I'd like to talk about chronic illness

[hyphenate]

And while I might say some alarming things, I don't want anyone fretting about what I'm saying. Please--it's hard enough to even talk about this without everyone shrieking in terror or in fear that I'm going to do something I'll regret later down the line.

I've posted in other forums in the past about how suicide is not an option for me right now. But I have the utmost understanding of why some people do it. This understanding comes right now at personal expense--dealing with the effects of diabetic neuropathy, fibro, depression and several other things, I can definitely see how someone would try what they could to end all that pain and frustration. Dealing with chronic illness with high levels of fatigue, pain and other sorts of misery makes life not so much fun. It's been only 10 months since the neuropathy began, though I've had the other stuff for years. I used to hike, walk a wide variety of places, and while I used to bitch about it sometimes, at the very least I could still walk.

Then I started falling, walking like a zombie, and lost all the muscle in my legs. Spending a few hours out meant a whole day to recover at home the next day. It meant I started to have no life, because I had to decide what was more important: going out for a few hours or feeling okay. Nowadays, I have to carefully plan those days that I do go out, and have cancelled appointments and activities on the same day because I can't even drag myself around the house.

I can't even spend more than a couple of hours at the computer--I'm in agony if I try. I have to physically lie down every few hours in order to "rest" and to ease the pain in my legs.

But even so, sometimes I think about something I called "long-term suicide." It's where sometimes I don't really give a fuck, and thus take some things less seriously than I probably should. Like diet, for instance. I love chocolate, and I really don't want to follow any kind of diet that forbids me from enjoying my ice cream or other favorites. Sometimes, I don't even want to eat anything at all, and the doctors get mad at that, too. Exercise is near impossible for me, and there are other things, like taking insulin, that I often neglect.

Like I said, I'm not "suicidal" on some respects, but sometimes I feel that if I had to give up everything worth living for, then I might as well chuck it all now. Other times, I think that "long-term suicide" is a way to cover all the bases--nothing that would instantly alarm anyone, but certainly taking some things in stride and allowing other things to slide.

The only thing that worries me is who would take care of the cats should something happen to me. And I haven't got an answer for that. And that's the one main reason I'm here right now is as a caretaker.

And yesterday I admitted something else to myself: I can't commit suicide because I'm as curious as all hell as to who will be our next president. That might sound rather nebulous to an outsider, but admitting it here is easy. And unless there is a natural death lurking somewhere out there that I have no control over, it does stop me from the one I have some control over.

I know I have no real control over much else in my life, but I do have this part of me that gets more tired every day and which tries to find ways around the pain I feel every day. Right now, the psychological part of me is eagerly awaiting the future when we can all live a "normal" life with a president who isn't anxious to start WWIII, even if the physical part of me protests all the time. I just hope that the psychological me manages to survive to see that day come.

[murielm99]

1. If you are interested in seeing

'what happens next,' you are more okay than you think.

I remember resisting a doctor's attempts to help me develop what he called "good sleep hygiene" during one of my many bouts of insomnia. I told him that I had learned to live with insomnia. There were times that I was simply afraid that I was going to miss something. I don't want to miss anything!

I don't want to make any trite comments about your situation. But I do hope you survive to see that day, too.

[sandnsea]

2. I completely understand this

I have been sick for many years, I don't really know how many. I thought it was just going into menopause. Long story short, I discovered I'm hypothyroid a year ago. It has been a roller coaster since then, trying to get the medication right, along with a practitioner who hasn't been the most helpful. In addition, I'm also diabetic, my cholesterol is a little high, and now my blood pressure is high too. My memory and brain functioning is just weird, and I have a strange tension in my head. I also have acid reflux, and too much fiber can cause such horrific pain that I can't function for hours. Makes it harder to manage a diabetic diet. Then, when the thyroid medication isn't right, I tire out in less than 5 minutes, so I can't exercise either. Throw menopause on top of that, plus some anxiety and depression. It is very hard to stay motivated every day, and I'm not even a quarter as sick as you are. I'm desperate to get this under control because I don't want to live like this for the next 20-30 years. Some days the only thing that keeps me going is my grandson. That doesn't even begin to get into the economics of it all.

I feel for you. But I do take my medicine every day because like I say, I'm trying to avoid getting worse. When I want chocolate, I get the little sugar free Hersheys and have one or two at the end of the day. My husband eats the sugar free popcicles. I don't know your situation, but maybe frozen yogurt or the double churned ice cream would work? I put fresh peaches in mine, or berries and granola, to help slow the blood sugar spike. I think there has to be some way to satisfy your cravings because otherwise you just break down in the worst way possible, I know I do.

Anyway, I'm feeling pretty good today because I got a new doctor on Monday who is actually listening to me. Who knows how I'll feel a month from now, I'm just glad to feel good today! Hang in there. :hug:

[fed-up]

4. I just read in one of my books that cholesterol can go up during menopause-mine is slightly nt

[blondie58]

3. how about marijuana for the pain

I've been told that it really works- and after awhile, you don't even get high from it. I'm sorry that you're having such a tough time. I often joke that I should have taken out the extended warranty on this body.

[Lurking Dem]

5. Let me share.

I was diagnosed with diabetic neuropathy 17 years ago.

The "front" end of this disease process is a nightmare. I totally understand how you feel. I was also dealing with undiagnosed systemic lupus at the time.

I was an ex ballerina, hiker, camper, indoor soccer player - very, very active. All of a sudden I could barely walk, needed a cane, couldn't wear shoes (or socks or have a sheet touching my feet) and loss muscle mass in my legs.

I was virtually bed ridden for 2 or 3 months.

Very little was known about neuropathy at the time. Various drugs were tried without success. Neuros refused to treat with pain meds for fear you would get addicted - even if you were waking up screaming for someone to cut off your legs. They kept saying it would "resolve" in a few months. Then a year.

My point? IT DOES GET BETTER. As those individual nerves die off the pain/heat misfires to your brain stop.

But there are things you need to be proactive about to help yourself.

#1 is good glucose control with A1c's under 7%. The higher your sugar, the worse the myelin sheath suffers.

Avoid alcohol. No one ever bothered to mention this to me and I was using it to self medicate. But alcoholics also get neuropathies beause it causes glyosolation of the myelin sheath surrounding your nerves. You may notice after a night imbibing that your pain is worse.

Exercise. This is a tough one. But it does 3 things. It increases blood flow, protecting nerves that are as yet unaffected, helps maintain muscle mass which affects everything from strength to metabolism, and it releases neurochemicals in the brain that relieve pain and depression.

Find something, anything, physical you can do. Gentle stretching, heated pool exercises, anything. The motions don't have to be big and you don't have to last. Start small and you will see yourself getting stronger.

You will have good days and bad days. Keep in mind that the bad days are not permanent! Think of it like riding waves. You may be in the trough but you will get back on top again and again and again. You will learn various coping skills from distract and redirect to schedule adjustments to what pharmaceuticals work that will allow you to manage this.

Various things I have found that help with the pain:

#1 is acupuncture. I know this isn't available to everyone and may be cost prohibitive but I have been able to go off of almost all pain meds because I get acupuncture twice a week. I have even had some nerve regrowth and have feeling in places that had gone numb.

#2 opiates. For some reason, low doses of morphine sulfate work better than higher doses of other types of pain relief. None of these totally get rid of the pain but they can make it more tolerable. Do not take it all the time and take the least amount you can to cope.

#3 Capsaicin cream. I think the over the counter stuff is .025% but you can get a .075% compounded or by prescription. This is made from hot peppers so DO NOT touch this stuff with your bare hands and then touch anything or anyone else. I found I also couldn't wear anything that covered my legs and feet when I used it because it made the heat so intense.

If you use it religiously - say 3 times a day - in a couple of months you won't need to use it much at all.

#4 Some people have found drugs like Lyrica or seratonin re-uptake inhibitors to be very beneficial. I did neurontin once and hated it so avoid the Lyrica and I got seratonin poisoning from Effexor so those are out. Tricyclic antidepressants also relieve neuropathy pain (as well as your attendant depression).



Yes, you are going to have some permanent damage and yes, you are going to have to learn to deal. But you don't have to do it alone. There are support groups, supportive friends, things in the world to delight and engage, and laughter. You need all of these in your life. It all helps.

I have had type 1 diabetes for 31 years. I have systemic lupus and Sjogren's syndrome. I suffer from peripheral neuropathy, autonomic neuropathy, and gastroparesis. I had seven pregnancies and only one live birth. I have weeks where I can barely get out of bed because of the lupus. I go for months at a time living on baby food and pureed vegetable soups because of the gastroparesis. The Sjogren's had me out last week because my mouth was so dry I couldn't talk or swallow anything. My tongue blistered and peeled and I got an ulcer where it had swelled and rubbed against my teeth. I get no respite because when something remits another thing takes over. I have to avoid all UV light and can never feel the sun on my face.

Do I get depressed? Oh, hell yeah. And I do understand people who want to, or do, off themselves because of their medical situation.

That said, I am still kicking and still learning and still adapting. Every day is my "new normal" as we joke. But we DO joke.

You are in the worst of it right now. Please know that. And {{{{{{{{{{HUGS}}}}}}}}}}

[Warpy]

6. You could have been describing me, minus the diabetes

but I still have a certain amount of neuropathy from the lupus. The nerves do eventually burn out and I no longer have that splinter under the toenail feeling, just the pin jabs elsewhere less sensitive.

I will take what I can get.

I've been lucky in that Ultram is controlling the pain quite well. SSRIs put me into severe hypertension, so they're out. Ultram, itself, does have a mild SSRI effect, but I'm tolerating it OK.

You are right about the slow stretches. Even on those days when I can barely crawl from bed to bathroom to maybe computer, maybe not, I can do some slow stretching. It helps tremendously with the fibro.

The other thing I do is make apple cider and soy protein smoothies on the days that swallowing is a problem.

[Lurking Dem]

7. I like the smoothie idea.

I don't know about doing cider because of the carbs, but when I'm averaging 500 calories a day it may not be a bad idea.

What kind of soy protein do you use? I know some of them taste like ass. ;)

If my blood sugars are controllable, my favorite shake is pineapple juice, a thing of Egg Beaters, and a tablespoon of honey whipped up in the blender. (oh look! My mouth CAN water! ;) )

I've never taken Ultram. My doc may have been worried about the seratonin thing or may have decided what I was using worked well enough and my reactions to meds are so bizarre why risk it?

Front line defense for lupus is, of course, steroids. Which I can't take because of the diabetes. And NSAIDs which I am highly allergic to.

I can't sleep at all on opiates (how weird is that?) so I only take them during the day and only if I feel like I'm dying. I sometimes take Zanaflex at night so the muscles don't cramp up.

[Warpy]

8. The Wild Oats store brand, vanilla flavor, isn't bad

There was a brand called Protesoy that was wonderful, but I haven't seen it for years and I don't think it's made any more.

I haven't experimented with any of the body builder protein drinks, but some of them might be quite good. Just stick to vanilla if you want to mix it with a fruit exchange or two.

I use cider because it's still got enough pulp in it to keep it cloudy, and I can use all the fibre I can get, especially when I can't eat it easily.

[Lurking Dem]

9. Thanks for the info!

I have to watch the fiber when my stomach is bad but when I'm working my way back up to real food (SALAD!) that might be a good place to start!

[Mojorabbit]

14. These are some great tips

I have neuropathy from MS. It is the one thing I can't handle. My latest MRI showed significant atrophy of the brain and I think that scares me more than anything.

[Lurking Dem]

15. {{{{hugs}}}}

I can only imagine.

We need stem cell research in such a bad way. I think the US is experiencing some bright sizing of its research scientists as they go to nations that will allow the research so our hopes may hinge on Israel, Brazil, or Great Britain.

[hedgehog]

10. Don't be afraid to get help for your depression.

Healthy people don't realize how much chronic pain day after day wears you down. I've seen members of my family become depressed and apathetic from pain. It's a vicious cycle. Pain leads to depression leads to more pain. It sounds as if you can't do much for the pain, but maybe you can do something for the depression.

[mopinko]

11. you sound more just self destructive than

suicidal. not sure that that is a significant difference, but i think it is like being a smoker. just don't give a shit, or just can't see that far into the future, or just need to spit in the eye of life.
i do understand what you mean. pain, day in and day out, it just wears you down. right now my fibro is flaring, after finally feeling like i was getting a grip on it. no control. that is just it. no control. i have a bunch of things going in the right direction, then, boom. going on 3 weeks of pain running my life again. i often do think that i wouldn't do anything to end my life, but i would be happy to see it end. just so much bullshit, and right now, at 53, feeling like this is not the life i thought i would have. at all. it seems like it would be good to just float away.
if i figure out how to get through this shit, i will let you know.

[ThomCat]

12. fatigue sets in after a while

and we all get a bit fatalistic. I've discussed suicide often with people I know who also have chronic pain and health issues. We all think about it and reject it at least for now, but keep it in the back of our minds.

My cats definitely keep me going too, because I don't have anyone to take them who I trust to really care for them.

I hope you can get as much activity and joy as possible out of your life. :hug:

[BlackVelvet04]

13. I'm really sorry to hear you are going through all of this.....

chronic illness and pain suck! I've been in pain of one kind or another since I was 13 years old. I have two metal rods and six screws in my back and a couple of other chronic problems I won't even go into, but it's painful.

I encourage everyone with chronic problems to investigate all the natural therapies you can find on the internet and decide on a proactive course for you. I've done that and there are herbs, vitamins and minerals that are gradually improving my conditions and pain. Some of the improvements have been quite dramatic and unexpected and others have been slow and not as encouraging as I had hoped for.