I am just getting to know my DS friends so I don't want to scare them off with some of my radical and weird thoughts about life with M.E./CFS . Because I've been sick for over 25 yrs I have spent alot on naturopaths, homeopathy, etc.. Also had lots of time to try diets, etc... The only thing that affects my body is caffeine and alcohol. When I have bouts of gastritis my stomach basically shuts down so all food is prblematic, but mostly acidic stuff.
For the last 15 years I have felt that NOTHING will ever improve my symptoms, no med, no diet, no vitamin, etc... In a way it has been freeing. I eat sugar when I want whereas for 4 years I thought it was making the burning mouth syndrome worse, and realize now MAKES NO DIFFERENCE. But lately, in a long relapse with lots of time to think, I feel very despondent and told a few people I'm at the end of the line. This is it for me.
Does,it make one feel more free? Like it doesn't matter what I do, this is my body for the rest of my life?
Im not afraid of dying and although other medical conditions that require visits to the hospital, treatment .etc.. Would be very stressful ,as long as they know what it is and are caring people, I dont really mind. Why? Because the experience of this illness is probably the worst experience ever.
Sometimes I feel that as soon as I have abit of energy I could (would like to) engage in some risky behavior, for the purposes of excitement and having fun. Risky behavior means different things to us all.
For me, risky is meeting people, talking ,maybe driving to new places (within Toronto), maybe dancing, etcc (I already tried some weed cookies I bought from a folk muscian at Open Mic. I just felt dizzy and sick.RATS!) and about dancing. I feel really weak and last about 2 minutes.
With this M.E. illness ,risky is also a shopping trip or just running errands, having to cope with people, stand up, think, talk, etc,..I realize now that even those short trips are high stress adrenaline adventures for me. Sometimes it feels (a little bit) like a nice adventure but it always ends in extreme fatigue,heart palpitations, sometimes nausea. So not really a good time. Because I wait so long sometimes to feel like I can do something, I have a natural desire to do something very fun and pleasurable. Alot of the old folks who live in my luxury condo complex are used to seeing me outside in our spacious tree lined backyard property, on a cold winter day, holding a steaming travel cup of tea and eating a cheese sandwich.
If I have 45 minutes of energy I want to eat lunch in the open air with a view of the green valley (golf course), rolling hills and trees and meet the many dog walkers and dogs (they allow dogs here so,there are alot) No one really realizes that this is my 45 minutes of freedom from my illness and I almost have tears in my eyes.
Anyway, thought I would share this and please give me any feedback would love it.
For the last 15 years I have felt that NOTHING will ever improve my symptoms, no med, no diet, no vitamin, etc... In a way it has been freeing. I eat sugar when I want whereas for 4 years I thought it was making the burning mouth syndrome worse, and realize now MAKES NO DIFFERENCE. But lately, in a long relapse with lots of time to think, I feel very despondent and told a few people I'm at the end of the line. This is it for me.
Does,it make one feel more free? Like it doesn't matter what I do, this is my body for the rest of my life?
Im not afraid of dying and although other medical conditions that require visits to the hospital, treatment .etc.. Would be very stressful ,as long as they know what it is and are caring people, I dont really mind. Why? Because the experience of this illness is probably the worst experience ever.
Sometimes I feel that as soon as I have abit of energy I could (would like to) engage in some risky behavior, for the purposes of excitement and having fun. Risky behavior means different things to us all.
For me, risky is meeting people, talking ,maybe driving to new places (within Toronto), maybe dancing, etcc (I already tried some weed cookies I bought from a folk muscian at Open Mic. I just felt dizzy and sick.RATS!) and about dancing. I feel really weak and last about 2 minutes.
With this M.E. illness ,risky is also a shopping trip or just running errands, having to cope with people, stand up, think, talk, etc,..I realize now that even those short trips are high stress adrenaline adventures for me. Sometimes it feels (a little bit) like a nice adventure but it always ends in extreme fatigue,heart palpitations, sometimes nausea. So not really a good time. Because I wait so long sometimes to feel like I can do something, I have a natural desire to do something very fun and pleasurable. Alot of the old folks who live in my luxury condo complex are used to seeing me outside in our spacious tree lined backyard property, on a cold winter day, holding a steaming travel cup of tea and eating a cheese sandwich.
If I have 45 minutes of energy I want to eat lunch in the open air with a view of the green valley (golf course), rolling hills and trees and meet the many dog walkers and dogs (they allow dogs here so,there are alot) No one really realizes that this is my 45 minutes of freedom from my illness and I almost have tears in my eyes.
Anyway, thought I would share this and please give me any feedback would love it.
Replies
OHMYGOSH! I\'m sobbing here. I know that no one realizes this about me, because I am basically very much like you.....I\'m friendly and upbeat and caring. I can tell that,you are the same way. HOWEVER, I am suffering SO MUCH as of late that today, I was laying, outside of my bedroom, on the rug, with my beautiful hand held cross (thank you Jesus for being alive and not on that cross)....and I just took deep breaths and asked Him if He was ready to take me. I told Him I wasn\'t afraid. I just laid there. About an hour later, I had a mild reprieve, emotionally and went back into my room and called my husband in. I just finished talking with him an hour ago. I told him I never wanted to let this disease win. I would fight it to the end. Well, I\'m 64 years old. I didn\'t get CFS/ME till I was 57.....so I have other \"old age\" things sneaking in on me too. I have to admit
*SORRYT ME OFF\"....that I am in good health (LOL..you know what I mean)! No cholesterol problems, no high blood pressure, no nothing, My blood work is perfectly normal. My doctor says I should be out skiing. However, I can lift my arms to drink my tea.
Well, this evening, I\'m reading your journal, and realizing how many more years you have lived with this ridiculous illness than I have. Yet, here you are. Still here. Still fighting. THIS JOURNAL was an inspiration to me. Someone with my illness, who is still fighting. You are a winner! YES YOU ARE!
Man, I hate this illness. There are no words to describe feeling close to death, until you actually do. And today I did. I really needed someone to come and kiss me goodbye. I though about calling my daughter! Goodness. I\'ve had these thoughts before after long crashes and I realize that I want to live. I want to live and do risky things like you! Like walk to the mailbox by myself. Or go visit a friend for lunch. Drive my car!! WOOHOO! That\'s a rare treat, but it happens.
Just know, my friend, that you are SO not alone. I\'ve been reading so many journals lately from people with CFS/ME and we\'re all just about to jump off a building. Is it something in the air? 2014 ain\'t startin out so great, eh????
Hey Pouty. Your\'e ok. Do something risky. Just one thing. Show yourself who\'s boss. Just have a friend and wheelchair/cane/walker/jet for backup....and slap this disgusting disease in the face. I\'m going out to my mailbox now!
Pouty, first of all...WOW..I\'ve been thinking along those lines of doing something completely out of character. For me it would be trying to go to a social event and trying to mingle, and actually meet someone. I hate the limitations of having to say, well I can\'t take your number because I get sick a lot and don\'t know when I could go out or how much time I could spend with you. I\'ve been divorced so long and alone so long, sometimes I wonder what a hug from the opposite sex would feel like. That was even hard to write.
I want to dance, also. I dream of going on a nighttime dinner cruise with someone interested in me, and just enjoying dinner and all the sights and sounds. Being at home most of the time is causing sensory deprivation. The bright lights of a grocery store even make me feel better. Is that weird?
Wouldn\'t it be great to go somewhere for a week and be pampered? Just forget about everything and be fed well, rest when you feel like it, talk to people who truly understand you and know what to say and how to encourage you?
Believe me, I can relate. Tired of being \"careful.\" Need to dress up and go out - for me there\'s a concert coming up in my city in February that I wouldn\'t normally attend due to the back issues. It would be fun to just throw caution to the wind and buy a ticket right now.
I definitely get it. Plus the weather outside has been \"frightful,\" Below zero temps today.