On living with a chronic illness

a reply to: geezlouise

Haven't heard from you in a long time and have wondered where you were.
So sorry for what you are going through.

My daughter has type 1 diabetes. First 2 pregnancies it was called gestational and in 20 years she would develop diabetes.

A year later she showed symptoms but was not diagnosed till age 24.

She ignored the rules until 15 years ago when she was told she would be blind in 5 years. Her progression of retinopaty has stopped thanks to a good doctor and her finally understanding what she could look forward to if she didn't shape up

Even knowing what she goes through I can not relate to the to the constant regime and what will power it must take to follow and endure.

Be angry, but keep your determination Geez Louise. Glad to see you posting again and I and others are hoping the best for you.

Be a warrior.

a reply to: geezlouise

I'm sorry to hear you have been struggling so hard with this. I know the difference between type 1 and type two. My Husband is a type 2, but needs insulin shots. He is 61 and will be facing dialysis in the future as he is a number five out of 8. That means when it reaches eight , he will probably be on dialysis. He lost a leg years ago, but has a prosthetic leg and gets around just fine. He is 61 and has other health issues, but nothing keeps him down.

You have the strength and courage to hang in there and fight. Much love and light Louise! You can PM me any time if you need someone to talk to. K?

My son ( now 15 years) have had type 1 for 12 years now. He is using insulin pump with continious blood clugose monitoring, he had his first pump when he was 5 years old. I remember we were on a train and after eating we gave him bolus with his pump, middle aged man asked what device is that? We told it is insulin pump, the man asked if he has diabetes, we said yes. Then he was so sorry for our kid " So young and his diabetes has gone that BAD!"

When he was diagnosed, there were other kid in same room with him. This other kid´s mother asked what is wrong with our son from the nurse. Nurse said " death sentence, diabetes " . I was stunned she really said that !

I know your struggle, but keep your head up. Diabetes is not death sentence, i know 81 years old type 1 diabetic and she has no other health issues.

You should consider insulin pump with glucose monitoring, it stops giving insulin before you have lows and gives you heads up before it goes high. There are also insulin pumps which are like bionic pancreas.. which makes calculations for your behalf and advices.

I hope for cure and other people to understand Type 1 is not Type 2 and it is not something you have got by life style ( pointing fingers .. you know ) it is autoimmune disease..

just my 2 cents ...

Cheer up

a reply to: geezlouise

That sounds a lot like what my dad went through. It's got to suck. Take care of yourself.

a reply to: geezlouise

I don't understand people like this.

I have chronic stomach pains that can not be cured. I also have to very carefully watch my diet. I can not enjoy most foods at all. Sometimes it's so bad I can't eat for days. I have never once thought of blaming the world or people or anything. It doesn't make me sad.

My mom has dwarfism , osteoporosis, gastroparesis, anxiety, chronic hives and she also never blames anyone for her pain. And she definitely doesn't see her life as sad.

a reply to: scraedtosleep

Good for you!

I think the circumstances differ for each individual and that we are all, as cliche as it sounds, fighting unseen private battles that nobody else knows about. Also, I have been facing my shadow for many years now... I have a dark and angry and even sometimes jealous side which quite honestly makes me a terrible human being and as much as it hurts to know it, I carry this knowledge around with me every day like a thorn in my side.

But at least I have boobs!

a reply to: geezlouise

Lou,
I'd guess it's a lack of compassion that leads to not understanding others.
We all have that dark side, and are capable of finding resonance with all the negative emotions. Only some of us face that darkness and even less will openly admit to it. And as I see it, those brave enough to express themselves honestly do reach others (the ones who need it most).

I love you (and all that makes you Lou)!

a reply to: zosimov

I would agree with you.

I am not always super understanding myself, and I know part of it is just also not knowing/not being aware/not having the imagination to wonder what other pertinent details might be hidden from plain sight... and I also know that it hurts to have compassion. It is literally a painful experience to be able to understand and some people are lucky for that reason, to not understand. And maybe it’s the threat of pain sometimes that encourages us to detach and deny our own shadows and not even want to understand... and I understand all of that too.

I love you forever no matter what!

Its a pain in the ass, isnt it?

I dont have diabetes, for which I am grateful, but I do have other issues.

Its totally life-changing stuff, and there is no way to really understand it without living it. Which, I suppose is true for just about everyone.. but when its an extreme situation, it makes it exponentially more difficult to relate.

Personally, Im still content with life. This existence can be a horrific sh!tshow, and in the grand scheme.. Ive got it good. Now, thats easy to say when the going's good, but its profound when it isnt. I get to spend time with people I love, and can still do some things I enjoy.

a reply to: geezlouise

I'm a social worker that does in home assessments for elderly and children/adults with disabilities. I see people living in chronic pain and with chronic illnesses almost every day. Some of them live alone and have absolutely no friends or family near by. It is truly sad and breaks my heart, but they are some of the strongest people I know to literally fight every moment of every day.
Best of luck to you, and I hope you have a good support system in place around you.

I've got type 1 8 years now, my life has totally changed after diagnosed.. to better! After realised my time is limited I started to really do things and have overcome every possible obstacle since then, stopped all the bad habits too. It has been like having some kind of advantage my time is more important and Im using it wisely now. If your condition is new I understand but please don't feel miserable, you still have everything important left. Stay strong!

a reply to: AcerM

I am so female...glad you posted here that is what this thread is for.......don't know if this will help, or put things into perspective.......we had a roommate for a year and a half who moved out at the end of last year, not only is he a type 1 diabetic but he also has grand mal seizure disorder on top of that! sometimes his sugar would drop fast and we had to get it up fast.....he took insulin of course and medication for seizures but he would have a seizure day maybe once every 6 weeks and he would have 3 seizures in that day......sometimes we had to call 911 if we couldn't get his sugar up or the seizures knocked him out too much........not an easy combination....and rarely he would have a seizure day and his blook sugar would be low and he and us had to deal with both......it was not easy but you do what you gotta do......looks like some promising stuff coming down the pike on the diabetes front and I hope it is soon and it helps you to have a better life!

a reply to: geezlouise

*hugs*

a reply to: NightSkyeB4Dawn

I don't know if I have said it before but I truly appreciate your contributions on ATS and secretly soak up every word whenever I see your posts on threads... you've made an impact on my life, honestly and truly. So I'm glad to be giving something back to you, I love you forever no matter what.

a reply to: Nothin

LOL, I like the woman in the elevator joke. That's me already, I'm ever so gassy, maybe that's because I do love my broccoli!

a reply to: rickymouse

Sometimes I do feel lucky that I have the evil Type 1 instead of something worse.

Thanks for your kind words, your mother is an inspiration to me and I hope you take care of yourself too! Low blood sugar is far more dangerous than highs in the sense that you die faster. And seizing and low blood sugar spells can give you permanent brain damage... so take care!

originally posted by: AnonymousMoose
a reply to: geezlouise

I'm a social worker that does in home assessments for elderly and children/adults with disabilities. I see people living in chronic pain and with chronic illnesses almost every day. Some of them live alone and have absolutely no friends or family near by. It is truly sad and breaks my heart, but they are some of the strongest people I know to literally fight every moment of every day.
Best of luck to you, and I hope you have a good support system in place around you.

I have to imagine its relatively common for folks in situations like that.

I know I cant really go out and meet people. Most of the people I cared about are now dead, with the rest being busy taking care of their families. I think the latter part, at least, is pretty typical for everyone but its offset by simply meeting new people or starting a family of our own. Its just not an option for everyone though.

Technology changes things for a lot of folks, though I feel for those that are uncomfortable using it. If someone is really pining after some companionship beyond general message boards, it can be done so much more easily now. Something like dating is still very unlikely, but even though some are brought up thinking thats the only path to "meaning," life can still be fulfilling without it.

I think life is a fight for many, if not all.. We just dont particularly realize how easy we had it until something comes along and changes everything. Even then, it can still lead to some pretty profound lessons that may have never been learned otherwise.

a reply to: geezlouise

You are not alone. As far as I know I don't have diabetes, but the severe left brachial plexopathy I suffered in a work accident has become chronic and leaves me in constant pain. Sometimes it is better, a lot of the times it gets worse. I can feel changes in barometric pressure and most of the time when the pain gets worse it let's me know there is a storm coming. Because of the accident my left arm, shoulder and arm are nearly useless. After 8 years my left arm, shoulder and hand still swell up a lot if I leave it in one position for too long and the pain gets worse. Getting up is a constant battle since I can't do most of the stuff I used to do such as exercising, exploring/hiking, etc.

This injury also affects my skin in the arm, shoulder, and hand. Barely any hairs grow in my left arm and the extreme sensitivity also causes pain. Room temperature water in the summer feels like ice cold water, and warm water feels like scolding hot in my left side. I control my weight with what I eat because I can't exercise anymore. There are days I barely eat anything and stay in bed. If i try use my left arm/hand it gets weaker and weaker and comes to a point that it shakes by itself and the pain gets really bad. I have lost conciousness because of the pain, which makes me feel worthless at times, and being as hard headed as I have always been simply makes me continue to try to use my useless arm/shoulder/hand, which only makes it worse.

Doctors have prescribed heavy medication which takes off the pain completely but leaves me like a mumbling idiot which is why I have refused the heavy medication such as oxycontin, hydrocodone, etc. I still have to take gabapentin, celecoxib, cyclobenzaprine and lidocaine patches 5% which help but do not take off the pain completely. I also have a spinal stimulator which sends electric signals to my brain to try to mask the pain. At first it seemed like a miracle because it lowered the pain considerably, but after a year and a half of having the permanent spinal stimulator it doesn't relieve the pain as it did at first. The Nevro nurses keep trying to find a new frequency that could mask the pain more. Which is why I also get nerve blocks once in a while, but when I do the first few days it feels like a horse is trying to pull my shoulder/arm/hand from their sockets. Heck sneezzing does the same but to a lesser degree although when I sneeze it still feels like a horse, or a truck just hit me in that left side.

Anyway, just wanted you to know that you are not alone. Hang in there and have faith. If you don't believe in God have faith in your doctors. Some doctors are aholes but if you keep looking you will find that there are some, mostly specialists who know what you are going through and will try to help you. If you need anyone to talk to let me know. Be strong. God bless and I hope you get better.

a reply to: AcerM

I think when we have properly faced death... it does change us, often seemingly for the better in the sense that we realize how very stupid and very small our personal insecurities and fears are.

And we realize how truly stupid our lives are which can lead to a kind of ego death allowing us to reawaken to the things that give life more meaning.

And we realize how stupid all of the things we say are, and how stupid we ever thought we were so important that everybody should listen to us or celebrate our lives or our stupid illnesses.

I do understand that, just so you know. But I would never be thankful of my condition and I would never wish it on anybody else.

I've had this condition for many years now as well, just so you know.

I haven't faced any complications yet.

This did not make me a stronger better person.

On the contrary... it's made me a weak and tired person. It's something that has taken my strength time and time again- but luckily for all of you and specially for me, apparently I was born strong with a super strength resiliency and that means I can apparently take the hit and just keep on keeping on.

I also have chronic illnesses and I guess hope can be really important, it has been for me. Just trying to push on and get through. Trying every day to make progress. To those in this group don't give up, you aren't alone...and to the supporters, thank you.

a reply to: geezlouise

I once had a childhood friend with Type I. She had to test her blood almost hourly, it seemed, and this was when the tests were where she had to prick herself with a needle each time. Being phobic of needles back then I couldn't imagine anything more horrible. And she had to forego all the treats the rest of us enjoyed. She never acted like she felt left out but it must have been lonely. A terrible thing to have to live with. And yes, actually, I did feel lucky not to have diabetes or a body where I had to be constantly vigilant (like life-threatening allergies or asthma). Very lucky.

originally posted by: geezlouise
It's utterly broken... and I still sometimes want to blame the world and everything that happened to me for breaking my body.

Maybe blame your previous life where you persecuted an innocent victim that indeed suffered from diabetes. This idea may have applied to my previous life as well.

Or blame the chemicals that the globalists force down our mothers and fathers throats before we are born.

Death would come swiftly and almost soundlessly, and sadly it does happen.

Lol. i agree. Epileptic seizure (Chronic illness) whilst cycling to work next to an overtaking 18 wheeler - hmmmmm. Well at least there will be no memory, hence no pain of the event for an epileptic whilst going under the wheels of the LGV.

helplessness of the situation, because it's too hard for you to accept that any body could be so helpless

It is not helplessness. Let the chronic illness make you stronger as you can survive and exist in this harsh world with your disability.

Harsh. Maybe. i have managed to survive and carry on as close to normal as possible since only 17 months old when the first seizure occurred. So i am sure others who are born with a Chronic illness can do so as well.

So in the spiritual world, your chronic illness will not exist.

Look at it as a gift. Ones spirit is immune from these chronic illnesses and physical defects.
And i am sure that epileptics out there, who suffer a blackout now and again, often see and argue with a negative Rephaim entity whilst speaking Latin. A language that they have never spoken in their entire lives.