Frustrated at Not Being Able to Volunteer or Do Anything

[Carrigon]

I went to this hotdog party they had here yesterday. I was so incredibly sick the night before and right up until the last minute, I didn't even think I'd be able to make it there. But somehow, I did it. And the most frustrating thing was that I couldn't volunteer to help setup the table or help layout the food. I was raised to always ask to help. It's just a natural thing with me. And I was sitting there watching them, and I couldn't volunteer. I was afraid of triggering a bad attack of POTS if I did alot of standing and bending. Or using up too much energy and not being able to make it back to my apartment. So I just sat there, and the main woman who was doing alot of it looked at me a few times, and I felt like she was wondering why I didn't help. It was so frustrating.

That's been one of the worst things for me. I want to do so much, but I can't. There are a million things I'd be doing if I were well. And this disease will not allow me to do anything. I get maybe one to four days in a year that I feel like I could do something, the rest of the year, I'm ninety eight percent housebound. I make it to do my grocery shopping or go to the doctor. That's about it. There is no life. Once in awhile my friend takes me out to eat, but I'm usually flared up wherever we go and it's very hard on me to be around alot of people in a restaurant. And then I pay in spades for whatever we did for days and days.

I'm paying for going yesterday. And I paid all night for it. I just wish there was an end to this. I want my life back.

I had to resort to taking codeine last night for the pain, and it didn't do anything for it. I might as well have taken water. I don't understand why there aren't more effective and safe pain relievers out there. They pump out crappy drugs all the time, but we never hear of new, safer pain killers. The biologics are not safe. I've seen first hand what those do. I've tried most narcs, they do nothing for this. And the NSAIDS just ruin my stomach and give me heart problems. We need more effective, safe things we can take for pain and flare ups.

 

[peggy-sue]

I've found ways of coping with doing something good and life-affirming.

I rest up for weeks beforehand - not doing as much as usual - which isn't much anyway
- I juggle between making something to eat (lots of leftovers are useful)
and being relatively clean (I shower only every 5-7 days, and I have "methods" for reducing how much effort it is).

So I get dirtier and a bit tired of leftovers beforehand, but it's worth it.

I make absolutely sure I don't forget any of my supplements, I shower the evening before I'm having my "day of doing something".

I take a large dose of carnitine supplements in the morning and try to remember to keep my fluid levels up during the day,

I take the carnitine complex supplement again before bed, and do my best to calm down as soon as I can afterwards.

(I do have trouble with adrenalin surges if I'm doing something nice - or nasty or stressful)

I stick with intensive rest and carnitine for a couple of weeks, and mostly, I don't get too much payback.

It really is a matter of plotting and planning and finding a way to cope. I do sympatise - I love being in the thick of helping out at "dos".
(You'll always find me in the kitchen at parties....)

I'm full of plans to do stuff when I'm able..... they're all heaped up in corners, gathering dust.
I don't do dusting.

 

[hurtingallthetimet]

it is very hard when you want to do things so badly...i miss work terribly...hate that i had to quit..and hate that if i do anything i am wiped out...these illness are cruel its not like i can even voluenteer to do something over computer...i never know when and if i can do something..my typing and spelling are so bad..its like the world has no use for me...

 

[SickOfSickness]

I agree with all of your posts

 

[*GG*]

I know you have been sick for a while, seems that you have not let go of your past life still? yeah, it sucks you cannot help like you did in the past, but I don't think there's much you can do about that, right? Also, perhaps this is to far out there, but perhaps you could wear a sign people could read to explain some of your issues/health etc... Not sure I would want to wear something like that, but if it saved you the energy, of having to explain it to dozens of people or whatnot.

Perhaps I am just losing my mind also, so you can just disregard what i wrote. Wish I had a better answer for you, but I don't socialize like I used to, just not usually worth the effort. I am ok spending a lot of time to myself and not interacting with anyone.

GG

 

[November Girl]

Maybe you could carry a little card that says something like "I wish I could get up and join you, but I have very diseased mitochondria that keep me exhausted, and I cannot move very much"

You could play with the wording of course, but if you felt someone looking at you strangely, or pestering you to do more, it would communicate for you. Since most people will have no clue what "diseased mitochondria" mean, they also might be less free with the useless advice than if you tell them you have CFS.

It took me years to accept the limitations imposed on me by this disease. As long as I felt guilty for not doing things, people seemed to pick up on the guilt. Now I'm a lot more open about the disease itself and my limitations, and I find people more accepting.

I don't think I have to get dressed and sit up in the living room to enjoy a visit with a friend or neighbor. There is a comfy chair in my bedroom for them, and I can stay in bed and enjoy some conversation. Fortunately, there are days that I can greet them dressed, and sit up to visit. I still ask guests if they would like a drink or snack. Then I'm likely to simply tell them where to find the items. If it were someone I didn't know well, I would explain a bit first. So far, anyone who has been in my home knows me well enough that this isn't a problem.

Learning to fully accept our limitations is tremendously difficult and painful. I don't mean to minimize your angst, or imply it's a simple thing to deal with.

What finally helped me to accept myself as I am (as opposed to the healthy me) was to see clearly all my motivations - why I want to do things in general, do the normal participatory things in an event, help out where needed, etc. Some of these motives were good and reasonable. I enjoy doing things! I also like to be a part of what's going on. I hate to ask for help, or to "be a burden", or "not do my share" With my current state of health, "my share" is considerably less than it used to be. Changing my mindset on these issues was difficult.

But it took a lot of soul-searching to realize what was at the root of my always pushing myself to do more than I could. My self-worth was entirely tied up in what I did. This wasn't particularly imposed on me by others, but something I adopted at a very young age. As a very quiet child, I also felt I would be noticed if I did more around the house, or helped others more. (Yes, this was noticed - but only when I left home!)

I can't fully explain how peaceful and relaxed I am now about what I do or don't do. It's so wonderful not to judge myself based on my physical accomplishments.:In bed:

I don't know if any of this helps, but I hope so.

 

[Carrigon]

Some of us will NEVER accept what this disease has done to our lives. I'm not the type to roll over and die. I will never stop wishing for my health back. I will not stop being upset that I can't do things. Some of us are just different. I think it's great for those who can accept and find peace, but I am a fighter and a survivor. And I can't do it. I've had this for 21 years and I still will never roll over and accept that this is it. Even knowing what I know now. The real truth of it. The vaccines caused it, the damage is permanent. I still have hope that some immune modulator will give back the energy someday. I don't know if anything will ever reverse the damage, but there are those who did claim that Ampligen worked while on it.

Maybe I've survived this long on anger at the disease, I don't know. But I'll never go peacefully, I'll go kicking and screaming. If that means a lifetime of discontent, then so be it.

 

[hurtingallthetimet]

hello carrigon...yep my conselour keeps telling me i need to accept being ill....its hard to accept but im trying...im angry at everything ive lost also...and i daydream and miss my old healhty happy life..who would want to live like this? its hard to have to live in a world that doesnt accept our illness most of the time...maybe if the illness were more respected and excepted? ive been made to feel ashamed and embarassed for having these illness...i know im too sensitive but its hard to just let it roll off my back and go on...

i know weve both {at least i think it was you, sorry if ive forgotten and gotten you confused with another poster} have posted about being asked by family when are you going to get a job? etc...its funny im so confused my conselour upset me so much last month visit...remarked my being a victim...etc..its in post i posted venting somewehre...and this last time i flat out said i want to know how i can get back to work..to feel worthy..and the conselour said she didint think i was ready and able to work at this time...im confused by all that...but anyways i saw your thread again and wanted to say that i think you do help alot on the boards...you seem truthful and kind and that is vouleentering and helping others...at least thats my thoughts...

a message can mean so mcuh when someone is venting and hurting...this is the support i have...the suport groups im on...and youve helped me....so thank you for that : )

thank God i can take my pain medicaitons/morphine and lean back in chair...in pjs and muscle rubs to come on computer..though i hurt often times so badly afterwards as i know most do...at least thats one thing the illness hasnt taken is the support groups...i just wish i could still type spell and format to do something to bring in money...guess we cant have it all with these illness...yes some of my anger and not accepting comeing out again..

take care : )

 

[SickOfSickness]

I've had this for 21 years and I still will never roll over and accept that this is it. Even knowing what I know now. The real truth of it. The vaccines caused it, the damage is permanent. I still have hope that some immune modulator will give back the energy someday. I don't know if anything will ever reverse the damage, but there are those who did claim that Ampligen worked while on it.

Maybe I've survived this long on anger at the disease, I don't know. But I'll never go peacefully, I'll go kicking and screaming. If that means a lifetime of discontent, then so be it.

IMO we have to take breaks from the struggle. It is far from giving up. It is saying for a week or month you will try to have the accepting attitude of your limitations. Then go back to the struggle. Easier said than done, but I burn myself out thinking about supplements and all, so I am forced to take breaks. It is better to proactively take the breaks. Accepting is not giving up if done the right way. Again easier said than done. I try but I have that Type A personality.

 

[*GG*]

IMO we have to take breaks from the struggle. It is far from giving up. It is saying for a week or month you will try to have the accepting attitude of your limitations. Then go back to the struggle. Easier said than done, but I burn myself out thinking about supplements and all, so I am forced to take breaks. It is better to proactively take the breaks. Accepting is not giving up if done the right way. Again easier said than done. I try but I have that Type A personality.

Yes, they way Carrigon explains things, it's like banging your head against the wall continuously, your going to get brain damage eventually. I wasn't suggesting giving up, just being more realistic!

GG

PS I haven't rolled over, and will probably live longer due to that, and regaining my health after being sick for 7 years, and been doing better for the last 2.5 years! I am a fighter and survivor also, after having a massive flare up 2.5 years ago, having lidocaine infused into my bloodstream, and being out of work for nearly 3 months! I got back on my road bike last summer and have been on it again this year, still not like I used to bike, but I still find it enjoyable!

 

[taniaaust1]

Some of us will NEVER accept what this disease has done to our lives. I'm not the type to roll over and die. I will never stop wishing for my health back. I will not stop being upset that I can't do things. Some of us are just different. I think it's great for those who can accept and find peace, but I am a fighter and a survivor. And I can't do it. I've had this for 21 years and I still will never roll over and accept that this is it. Even knowing what I know now. The real truth of it. The vaccines caused it, the damage is permanent. I still have hope that some immune modulator will give back the energy someday. I don't know if anything will ever reverse the damage, but there are those who did claim that Ampligen worked while on it.

Maybe I've survived this long on anger at the disease, I don't know. But I'll never go peacefully, I'll go kicking and screaming. If that means a lifetime of discontent, then so be it.

((((hugs)))) Acceptance does not mean that one stops wishing they were healthier. Those who accept, havent necessarily given up. I accept my illness but that dont stop me from trying different things to get better etc.

but you are right that we all chose what our life is to a degree.. we can choose how unhappy or not we are over certain things. Every person does this, be them healthy or not.

 

[K2 for Hope]

Carrigon, IMHO, I think all the posting you have done IS volunteering. I know it's helped me ALOT. I am personally greatful that you are here and speak the things I'm thinking.

 

[Misfit Toy]

Whatever I read of your's Carrigon, always sounds good. You are like others said, volunteering a lot by being on here. You, for having gone through what you have gone through, have such a sound mind too. I really give you a lot of credit. You are very strong. I am like you, I will go out of here kicking and screaming.

 

[November Girl]

I think we're all survivors, not victims.

This is such a devastating illness to live with, there's no one size fits all approach to coping. It varies between individuals and between different times in our lives. I've dealt with this in myriad ways over the past 35 years, some good, some bad, and some just necessary at the time.

In the last few years I've decided to quit chasing the life I want and/or used to have. Instead I want the best life I can have right now. That means admitting to myself - and to others - the actual limitations caused by my illness at this time. It means celebrating the person I am and the life that I have. It means not comparing my accomplishments against other people's. Of course I don't always manage to do this, but for the most part I do. My health is actually improving in miniscule increments now that I don't force myself so much when I should listen to my body instead.

I sometimes find myself mourning over things I can't do with friends and family. When that happens I let myself feel the hurt, then go on. That may not sound like much, but my main way of coping for years was a whopping case of denial. During that time I overdrove my body, and got worse. But at least I didn't psychologically implode!

These days, as much as possible, I choose joy and contentment. Life's too short to be angry all the time.

(YMMV)