
The NHS are total gobshite, offering only "one size fits all" treatment or help and not going the extra mile for anything not in their remit.
My last NHS psychologist just abandoned me half way through weeks of trying.
I get the NHS are struggling but not as much as us
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Sorry to hear you are having such a tough time again @Whitney 
And sorry you are finding it so hard to get the support you need.
Have you ever been offered a course in intensive diabetes management? Like DAFNE or a local equivalent?
There’s an online version called BERTIE which might help you, even though it lacks the conversation between participants.
It’s important to look after your whole self and especially your mental wellbeing.
If you get to feeling you are reaching the end of your capacity, do remember that the Samaritans are always available to talk with you, in complete confidence, for free. Call on 116 123
For more diabetes-specific support, you can call the DUK Helpline 9-6 Mon-Fri on 0345 123 2399
Or check out Mind, the national mental health charity
Have you been able to access counselling via IAPT? You may be able to self refer for some free sessions.
www.nhs.uk
And sorry you are finding it so hard to get the support you need.
Have you ever been offered a course in intensive diabetes management? Like DAFNE or a local equivalent?
There’s an online version called BERTIE which might help you, even though it lacks the conversation between participants.
It’s important to look after your whole self and especially your mental wellbeing.
If you get to feeling you are reaching the end of your capacity, do remember that the Samaritans are always available to talk with you, in complete confidence, for free. Call on 116 123
For more diabetes-specific support, you can call the DUK Helpline 9-6 Mon-Fri on 0345 123 2399
Or check out Mind, the national mental health charity
Have you been able to access counselling via IAPT? You may be able to self refer for some free sessions.
NHS talking therapies
How to access free psychological therapies (talking therapies) like cognitive behavioural therapy (CBT), counselling and guided self-help on the NHS.
www.nhs.uk
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Having high blood sugar isn’t you being a failure @Whitney *hugs* Type 1 is very hard and nobody - absolutely nobody - has perfect blood sugar all the time. There’s always something that can mess it up, eg stress,illness, hormones, etc etc.
It’s a total pain in the bum, and yes, it can get you down sometimes. I’ve got a virus and the last two days I’ve been literally constantly fighting highs. It’s so frustrating and, yes, it does cause extra stress. What I do is set myself a higher, more achievable target. For example, yesterday my blood sugar was stubbornly staying around 15 despite corrections and more basal. I ignored the Libre graph and just looked at the scan result (why look and see I’d been out of range all day - I knew that and was trying to sort it). I managed to get my blood sugar down to 13 and was pleased - yes, pleased not sad. I didn’t think about it being above target, I was just pleased it had come down finally. What I’m trying to say is to ease off a little. Don’t be so hard on yourself. xx
I’d also add that sometimes it’s better to remain a bit high than get into a rollercoaster of corrections, hypos, over-treating the hypo so shooting high, correcting, hypoing….you get the idea. It’s really easy to inadvertently get on that mad rollercoaster. I’ve done it myself and it’s a horrible feeling swinging high-low-high like that.
If you’re happy to post some of your blood sugar results here, you’ll get some suggestions. The foundation is being sure your basal is right. You then move on to your meal ratios. I sort those by taking one meal at a time and working on it by eating the same thing day after day for that meal until I’ve got a good idea of what ratio works. I then do the same thing for the next meal.
I honestly don’t think you’ll have Type 1 forever. There will be a cure. We’re so close. Keep going. You’re not alone. xx
It’s a total pain in the bum, and yes, it can get you down sometimes. I’ve got a virus and the last two days I’ve been literally constantly fighting highs. It’s so frustrating and, yes, it does cause extra stress. What I do is set myself a higher, more achievable target. For example, yesterday my blood sugar was stubbornly staying around 15 despite corrections and more basal. I ignored the Libre graph and just looked at the scan result (why look and see I’d been out of range all day - I knew that and was trying to sort it). I managed to get my blood sugar down to 13 and was pleased - yes, pleased not sad. I didn’t think about it being above target, I was just pleased it had come down finally. What I’m trying to say is to ease off a little. Don’t be so hard on yourself. xx
I’d also add that sometimes it’s better to remain a bit high than get into a rollercoaster of corrections, hypos, over-treating the hypo so shooting high, correcting, hypoing….you get the idea. It’s really easy to inadvertently get on that mad rollercoaster. I’ve done it myself and it’s a horrible feeling swinging high-low-high like that.
If you’re happy to post some of your blood sugar results here, you’ll get some suggestions. The foundation is being sure your basal is right. You then move on to your meal ratios. I sort those by taking one meal at a time and working on it by eating the same thing day after day for that meal until I’ve got a good idea of what ratio works. I then do the same thing for the next meal.
I honestly don’t think you’ll have Type 1 forever. There will be a cure. We’re so close. Keep going. You’re not alone. xx
Thanks everyone for the replies, I have meltdowns about disbetes every single time my bloods go high and since last November I’ve been 30% in target everyday if I eat anything, the team refuse to help me I can’t live with this anymore. It’s not like I’m sometimes out of range, I basically ALWAYS am and I’m injecting like ten times sometimes more everyday UNLESS I deliberately don’t eat, everyone tells me eating is good for energy but eating makes me angry, suicidal, hurt myself & have breakdowns over blood sugar levels & how awful it makes me feel (thirst, tiredness, dizzyness etc)
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
And you can't change to another team?
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- Type 1
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Sorry you are having such a difficult time @Whitney
Do please reach out to the DUK helpline.
They may be able to suggest other sources of support.
It sounds like you could really benefit from some psychological support, and more help all round
Hi. I'm sorry to hear about your difficulties. Do see if your local Mind can help. I do IT volunteer work for my local Mind and I know how good they can be. The NHS can vary a lot and many of us have come across both good and bad support including bad diet advice. I assume you are on Basal/Bolus regime? I have found that some of the rules such as ratios etc just don't work for me but do for others. Make sure you use your Basal as the backbone of your daily routine. I split mine and recently three ways but I'm not suggesting you do the same unless it works for you. Like you I find often the Bolus is just like water towards the end of the day which is why I do rely on the Basal doing it's work in the background. I assume you try to keep the carbs in your diet down and focus more on fats and proteins? Do you have a CGM such as Libre 2? If not do see if you can get one on prescription as your insulin issues justify it. I assume you are under the care of your local county diabetes team and not just the local surgery. I do hope you can find more local support.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
It’s extremely stressful when your blood sugar isn’t behaving or when it’s limiting your ability to eat properly @Whitney No wonder you’re upset.
You can improve things though. Obviously Xmas isn’t the time to start fussing with your diabetes routine, but the New Year is a good time for a new start.
1) So, do you wake up with ok blood sugar?
2) If you didn’t eat all day, would your blood sugar stay in range? If so, you’ve identified the issue: your basal is ok, but your boluses need work on. We can help make suggestions for that work.
I don’t think your current diabetes troubles are helping your mental health. If I could wave a magic wand and make your blood sugars ok, what stresses and anxieties would remain? You don’t have to answer that, but sometimes untangling the causes of stress can help you see the path out better. Of course, stress itself makes that harder to do, but it can be done. Do push for the support you need. Try MIND, try Young MIND, see if you can self-refer for counselling.
If you ever feel like you’re really not coping, remember the Samaritans are there and will listen. xx
Bloden
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- Type 1
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