I have had T1 for 27 years now and have recently developed orthostatic hypotension, it’s not too bad apparantly because I haven’t passed out but it’s making life pretty difficult. I also have peripheral neuropathy that is terribly painful 24/7 and gastroparesis, controlling blood sugars is a constant mind consuming war that I never seem to win. My blood pressure is making me feel like my blood sugar is low all of the time, I have been testing up to 10 times a day because I can’t tell. I just feel bad every day, but I keep working because I’m afraid if I stop the deterioration will speed up. Getting out of bed and to work five days a week is quite challenging. I know that it could be worse, I could be passing out every time I stand up, but I’m really struggling with it all lately. I feel like I have to be strong for my loved ones but at the same time they have no idea what it’s like. I could use some understanding…
I hear you - 31 years for me and dealing with my first beginning complications this year. My new endo called out that I had Stage 2 kidney disease, which is not at a critical point but I needed to really reduce my sodium intake. Let me tell ya - that stuff is is almost everything, and it adds up fast! Apparently my previous endo didn’t feel it was important to mention that.
I have neuropathy too - I’m OK to walk and everything, but this is the first time I’ve started feeling like it limits me somewhat. That prickly feeling during the night wakes me up and my hands are numby sometimes. But at least I have pretty good sensation still, so that’s the plus side.
Chronic diseases that are degenerative are so difficult because it’s not like things will get better. At best, we try to hold things where they are. Are you seeing a counselor? It can be helpful to talk through some of the feelings of grief and anger that you might be feeling. I think I’ll make an appointment soon myself.
I also think it’s important for T1’s with complications to reach out for support like you did, so I congratulate you on doing that. Too often I hear newer T1’s with an attitude of “nothing’s going to happen to me because I take care of myself”, but the reality is that most of us will deal with things at some point down the road, and we need to be there for each other instead of writing each other off as some kind of failure. We need to hear from each other. It’s a 24/7 job with no breaks, and we are champions each and every day for keeping motivated after sooooo long. We just have to keep up the fight for as long as we have, enjoy our lives, and educate others along the way.
hi Jana, I am so sorry to hear about your situation. I have a touch of “postural hypotension” which for me comes and goes. Found out when I got up and put my head through a kitchen cabinet one evening. I never ever get up fast anymore; in the mornings it’s a sit up, rest, get up slow, rest movement. One thing that helps me is to tense my leg and then abdomen muscles helping to keep the pressure at my head good for a few seconds. I get an immediate ear ringing when it happens to me and then I remember to tense up and sit back down if necessary.
hoping it eases up for you a little. it’s worse for me when I am a little dehydrated.
I stopped thinking about this as a “war” many years ago because, as wars go, it not something you can win. hang in, and talk about it a lot, I think it’s helpful to get feedback and support.
Can complications improve if you keep your sugars really tight for a period of time?
I would say it depends on the complication. most stabilize when you keep your bs tight, some get better. are you thinking about something in particular?
Nothing in particular, really. I was curious because I don’t have complications now, but my eyes deteriorated a bit in the beginning of my pregnancy. I got my A1C down to 5.4 and kept it there for the remainder of my pregnancy and my eyes completely went back to normal. Unfortunately, I haven’t been able to maintain such a low A1C! It’s really hard work. I guess I’d just like to hope that complications can improve if/when they develop.
@Jenpsu2 eyes can be tough. if you have retinopathy it won’t go away with tight blood sugar control it will only stabilize. other stuff may tend to go away. 5.4 is really awesome if you didn’t have a lot of lows. this kind of thing does not need to give you anxiety, just go for your regular checkups.
i think it’s important though, to have a few specialists on your team - a retina specialist and at least 1 retina exam per year in particular is a really good idea, in my opinion. good luck!
As one who has recently been experiencing A LOT of orthostatic hypotension, I hear you. It's "the pits". It's hard for me to tell if the low BP upon standing is autonomic dysfunction after 29 years of type 1, or because I've recently lost 29 pounds, or if, as Joe said it might be related to hydration. I tend to get pretty dry in the winter. Regardless of the cause, though, feeling like you're going to pass-out or fall down is awful. Hang in there! Joe gives some excellent advice on tightening leg and abdominal muscles to maintain BP (thanks Joe!). I'll be sure to try that the next time I "see stars" if, of course, I remember while the blood that should be in my brain, is hanging out with my feet... I wish I could say something that would make it better - this blasted disease is just hard, and then we get high or low blood sugar, to deal with, too! Hang in there Jana - you're in good company in this forum!
Oh I feel tearful reading this Jana. I have not participated in online forums much but need to more often. I understand how you feel I think. I have had Type 1 for 38 years since age 9. My complications are not severe but plentiful. I take SO many meds each day. 9 kinds of oral tablets plus fish oil and I literally take a caffeine pill in the morning just to be alive enough to get anything done or go to work. Then creams, inhalers, injections (not in that order!! LOL), blood tests … I feel I am putting something in every orifice. I have chronic depression and anxiety since childhood and fibromyalgia. Mild retinopathy since pregnancy 26 years ago, mild neuropathy and hot feet at night. I have just discovered an area of what we are tentatively calling fat necrosis on my back which my husband has known was there for years and thought I knew about it. Everything is scary. I already only manage part time work. I do needs assessments for people with disabilities … including people who have lost limbs or are in end stage renal failure from diabetes … Not helpful. I know.
It’s all the small parts of it which add up together … my self care regime is so time consuming and I get confused and lose track and miss things … I get oral thrush from asthma preventers so the GP says rinse your mouth out after each dose or take it before a meal. REALLY!!! Do you realise everything else I need to do before, during and after each meal!!! Check blood, count carbs, calculate corrections, take insulin, swallow pills … oh, that’s after making the meal and then cleaning up!!!
Sorry for the rant. I am so full of emotion, frustration and fear. I have not had a community of people who understand. My husband of 5 years just feels helpless and stressed by my sharing. I am the carer in our relationship. I am the strong one. … I feel less and less beautiful each of the last few years … though perhaps many or most women feel this in their late 40s. I keep having visions of myself misshapen, discoloured, swollen and immobile (visions of some of the clients I have assessed). Oh my word. I need a new job! LOL
I hope I am not adding to your distress Jana, by sharing my worst fears. BUt I can certainly relate and thanks so much for voicing your feelings and experience. I need to participate in these forums more and I think it’s time for some counselling.
Arohanui (much love in the Maori language - I am in New Zealand).
Thank you all for responding:) I also have a slew of other diagnoses along with what I mentioned before…it would take all day for me to list them. It’s nice to know that there are other people out there feeling like I do (not to say that I want anyone to feel this way), I’ve only known a few T1 diabetics in my life and unfortunately They passed away from complications. It’s so hard to stay positive all the time, I don’t want to scare anyone newly diagnosed, but my experience living in small towns most of my life has been pretty negative. It just recently started to really make me depressed and I am going to see a counselor. I have been depressed about it all many times in my life and have always been able to pick myself up and carry on with the day to day, but lately I’m just so tired of it… Like Arohanui said, I am also the strong one in the family when it comes to health problems and it’s so hard to even talk to them about it, I don’t want to scare them. Sometimes it’s really frusterating that people think that diabetes is so easy to manage, like insulin is a cure-all or something, when for some people it is impossible. I think I have tried everything, no matter what I do I get unexpected highs and lows. I don’t think my endo knows what to say about it, she seems overwhelmed too. Thank you all for letting me vent, it’s so nice that someone understands.
This is my first time participating in a forum. And I joined because I can relate to the struggles we all face being strong and tough each and every day of our lives.
I have had diabetes for 48 years. I am currently 54 yrs. old. I have had relatively mild complications along the way although in 1989 I had extensive laser for retinopathy and then a vitrectomy and then a cataract implant in the same eye. I’ve also dealt with depression (sometimes severe) on and off since my 20’s. Recently however, my eyesight has gotten worse (glaucoma and macular edema) and frankly I am afraid of going blind, not seeing my children graduate from college and not seeing them walk down the aisle to wed.
But I try to keep informed and learn whatever I can about current research, clinical trials and keeping healthy. Meditation and Yoga help a lot. I now try to juice my lunches and find it helps with gastroparesis and my blood sugars. There are tons of recipes online. I’m also trying to cut out all processed carbs and carbs in general and that is helping to keep me on less insulin and keeping my BS better. I do fall off the wagon though and refuse to give up chocolate!
My salvation is exercise. I don’t know if those of you with orthostatic hypotension can exercise? You all are to be commended for hanging in there and being strong and not giving up. I think we all deserve to feel sorry for ourselves every once in a while and I agree with the others that psychotherapy can help. Still no one knows what its like but those of us who live it everyday. Be kind to yourself…
I have had T1 for 45 years and was doing fine until I was given Cipro & Tequin. Two very strong antibiotics called fluoroquinolones in 2004.
Since then, I have had chronic tendon/joint pain and chronic fatigue, gastrointestinal problems and severe neuropathy along with many other issues.
If you are experiencing weird things like this happening to your body for no apparent reason, please look up Fluoroquinolone Toxcicty.
Cipro, Levaquin and Avelox are the most prescribed.
I am a mom and one of my sons has had T1D since age 3… He was diagnosed the year that the DCCT study was published. I was “all over it” so to speak and have stayed very informed for the past 22 years. I have hyperinsulinemia which is not nearly as hard as T1D although I am all too familiar with severe low BGs (in the 30s) and hypotension.
I admit to having great fears about complications for my son. All his endos over the years have suggested that super tight control and low A1c’s are almost always associated with too many lows and this is not good for the brain. Our brains basically need 2 essentials: glucose and oxygen. This is a simplification of course, but without these 2 elements, it’s a lights-out situation. To ensure glucose to the brain with T1D, insulin is an absolute requirement. It’s expensive and without the basics to manage T1D; well, we know what this means.
We worked super hard when my son was young to test and track everything. Finally the MDs told us we would never find a pattern or an answer to BG variability. That was not easy to hear.
For the sake of privacy I won’t describe the complications my son is experiencing due to T1D but it is helpful for me to read the comments in this forum because I don’t feel so alone in my worries. So many many times I have wanted to scream at the ignorance and callousness I hear from others who do not understand this disease.
T1D is an “endocrine” disorder (or better-said a neuro-endocrine disorder) which may or may not be considered autoimmune. On the other hand, it manifests as a vascular disease throughout the entire body. And THIS is why, as a mother, I worry so much. I know what this means.
I hope it is OK for me to contribute and read within this forum even though I do not have T1D - it helps me a lot to see others speaking the truths about T1D because it is not all about willpower and discipline.
My biggest worry is paying for healthcare for my son, or assisting him to pay. In the US it’s not a “given” that assistance will be provided or that a job-with-benefits is available for a lifetime. And I know this is true for those who write in this forum who have the additional difficulties of multiple chronic conditions. I work in healthcare and I see these facts every day.
I wish you the best and know that just moving forward helps (me). T1 43 years and have been through several complications and of course they are all “related” to diabetes when asked “WHY”?
I just recently had to have a stent placed in my LAD — really so much for all that walking and working out! Forget about stress tests as they won’t tell anything about blockages – I think at 50 you should get a nuclear stress test.
Many days I get depressed about the number of neds I take and such. Like @angivan I too was diagnosed with CRF stage 1-2 , but I see a kidney specialist and while I have friends who have have successful kidney transplants, I will not sit on a dialysis machine … but that is my selfish choice. It’s really the only thing I did NOT want to happen.
I wish you all the best in your trials of T1.
Thank you all so much for your posts. My greatest fear of complications is my eyes, I’m pretty terrified of becoming blind. So far my eyes show no signs of retinopathy, I also have good kidney function and I feel so lucky for that. I am so sorry for everyone else dealing with this too, it’s pretty tough.
@Boston- I can’t imagine the worry you must have, I’m sorry for your son. As someone who’s never had “control” of my T1 my complications have just now gotten so overwhelming. I was pretty hard on my body when I was younger, I always figured that I might as well live it up while I could… I wish now that I had tried harder then, I don’t know if things would be different but I do wonder. If there’s anything I can do to help I would love to.
@ScottT- I wish you the best with your kidneys, I don’t have any experience in that department, but I do think about it a lot. I don’t think you are selfish, not many understand the pain and frusteration we deal with for such long periods of time. I think that sometimes we have to cut ourselves some slack.
@MichelleP- You’re right about exercise, if I just walk to the mailbox and back I usually have to stand against something or sit and catch my breath for a few minutes. I do miss being able to exercise though, it sure helps with stress. I hope your eyes hang in there for you.
I don’t know if I could qualify, but I have been thinking about an islet cell transplant or pancreas transplant. They are both kind of dangerous, but if we could swap T1 roller coaster for different meds and problems should we think about it? My sister has begged me to consider it. I would love thoughts on that too:)
This thread confirms my belief that I am lucky and blessed. I was not diagnosed until age 45, and though I know it is not impossible for me to develop complications, it is probably less likely at least not until I am quite old.
I read posts and meet those in support groups who were diagnosed as kids, or adolescents. Believe me, when friends say they feel “sorry” for me, or ask “how can you change your life so radically at your age (40’s)?” I tell them I thank my lucky stars diabetes happened to me later in life and not when I was younger. And thank God it happened to me and not my daughter.
To those who are long-term T1’s you have my respect, for sure!
Jana best of luck to you and to All who responded to near post!
To Vhm1 … I have not kept up with ALL of the research but I believe there are some of who are genetically ‘lucky’ not to get severe complications for many years after diagnosis. I am suspicious of doctors always pressing us to have near perfect bloods. The fact is that there is nothing else they can do … so they focus on what they CAN influence - trying to change people’s behaviour. People can get complications even if their bloods are great. Don’t get me wrong. I must stress I am NOT arguing against working towards good ‘control’. There are obvious benefits … not the least of which is feeling well and having energy!! I have just wondered over these many years about the role of ‘control’. Who has it? Us or them? It’s quite an ask to feel like we have to follow instructions, create screeds of records of our intimate functions, what we eat, when, how much, how well we did the math in calculating carbs, if we forgot, how we’ve been emotionally, could that have affected our ‘control’ … Having T1 is a life of being monitored … by professionals, by family, by friends, by members of the public … all well meaning of course … as they question if you should really eat that … (Hmmm … I am onto another topic here. Aren’t I?)
PS In New Zealand we spell things a little differently. Behaviour. Counsellor. Colour. Not spelling mistakes. BTW I am an American. Moved here 30 years ago.
Jana, I can suggest reading one book, you may relate tot he author it it may help.