Really getting down everything building on top of me worse of all my diabetes

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NeilGilbert

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Type 1
Hi sorry my name's Neil diagnosed March 30th 1980
Sorry for coming on here not many places you can go sites really not working I'm on 2 virgin sites in my back the only places left as I'm on insulin pump I removed a needle from my tum couldn't stop the bleed on also on blood thinners I bled for an hour lost just under a pint floor was a mess all my side was covered don't do it there any more. The sites on my back are ify too sometimes they work and sometimes they don't last week I was really struggling to get anything to work blood levels were off the metre 29+ with everything else I started to feel really low nothing I was doing made any difference I hadn't had anything to eat lots of water but still levels were increasing no ketones I hope no one else gets as low as I did I was in the frame of mind just to walk away leaving everything all I could think about was what would be happening to my body I just wanted to finish it I was on line chatting to works online help who cancelled my account and 10 minutes later there were to police officers knocking on my door making sure I was ok.
I'm now getting help at work as this is not over because my sites are so unpredictable I never know if they are going to work my insulin is now taking anywhere from 30mins to 4 hours to be absorbed my sugar levels when the site works are often about 8- 10 but when they don't the meter doesn't go higher enough and then I just fall apart it's already hitting me I've had an ulcer on my ankle Healed but now it's opening up and getting bigger just like the stress how close will I get next time as this I can't hide from I became a naturlist to get away it used to work but it's getting so hard now I'm scared what will happen if I lose it again. The other bad part is I'm not changing my cannula as often as I should I'm scared it's not going to work just like tonights I'm in bed blood 20 20 mins ago but I've but it back on the last cannula that's now been in 5 day as it works sorry for sharing my stress I. Still thinking it would be easier just to leave this has been going on for 6 years it's just now it's really hitting me so hard I'm the only one working it's getting impossible
 
@NeilGilbert A quick reply for now because it’s late but I’ll write more tomorrow. First of all, you’re not alone. We understand the strain of diabetes on top of everything else life throws at us.

How long have you had a pump? I’ve had mine 18 years and yes, I do find it hard to get good absorption from some areas. I know how frustrating that. What pump do you have? Have you tried a pump break and gone back on injections for a while.

If you’re struggling tonight, remember The Samaritans will listen:

https://www.samaritans.org/

Hold on there - there’s support for you. Things will get better.
 
Hi Neil.

So sorry you are feeling so low and struggling so badly with your diabetes. Please don't apologize for coming to the forum to offload how you are feeling and to seek help. This is a really important feature of the forum, because people here understand the frustrations and fears and stress and strain of managing diabetes day to day and we know how incredibly hard it is.
Firstly can I ask when you last spoke to your DSN or consultant? It seems to me like you need more clinical support.
Do you have pens to use to correct high levels when a site stops absorbing and you are frightened to insert a new cannula. I am guessing you will be less likely to bleed from a needle than a cannula.... but I may be mistaken about that. I have not used a pump myself, just Multiple Daily Injection (MDI)
Which pump are you using? Have you tried a different style of cannula for it if you are having problems with the current ones?
I assume you have Freestyle Libre or some other CGM which should help you to spot levels rising and take action before things go to high, but maybe you need to agree some sort of protocol with your DSN so that if levels get to say 20 you use a pen to inject a correction.

You say you bled a lot from the cannula. Did you apply pressure to stem the bleeding? I appreciate you are on blood thinners so perhaps the dose is a bit too high when you are bleeding so much from a cannula removal, so you may need to discuss that with your GP as it is important that you feel confident to change your cannulas, otherwise the sites will become damaged.

My advice would be to ring and leave a message for your DSN explaining just how stressed you are about everything, contact your GP to discuss lowering your blood thinning meds and explain the problems it is causing and ring the Diabetes UK helpline on 0345 123 2399 tomorrow during office hours to get some support.

If you break it down into small steps and do one thing at a time to get help, you will soon find that the mountain starts to look less imposing and more possible. I suffer with stress and depression and some days my perspective is totally out of kilter and everything seems impossible, but a few days later it has changed and I wonder what I was making such a fuss about and realise that I can deal with those problems that were totally impossible a few days before. I hope you can find a way to focus on one thing at a time and start walking towards some help and that will help you see the light.
 
First if all - thank you for your honesty, and for sharing your struggles with us. That’s a really big step, and such an important one. You are important. You matter. You deserve to be happy. Things can improve - and you can find a way through this.

Good to hear you are getting support from work, but do follow up on the suggestions to contact Samaritans or the Diabetes UK helpline that @Inka and @rebrascora have suggested. Especially when you feel you are losing it, and things are just getting too much.

Diabetes can be relentless and frustrating - and high and erratic BG levels are hard both physically and mentally, so you have the double whammy of frustrating or worrying levels combined with a lowered mood from the effect on your brain.

Do you have contact details for your hospital clinic or DSN? Please do try to get in contact with them - even if that means going to A&E, and be really honest with them about the crisis point you have reached recently, and the ongoing troubles with your infusion sites and how the pump is being difficult for you. The ulcer needs looking at too - don’t leave that. You might need antibiotics for the infection, and the longer it is left, the trickier it can be to treat.

I also wonder whether some sort of pump break might be helpful - so that you can get a more reliable supply of insulin for a while to stabilise things. You can always go back to insulin pump therapy later once things are a bit more settled.

Hang in there dude. We are rooting for you.
 
@NeilGilbert I hope you’re ok this morning. I was thinking about your excessive bleeding from your cannula site - have you mentioned that to your GP? I wonder whether your meds need adjusting or, simply, the issue is your cannulas. I’m not on blood thinners but I’ve had some ‘gushers’ removing cannulas from my stomach. They’re scary even when it’s smaller amounts of blood. I find my stomach bruises more easily too. You mention your back, but have you tried your thighs for cannula sites? They don’t hurt as much, they don’t bleed as much, and they’re my favourite site. I use the outer tops and the sides, and I pinch up when insert the cannula.

You have lots of options with your pump. You can change sites, change cannulas, take a pump break, or even use a tailored hybrid regime where you take some basal insulin by injection to help buffer you against highs from pump failures.

But, if your pump is really getting you down, then maybe a break would be best for now. I’ve had two or three breaks and I found them a relief. It let out some of the stress and pressure associated with the sites. People don’t always realise how hard it is struggling with rubbishy cannula sites.

Please let us know how you’re doing. There are lots of people here who’ve had struggles. You’re really not alone and you have our support because we understand and we care. Look after yourself.
 
Hi thank you for your reply the cannula is working now good job I left the old one in got me through the night.
I'm waiting to hear from kings hospital in London about a needle to the stomach lining I think my problem is the stress of waiting?
I use my back now as my legs don't absorb anything now 20 years of injecting with what used to look like sewing needles and my glass and stainless steel syringe as I thank goodness went onto disposable syringe later. I use my back as all the other sites just don't work anymore I remember a diabetic nurse seeing me once and told me if I stopped injecting into my legs the bumps would go and I replied I haven't injected there for 20 years now they are forming calcium deposits my right thigh feels like there is a boney finger inside the lump not nice my tum used to be my favourite no need to drop your trousers so allowed injecting anywhere but I had to stop as it started to break down I was amazed I reached 50 I never thought I would.

I'm on quite a large dose being large in height 6 feet 7 inches tall I do a fairly active job and am able to to reduce my insulin sometimes to almost nothing still background insulin and even that is reduced.

I have thought about coming of pump it's just lack of sites which is why I was put on pump as everytime I inject react to the needle forming hard areas like my arms.
I'm feeling much better I've learned to talk which isn't something I do but I'm learning thank you
 
Great to hear back from you @NeilGilbert and good to hear your cannula is working now. Absorption issues are really stressful and so very, very frustrating. I wish there was some easy answer. I asked my consultant about it and whether pumps caused more or less issues than injections but she didn’t want to commit to an answer. I wish there was more research about what’s best (in all ways, not only pump v. MDI, eg insulin type etc.)

Is the needle in the stomach lining you’re talking about, the Diaport? I think @Pattidevans and/or @trophywench know someone who has that. I hope you get to see the hospital team quickly and that they can help. I imagine getting the absorption improved would be a big weight off you.
 
So sorry to hear about your troubles , i wish i could help but ive had a lot of issues myself recently but what i would say i that on this forum there are loads of posters that are very experienced with similar problems who could give you very sound advice , good luck and i hope you feel better soon
 
I am sorry to hear that you have been feeling this way, and also it is completely understandable. There is no rest from diabetes, and how our levels impact our moods makes it worse still.
I am sending you so much love and healing, we are all here for you. The world is better for you in it.

Have you asked about inhalable insulin? I know it's not big in the UK but if anyone is a candidate it must be yourself on the blood thinners. There must be another way, if injections are suitable and it doesn't sound that the pump is ether.

Take care. And please reach out to any support you need to.
 
Hi @NeilGilbert, I'm glad you've found us

I’m sorry you are having such a tough time. It is a relentless job dealing with diabetes as well as juggling everything else.

Have you tried different cannula types, steel ones in place of Teflon or different length cannulas? I’m struggling with poor absorption, cannula failure & very limited sites after years using & reusing long harpoon needles & 24 years of pump cannulas. It is a huge worry trying to find an area that absorbs every 3 days. I suppose we are hitting new issues of insulin absorption after injecting for longer years.

There is Medtronic iport I realise that’s for MDI but maybe an option to ensure insulin delivery.

i-Port Advance™ injection Port | Medtronic Diabetes

Less insertions, less worries. Discover the new i-Port Advance™ injection port, designed to make multiple daily injections more comfortable.
mmc.medtronic-diabetes.co.uk mmc.medtronic-diabetes.co.uk

or as @Inka mentions the Accu Chek Diaport

I hope you are seen quickly by your team and are helped to get as reliable absorption as possible. Wishing you well.
 
PhoebeC said:
Have you asked about inhalable insulin?
Click to expand...
I am not sure if Afrezza is approved in the UK and, even if it is, it is only ultra fast acting (much faster than any injected insulin) so a basal will still need to be injected
 
helli said:
I am not sure if Afrezza is approved in the UK and, even if it is, it is only ultra fast acting (much faster than any injected insulin) so a basal will still need to be injected
Click to expand...
Affrezza is not approved in the UK. And has a troubled history, including being dropped by the companies that took it on.

It also seems to unfortunately attract quite hard-sell posts whenever it is mentioned (or at least it did a few years back)
 
NeilGilbert said:
Hi thank you for your reply the cannula is working now good job I left the old one in got me through the night.
I'm waiting to hear from kings hospital in London about a needle to the stomach lining I think my problem is the stress of waiting?
I use my back now as my legs don't absorb anything now 20 years of injecting with what used to look like sewing needles and my glass and stainless steel syringe as I thank goodness went onto disposable syringe later. I use my back as all the other sites just don't work anymore I remember a diabetic nurse seeing me once and told me if I stopped injecting into my legs the bumps would go and I replied I haven't injected there for 20 years now they are forming calcium deposits my right thigh feels like there is a boney finger inside the lump not nice my tum used to be my favourite no need to drop your trousers so allowed injecting anywhere but I had to stop as it started to break down I was amazed I reached 50 I never thought I would.

I'm on quite a large dose being large in height 6 feet 7 inches tall I do a fairly active job and am able to to reduce my insulin sometimes to almost nothing still background insulin and even that is reduced.

I have thought about coming of pump it's just lack of sites which is why I was put on pump as everytime I inject react to the needle forming hard areas like my arms.
I'm feeling much better I've learned to talk which isn't something I do but I'm learning thank you
Click to expand...

Have you tried sides of buttocks, recently starting using them after 10 years of pumping, worth try mate if haven't tried already.
 
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