20 year struggles with Diabetes

Hi , l am a 39 year old male who has struggled with Type 1 for nearly 21 years. My life has became a terrible struggle and feel my healthcare 'professionals ' do not understand and give me little advice to help ' me '
I am 21 stone and every bone in my body aches 24 hours a day with my knees and feet particularly painful. My stomach is massive and I look 9 months pregnant with going to the toilet a dreadful experience. My muscles in my side keep pulling which is so painful. My groin is sharp and jolts at times when lifting leg. Lower back pain excruiating especially if I stand longer than 10 minutes. I have suffered mental health decline through the years and no longer like being in company yet I used to be the life and soul. I suffer terrible panic attacks and my confidence is shot. My concentation and memory is poor and I no longer work yet I used to be a senior sales manager. My HbA1C is 7.2
I try walking as my exercise however leaves me utterly exhausted.
Life is poor and I am no longer in control.
What can I do?

I suggest a CGM. I have had diabetes for 25 years. I have a lot of aches and pains but then that could be from being 47. My CGM really changed my life. My a1cs went from hovering at 7% down to 5.9% on my last test.
I also feel better. Weight loss will help you too, it is tough when you are depressed and it hurts to move, but movement will feel better in the long run.
Also we tend to over eat when we are unhappy.
Exercise can change your mood. Maybe swimming can work for you.
But really what you need is a new doctor. one who specializes in diabetes. Someone who can encourage you to get things on track.
My CGM keeps me aware of not just my sugars but also my intake of calories.

You need to decide whether you are worth fighting for. Identify what you value and use it to motivate yourself.

Diabetes is a life-long battle. It never stops. You never get a vacation. I don't like to use absolutest terms, like "never," but in this case it applies.

Doctors aren't going to fix you. You've been at this long enough to realize is that your interest and follow-through are the only thing that counts.

If you want to change direction and make a new commitment, I suggest writing things down. Putting them on the calendar. Find something to measure, like waking glucose, and record it. Once I start to measure something, I start to take an interest in positively effecting the outcome.

You could do lots of things to inform yourself. Find something that you want to improve and work on that. Don't try to take on everything at once.

Diabetes and BG control is mostly a head game and requires persistence. If you need to, talk with a therapist or good friend about what you'd like to do. It can help if someone can give you assistance in keeping you in the game.

You gotta move. Somehow, someway. I understand that there's a piece of gym equipment that allows the user to essentially "pedal" a bike with his arms. Just starting on one thing is a huge step.

I once took a week long diabetes class at a local university medical school. I learned a lot and those skills formed the basis for what I do now. It also helps to engage, in the real world, with other people with diabetes.

I've been as high as 8.5% A1c and was @ the low 7% range for a few years. I hated how I felt, either fighting off a low or mud-brained greasy-feeling hyperglycemia.

This is a big project. Just get started and chip away at it. You can do this only if you decide to. Good luck.

Great words from a great man!
I can only agree with Terry!

I’m sorry to hear of your struggles. Have you considered it may not just be the diabetes that is making you so ill? I had to give up gluten 18 years ago. My overall health improved a lot but it took time. Many diabetics have a gluten problem and it does not just effect digestion, it can cause arthritis like symptoms, rashes, difficulty maintaining a healthy weight, depression, anxiety, etc. I know thinking about another diet related illness is no fun, I’m struggling to count carbs after being gluten free so long but if I want to live a decent quality of life I know I’m going to have to learn to deal with the diabetes now too.

Giggs, what others have said so far is spot on. I'll add this to it: The tragedy of any situation like this is that, when you need to get moving and take action the most, it is also the absolute most difficult -- as in effort, willpower, suffering, etc. -- it will ever be to take action.

The higher you let that mountain build, the harder it is to climb it.

BUT! You must. You have to. And as others have said, the rewards are immeasurable.

The fact you came here, posted, and reached out for help is a very positive sign.

Here's what I think you need to do: Set aside the multitude of issues you're trying to deal with, and focus on one thing first. Just one. Set a reasonable goal, a plan, strategy, and tactics for reaching that goal, and then focus on success with just that first. Use us -- this community -- to help you set the goal, how to reach it, and as support in getting there.

Let us help you, then be accountable to us. We're family here. We want to help you. We'll have your back if you're struggling to stay on track with your plan. We can help you get back on the wagon.

However, do not try to tackle all these problems at once. You will almost certainly fail. You need successes to motivate and encourage you to tackle each problem.

Finally, patience patience patience! You have a lot of work to do. A spectrum of problems to tackle. Think in terms of months at a minimum to get control of some of this, maybe years in the most stubborn issues (like weight loss).

So, all that said, I'd start with the goal of getting your BG in line first, and postpone worrying about the rest of it until you have that under control.

swisschocolate - Thank-you for the kind words!

I hope that the tenor of my comments did not injure Giggs. I worry that his frail sense of self might be hurt. He has not engaged with his post since he wrote it. I hope he's OK.

Thank you all for your help and advice greatly appreciated! It has been tough for so long and the not knowing how it has all went wrong and how to fix it has been horrendous however I have decided to try Gluten Free for a month to see what if any difference could be made . Plus Terry I appreciate your words and although a bit delicate I don't think people on here could harm me. Thanks again

Thanks for posting your comment. This method of communicating leaves out a lot of information and one never knows the full story. I'd hate to write a badly received comment that only made things worse for someone writing about a "terrible struggle."

Glad to see that you're willing to test a gluten-free diet. Some people do react poorly to gluten and some can't tolerate it at all. I hope you learn something useful.

You came here… if I do not "understand" a particular issue, there are a hundred others who WILL, and do understand intimately what might be academic knowledge for me?

I apologize for my lack of understanding re: your weight in stone. I suspect that once ANY of the issues you mention, even a single one gets pinned down, I believe it certain-likely the others will be tangibly less. All you need is one single tool to give you hope, any tool, any arena will do.

Whatever issue is screaming the loudest compounds the other problems. Enough tiny ones combined, and they morph into something bigger when combined together.

Have you seen a doctor for a full work up recently? Regular weight loss, crushing your pain will take some time, and consistency. But other problems could well be the cause(s) and ZERO to do with your diabetes per se. Requires blood work, and an exam or two.

Confidence is a funny thing. What we do on a daily basis for decades would KILL most people outright. Betting with the right discussion(s) you will find something you didn't recognize. Confidence… hidden away.

Is this "control" something we must have IYV? I'm content if I can keep the dragon where she belongs, chained, lurking in the darkness in her cave. Control??? I respect the disease too much to believe I "always" steer this ship. Believe we "must" control, teaches many despair… IMHO.

It can be avoided, and still fight it zealously anyway.

Hi Giggs,

You've gotten great advice. I wanted to agree that I would first address whether there are other issues contributing to all of your symptoms by getting a physical and some testing.( I would see an orthopedic doctor specifically for your back/pain issues) I would reach out for help in the form of counseling and a support group. I would address the pain issues to see if that helps your depression, maybe with some pt at a clinic and or at home. Baby steps for getting back into exercising with maybe only walking a little bit each day and some muscle strengthening exercises to help your back pain. I think going gluten free is a good idea and I hope it helps you. I have eliminated bread and wheat for the most part and it seems to help my bg management a lot. For weight loss I recommend low carb diets- they seem to work very well for many people. Increasing raw vegetables as well as water intake.

I have had chronic pain/fybromyalagia for a long time from injuries- I have a tens unit, moist heating pads, ultrasound etc. at home so I treat myself at home a lot and it helps a great deal, so I recommend this. I think you need some one on one pt for a while to get your back issues addressed.

I think all of these including weight loss is going to help you to manage things better and to feel much better.

I have been gluten free for 5 weeks now however do not see any real difference and are totally disgusted at the size of my stomach I HATE IT !!!! However struggle as I want to eat all the time and struggle not nibbling. What can I do as I am desperate

What's a CGM?

Ok, was gluten the diagnosed issue, or a best guess by someone???

You are NO different than any other person you know, or any total stranger for that matter. There is food, some good, much bad to which you have access. The trick is eating the stuff that will HELP, or at least do no real harm...

You make choices, all day long. What is it that you are "nibbling" prey tell? Whatever the food(s) might be throw them in the trash. If you do not have EASY access to them, a hidden stash maybe, it is less likely that you will eat what you cannot easily get to. If you have to walk, get on a bus, hop in a car... very unlikely you will "nibble" easily.

It is going to take some time to get things reversed, GIVE yourself that time. If you want instant, you're going to have to get the plastic surgery instead my diabetic brother.

Lots of water will help give you the sensation of stomach fullness, and it does do that job well. It's an old weight loss trick.

I am unfamiliar with gluten issues per se. Is plain popcorn any possibility? How do you feel about cucumbers, pickles, radishes...? There is an endless list of vegetables, foods which in terms of quantity will fill you up, many of which can be delicious and very filling.

The disgust will pass as you make slow progress. Instant is not how any of this stuff works most of the time. For "instant" those are medical interventions, and few are pleasant most of the time.

What are you desperate about precisely Giggs?

Hey Stuart ,

I have felt for the last few years I am climbing the steepest mountain and are never able to get breath. The team " looking " after me are poor and not interested as they never help when I ask questions and continually say it is all down to diabetes and if m/mol is not controlled you will feel this way yet has been pretty good for a while . My mind is shot to pieces and simple tasks give me brain fog and I get frustrated it has been a rapid decline

CGM is a continuous glucose monitor - You insert it either once a week or every 3 days (depending on the brand) and it it gives you a constant reading of your bood sugar. It is almost painless to inswert so don't let the big device scare you. It has helped me tremendously after 25 years with diabetes and burnout like you have. Hang in there

Sir Giggs,

I sent you a friend request as I would like to send you a PM. I struggle with many of the problems you listed and am finding some solutions. Maybe we can help one another.

Hi Giggs,

I just wanted to say my heart goes out to you and I'm sending you (virtual) support from Canada. I've been really struggling too for the past year, and have been getting more in control for the past month, but each day is a challenge and it's been all I think about. This site has made me feel less alone with it, and has helped to alleviate a bit of the stress.

As far as appetite, I started on Victoza a month ago and it has really helped to have more control with my appetite. Also, I find that I'm better able to resist nibbling when I increase my lean protein & good fats and decrease my carbs at meals & snacks. I track everything on myfitnesspal.com so that I know my balance of carbs, fats and proteins. Keeping it balanced helps me to have fewer carb cravings... and also the more carbs I eat the more carbs I crave so I've been keeping it minimal.

Most of all I just wanted to reach out and tell you you're not alone.

Just curious, what part of the UK are you from? Would you be able to find another team of doctors? My doctor is associated with a hospital which has a diabetes clinic (an endo, a nutritionist, etc). Maybe see if you could find something like that? Your doctors play such an important role... it's a shame they're letting you down like that.

Giggs, what does your BG situation look like, day to day? You've share your A1c, but that's really not enough information to judge if BG is a major cause of your other problems, or not.

7.2% corresponds to an average BG of 8.9 mmol/l (160 mg/dl). How your body realizes that average is very important, however.

First, 8.9(160) is, simply, too high. Period. You need to get this under 7.8(140). However, that 8.9(160) can be because you're hovering around 12.2(220) half the 24 hour day, and 5.6(100) the other half of the day. This would be quite bad, and rather damaging.

On the other hand, suppose you were down at 4.4(80) 2/3 of the day between meals, and up at 18(325) the other 1/3 of the time after eating. That would still average to 8.9(160), and give you the same 7.2 A1c. Still not good, but much less time spent over 140, so the impact on your body will likely be less severe. Chronic high BG is quite damaging; huge swings in BG can really affect your mood and overall "feeling" of health.

The point is, there are many profiles that will yeild 7.2 a1c, but some are more damaging that others. So, you've got to get more resolution on what's happening with your BG.

There are currently two ways to do that: A CGM, which will give you a continuous readout of your BG every 5 minutes, with the reading approximately 15 minutes delayed (i.e. the current displayed value is what your BG was about 15 minutes ago). The other is to test test test with your glucometer.

The latter approach should include, at a minimum, 8 tests/day. One when you wake up, 1 before bed, and 1 before and after each meal. If you're not already testing this much you should be anyway, and logging/recording the data.

Gather a week or so of this kind of information and then come back and share it with us. Also, give us details about your treatment regimen -- do use use long acting insulin (I'd be surprised if you're not!)? Short acting for boluses? Any oral meds?

With these two things -- BG profile data, and treatment regimen -- TuD can help tremendously in helping you figure out what to do, what to talk about with your doctor, and how to get there.

Hi Dee ,

Thank you for the lovely response it is greatly appreciated.
I am in Northern Ireland and feel I have no one to turn to on the health trust.

What kind of meals do you eat to reduce carbs and cravings?

My diet has always been poor and my taste buds pretty poor so new food is always a worry.

The doctor has stated l might be going on an appretite tablet in August however forgotten the name it does begin with C however completely blank.