[Sam2]

Today I went to the barn to visit and ride my pony. I haven't been there for a while, because one visit usually knocks me out for days. I've been trying to improve my strength by lifting barbells. I thought things would be better. When I got out there, I climbed on the mounting steps and couldn't bend my leg enough to get it into the stirrup, nor could I hop high enough to get my body up onto the saddle. If the barn owner had not been there, I could not have gotten on at all.

It seems that every day I lose more and more regardless of exercises and stretching. Each day is a new adventure in pain in my head, back and legs. My meds aren't working anymore and things are only going to get worse. The only time I'm not in pain is when I'm asleep. That isn't much. Usually I sleep in half hour increments at night seperated by a couple hours of consciousness. I don't see my pain doc for another month. We have tried everything, both conventional and non conventional. I've told myself I wouldn't take my own life, but I have to admit that if something happened, I doubt I'd be afraid to die. I've already decided if I wind up in the hospital, I want a DNR on my chart.

Sam2

[Travelinglady]

I'm so sorry, Sam2. I hope you don't mind my asking, but do you have diagnoses to explain your pain and muscle weakness? (I haven't read any other posts about you that I recall.)

[Quebec01]

Dear Sam,
I am sending you all my compassion. I know how that feels. A few years ago, I was diagnosed with fibromyalgia. It is often associated with chronic fatigue syndrome. I am constantly in pain, and it flares up to being unbearable. I know exactly what you are going through. When I read your post, I was moved.
Stay strong! Maybe they will find a cure.

[Sam2]

PAYNE1,

Boy, have I had tests. Rads, MRIs, CTscans, bloodwork, psych evals etc. Some of them multiple times. My Dr. has even refered me to another neurologist, who unfortunately thought he was God.

There is no diagnosis, but there are so many triggers that I question quality of life. Among those are foods, light, sound, smells, too little sleep, long car rides, airplane rides, lying down, heat, I could go on, but I think you get the picture.
My Dr. once told me that if I were a terminal cancer patient, he would keep raising the doses on my meds without concern of overdosing, but at my age, he can't. He is thinking of retirement, and that scares the hell out of me. He is the only one who has even come close to making me functional.

Quebec01, I take it you are a horse person. The lady who owns the barn I board my pony at has rheumatoid arthritis. Mainly in her hands. Some days she can't get out of bed. She is married and has a close friend who fill in for her when she is having a bad day. The picture of the horse and your pain reminded me of her even though the disease is different.

Do either one of you have DNR orders that you carry with you? I was just wondering. I'm not planning on doing anything, but if something should happen, like a car wreck, sometimes I think it would be better just to let go. At present, I'm a fifty year old man in a 90year old body. Its doubly frustratin because both of my parents are 80 years old and still camp and hike in the Colorado mountains. I spent eight years in school to acheive a life long dream only to have it yanked out from under me after three years.

Thanks,
Sam2

[Quebec01]

Dear Sam2,
I raised him from a 2 year old until he was almost 18. He was the love of my life. I had to let go of him because of my health but mostly for financial reasons. It is difficult to have a car and horse while on disability. I'm still heartbroken about this separation (Last year). Since giving up my horse, I've tried to find something uplifting, but nothing ever seems to cheer me up.

About the DNR, I looked up the site of the Bureau des Techniciens Ambulanciers du Québec for information. I was wishing for the possibility to register this DNR in their data file, but it does not work that way. The scary part is needing to advise my doctor (my psychiatrist...) and family members about the existence of this paper. They will all be on the alert, and think that I'm suicidal. My family denies my sickness and pains...
I was wondering, did you ever come across some medication that gave you some sort of relief? So far I've tried Lyrica and Cymbalta and it wasn't too helpful.
Take care
Quebec01

[(JD)]

Are you in therapy for your chronic pain? Chronic pain causes many mental health issues for us...and having someone to help you sort through things, and yes, reduce your pain in alternative ways, is a must have imo!

SOMETHING is causing all this, and it might not be just one thing.

Have you seen an allergist by any chance? Having allergies or even one allergy to something can make you feel crazy, not only give medical illness. I will share that I was so brittle with allergies that the doctor saw no one else the day I went in... he also had a lady whose allergic reactions all ended up as a heart attack! Two girls were deaf from allergies and once he got them squared away, they are hearing and normal. If you can't see an allergist, then try keeping track for 2 weeks everything you eat and come into contact with (oh I know this is hard work, I've done it many times)... and what you felt when too... you may find that your joint paint (for instance, example only) comes on at night after you eat white foods (potato, bread etc)... or your muscle spasms are worse if you don't have enough water...

the body is very complex and most doctors don't have the time to help us sort things through... but to have a therapist help you know you aren't crazy and who can help you find some ways to reduce your realization of pain, well that's a good doctor!

[googoo]

In response 2 Sam2:The DNR I'm sorry but it sounds like such a bleak outlook unless it would mean TOTAL debilitation u should rethink that thought.I also wud not want 2 b totally dependant on anyone 4 everything.Instead maybe think of all the good things u still have 2 experience & are able 2 do.I also in the last year have gotten unable 2 do most everything I used 2 enjoy & 2 b able 2 accomplish & its soooo frustrating & depressing.I'm in pain 24/7,I suffer with degenerative disc disease with bilateral sciatica,osteoarthritis in the top of my spine,diabetes,which I suffer from poor circulation in my legs causing legs,ankles & feet 2 swell pretty severly making them ache soooo badly somedays I wish I could cut them off!!!I also have diabetic neuropathy in my right arm which causes weakness ,numbness & yup PAIN!!My right shoulder is full of arthritis as well(what a whiner eh??)I find it hard 2 even get down in my tub,climb up on my kitchen stool 2 get in my top cupboard,can't kneel 2 do the gardening I used 2 love sooo much,yr getting the idea eh??If I sit around 4 2 long I get stiff & sore,if I try 2 do anything I get stiff & sore....I think tho I've found the solution...I do tiny little bits of whatever I have 2 accomplish & spread it out over the course of the day or 2 days if I have 2.I then don't ache half as bad so maybe u could give this a try,just take yr time,who cares how long it takes,but it makes u feel good knowing that u r still quite capable.

[Grey Matter]

I have a DNR, and I think, in my case, it was a logical decision. I had it before I became chronically ill, and I have kept it since then. I think a DNR is a personal choice, and if you feel it is right for you, then more likely than not, it is. I know many disagree with such a statement. But we do have autonomy when it comes to our bodies. As someone once said to me, life support isn't for the patient, it's for the living.

It is so incredibly frustrating to not be able to do what you used to love. For the past year I have had every test, endless amounts of blood taken, hospital stays, you name it. I was diagnosed with Adult Onset Still's Disease, and of course, for me, it's chronic. It is sad and heart breaking when things you love is no longer an option. I have figured out though, that I just need to find new things to love. Your body and mind come first. If it hurts, you must listen to your body and respect that it needs rest.

It's not as simple as accepting that you need help now or you can't do things you used to, it doesn't happen with a snap of a finger. You're allowed to be angry and frustrated. I hate when people sugar coat disabilities as a way to minimize our suffering and struggles to make it easier on themselves. We go through hell everyday. And sometimes getting out of bed is good enough and should make you proud.

Take care.