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Feeling Down

SHESCOOBY

SHESCOOBY

Well-Known Member
Messages
48
Location
United Kingdom
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Liars
Hi all I'm a T1 Have been for over 34yrs now, my brother was also a T1, he was 2 when he was diagnosed and I was 11. He was 3yrs older than me. It wasn't so bad for me as I grew up with the same kind of food regime as my brother, never had sugar in tea or coffee or had sugary drinks mum always used either sweetener or nothing at all. I watch my brother before I was diagnosed with dealing with hypos and mum dealing with his hypos etc!
Anyway unfortunately my brother died 8yrs ago aged just 39! He had complications with his diabetes however he had a massive bleed on the brain and died all very sudden.
I'm now feeling down about my health! Had 10 ops on right eye after I had my son 10yr ago as had bleed at back of eye then retina detachments then lazer treatment on both eyes. Have stage 3 kidney disease so pretty stable at mo! I've had hiatus hernias where they've had to take part of my stomach away also found out my esophagus doesn't work at all so suffer with chronic indigestion and reflux, they want to do a bypass which will stop the acid reflux, however bypass for a type 1 is not recommended due to the capacity of the intestines and causes lots of hypos, just had enough as my hba1c is thru the roof 98!!! due to stressing and in a lot of pain I feel like I'm going round in circles fighting in keeping sugars down suffering with pain grrrrr. 34 yrs of being a T1 is certainly taking its toll, I'm on the list for a pump however they want me to get my Hba1c down! Which I'm trying so hard I'm testing my blood 7-8 times a day! Just feeling low about it all now! It's the banging my head against a brick wall!!!! Sorry to rant just I know all you fellow diabetics out there sometimes know how I feel
 
I am so sorry tohear of your troubles, especially the death of your brother. I am sure that is still so hard to deal with on so many levels.
I am not t1, so cannot comment on your health, but didn't want to read and run. I am sure that others will come along that know a great deal.more than I do.
 
Kentoldlady1 said:
I am so sorry tohear of your troubles, especially the death of your brother. I am sure that is still so hard to deal with on so many levels.
I am not t1, so cannot comment on your health, but didn't want to read and run. I am sure that others will come along that know a great deal.more than I do.
Click to expand...

Aww thank you xx
 
Hi @SHESCOOBY - Boy, you've had a bumpy ride with this thing.

I'm not T1, so can't really comment on how you might address any of those issues. My OH has a longstanding hiatus hernia which bothers him from time to time, although in recent years it has improved. When i's in the mix, it's a horrid way to be.

I do hope you're feeling better and brighter soon.

My post will bump your thread up the Recent Posts lists, as folks come onto the forum during the evening.
 
Hey.. I cant imagine being in ur shoes, but I know that when im scared/depressed and such its impossible for me to get my BG down. Im feeling its kind of hard for me to give advice to somebody whos been dealing with t1 and many other things for so much longer than I have, but I just wanted to tell u that u r not alone, never feel alone... Hope u get better soon and please let us know how u doing later as well. X
 
Aww thank you all, your kind words mean a lot.
I always tell myself when I'm down that there are people worst off than me but so much is going wrong them words are not helping so much now!
I've always been the one to look after my diabetes as I watched my brother suffer not because he didn't look after himself it was later on he suffered so many things going wrong for him just back when we were young diabetes wasn't as popular as it is today and not a great deal of support back then as there is now. Now I see myself down that road and as said before it's taken it's toll no matter how well I controlled it! I guess it's the luck of the draw huh, I'm fighting for a pump to help me manage my diabetes better but that's a fight in itself as always comes back to funding!
Again thanks for all your support and kind words they do mean a lot xx
 
Like others, I am feeling humbled by your story. I cannot give advice but I just wanted to give you a hug and send positive vibes. Fingers crossed that you get the pump asap. Best wishes.
 
SHESCOOBY said:
I'm on the list for a pump however they want me to get my Hba1c down!
Click to expand...

I'm not really sure why you've been told to get hba1c down before being allowed on a pump. One of the things that can make you elligble for a pump is inability to get hba1c under 8.5% (yours is over 11%) despite careful management on mdi.

Pumping might also offer you a few more option for how to deal with gastro issues caused by the bypass.

Are you on a waiting list for a pump as in you are just waiting for a start up appointment? Or is it that funding has not been granted? If you don't have funding confirmed you should contact www.inputdiabetes.org.uk for assistance.
 
I got diabetes aged 3 in 1979 and was given a 50/50 chance of living. I got through that and remember the old glass needles and many visits to hospital and found out that it is like being prisoner in your own body, as no one can see inside of you. My problems really started when i went to the comp as lunch time was 30/40 mins later that i was used too. So hypo a day normally happened and as i was the only kid with diabetes people would look at me and ask why i was allowed to drink in class, all the time the diabetes was destroying my body. At the age of 17 i was rushed into hospital with high keytones that is when i was moved to 4 injections a day, about 6 months later i was having a eye exam and was sent to the hospital and told i needed lazer treatment to save my sight this is where depression started for me. I was just about to turn 18 and had all these thing going through my head, over the next 3 years i had lazer treatment on both eyes(held the record for most lazer treatment at the hospital and had to do the last 3 sessions asleep) but it did not work and i had a further 6 ops. Just past mt 21st i had to go to sunderland and was told i would need a new kidney by the time i was 30, i broke down in tears 3 years fighting one thing then this come along my mental health has good days and bad days. I need ops for carpel tunnel on both hands and a op on my elbow as well as hospital visits and appointment. I had some luck as my renal function stayed the same for about 8 year(28-36) in this time i change my care from north Durham to Newcastle i only wish that i had done it years ago. I was put on the transplant list in dec 2013 and got the call to go to the freeman in April 2015 for a SPK transplant due to waiting for the organs to arrive it was April 17th my sons birthday. I remember going down for the transplant at 5am just after 12 i was on ITU, over the next year i was in and out of hospital. Then things settled down, the transplant was working well but the damage done to my body was brought to light, my nerve ending were shot to pieces and i was trying to bring my children up by my self and if i am honest they are the only reason that i keep going. People think that having a transplant will solve all the problems but it does not, you think how you got the organs. the toll its put on your family and all the help you get from the hospital. What i am trying to say is diabetes is a evil illness which cause depression, heartache and pain but if you give in it has won and i intend to see my children grow up. this is a brief outline of what i and many diabetics go through that people do not see.
 
SHESCOOBY said:
Hi all I'm a T1 Have been for over 34yrs now, my brother was also a T1, he was 2 when he was diagnosed and I was 11. He was 3yrs older than me. It wasn't so bad for me as I grew up with the same kind of food regime as my brother, never had sugar in tea or coffee or had sugary drinks mum always used either sweetener or nothing at all. I watch my brother before I was diagnosed with dealing with hypos and mum dealing with his hypos etc!
Anyway unfortunately my brother died 8yrs ago aged just 39! He had complications with his diabetes however he had a massive bleed on the brain and died all very sudden.
I'm now feeling down about my health! Had 10 ops on right eye after I had my son 10yr ago as had bleed at back of eye then retina detachments then lazer treatment on both eyes. Have stage 3 kidney disease so pretty stable at mo! I've had hiatus hernias where they've had to take part of my stomach away also found out my esophagus doesn't work at all so suffer with chronic indigestion and reflux, they want to do a bypass which will stop the acid reflux, however bypass for a type 1 is not recommended due to the capacity of the intestines and causes lots of hypos, just had enough as my hba1c is thru the roof 98!!! due to stressing and in a lot of pain I feel like I'm going round in circles fighting in keeping sugars down suffering with pain grrrrr. 34 yrs of being a T1 is certainly taking its toll, I'm on the list for a pump however they want me to get my Hba1c down! Which I'm trying so hard I'm testing my blood 7-8 times a day! Just feeling low about it all now! It's the banging my head against a brick wall!!!! Sorry to rant just I know all you fellow diabetics out there sometimes know how I feel
Click to expand...
While I'm reading your post I'm thinking ... you have every reason to feel down and every right to have a rant!
I have multiple health problems but they seem to pale into insignificance reading your post.
I hope and pray you can stay strong and somehow get on top of all this.
 
Hi @SHESCOOBY I agree with @catapillar in regards to your team setting you up with an unrealistic target to get a pump, you should automatically qualify for one, the benefits in terms of micro control and in depth analysis are huge, so keep pushing your team, I have to be honest once i'd made my mind up for one I really dug my heels in so you have to be pretty assertive with your team. What helped me was getting my DSN on my side, she was great and got me pumping without her I would of struggled so try and aim to get yours on your side.

I am only 5 years in and well aware of what life can be like if I cannot keep on the tightrope, what I have learned though is how much stress and hormones can impact on my control, I exercise more to keep stress levels down and each month I fight the hormonal war with my body and increased insulin resistance. I would thoroughly recommend getting 'Think like a pancreas' to help you along, also if you have done the Dose Adjustment for Normal Eating course, then see if you can get onto one, it's so useful and also good to connect with other type 1's too. Can you afford to try the Libre sensor ? It would cut down on the numerous tests but it's also useful as you can download the results and send them by email to your team to discuss patterns with them.

Feel free to PM me if you need to off load too x
 
I just want to send a big hug and tell you I do understand
keep fighting !!
xx
 
send you a virtual hug too... so much to fight with you have... :( ... maybe you could count your carbs to a little lower level and slowly get your numbers down/lower, so that you still have some control ...just try a fixed number of carbs in every meal and slowly go a few grams lower daily over some weeks , but still have the other eye open to see if you get too low, I know it is so difficult to you type 1´s that also very easily go to low and hypo....
 
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Shescooby that is the main problem getting a pump is funding but the problem is that in the long run a pump works out cheaper! The problem is finding staff to do the pump introduction( not that the goverment will say) you have choices you can contact PALS and ask for them to set a meeting up with funding team, they dont like this. Or as i did i was started on my pump in North Durham hospital and after 6 months the could not get my BG under control so i went to my GP and asked if i could see someone at Newcastle. North Durham were not happy about this and sent a a4 sheet of paper with my problems(i have 3 bulging files at Durham) I was an hour on my first visit with the doctor could not believe how bad i had been treated. So i had to go back the next week for another Hour, then within 2 weeks my new doctor got my BG under control and said he either i could go back to Durham or stay with him, i said i staying here. The point is the bigger the hospital the better chance of getting a pump as most diabetes clinic have a special pump service and also a diabetic doctor on call 24 hours a day. The other way also is contact your local MP and make them aware of the problems that you are having because MP like nothing better than getting their picture in the paper saying that they helped you get your pump. Good luck and do not back down it is your right to have the best treatment they can offer.
 
Just wanted to say thank you all for all your advice and virtual hugs it's very kind of you all! It's funny how your own family sometime don't understand what your going thru and how hard it can be! I will be chasing all that I need to chase and am changing the way I do things checking every carb and counting my units etc I will keep you all updated on how I get on! So watch this space! Thanks again all x
 
@SHESCOOBY your experience really puts things into perspective.

I'm T2 so don't have practical advice.

Concerning the pump, that does sound strange and I hope you will be able to get it soon.

I'm in America. Some time back I hired a young man in his mid-20s to be the production manager for the small business that I run. I will call him Joe (not his real name). He was a good fit for the job, and he happened to be T1. Until I hired him he had not benefitted from a good health insurance, but unlike many American small businesses, we have decided we cannot in all conscience run a business if it does not provide health insurance. In America there is no government-provided universal health insurance for working-age people, unless they are poor.

I knew absolutely nothing about diabetes. Joe was great at his job, but he did a couple of times tell me he was having trouble getting his condition under control and was now able to consult a proper medical team to try to solve the issue. A few weeks later I saw him adjusting some settings on a small box he had strapped near his waist. Joe told me it was an insulin pump and had changed his life completely. Joe was having a tough time otherwise: his Dad had just passed away from celiac disease. His mother's employer didn't even give her time off for mourning, or for the funeral (we gave Joe 4 weeks of paid time off, i.e. much better than what his mother got).

That was about 14 years ago. Joe has moved on to another company (which also has a good health insurance). I don't understand why something like getting a pump can be such a struggle. As you can see, it is hard in this country too, unless you have good health insurance which tens of millions of people don't have. It makes no sense. Joe didn't deserve to be without an insulin pump, and you don't deserve such "penny-wise, pound-foolish" treatment either.

Best wishes -- I am hoping the best for you.
 
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