Making decisions when you're chronically ill is tough. Here are some looming on the horizon:
- should I go back to school in the fall (means about 10 hrs a week of sedentary work from home, often done from bed).
- should I go on this camping trip I have been planning (dreaming about) for a year now. It's planned as well as a sickie can plan.
- Do I go out to lunch with a friend I haven't seen in a year?
- Should I travel to visit family in the fall, risking a relapse?
Every week I make decisions that may impact my health (fair enough, some aren't as big as these). Sometimes I make a decision to do some activity and I pay for it royally.
For example, last summer I attended a seminar in July and got very sick. I've been mostly housebound and often bed bound since. Was it worth it? Is suffering the worst flu of my life that lasted a year worth it? I guess i have to vote no.
It's interesting what people from the outside think I should risk. I very often hear "You should get out more", or if I'm suffering consequences, "but it was worth it to do X right?". Obviously they don't have to live the consequences.
That being said, sometimes I risk doing stuff and it works out fine. This makes it even harder to make decisions about what I should and shouldn't risk doing. It's like a roll of the dice. I never know if and how long the aftermath will last.
And sometimes, I go down hill and I just don't know why? When I crash or relapse I ask myself, "Was it some activity I did? Was it a stressor? Is there a virus going around?" (even when I don't get said virus, when there's one going around, the M.E. is usually worse).
July was my best month in a year, easily, hands down.
A week and 1/2 ago I went down hill. I'm back to feeling terrible. Very very viral and fluy. I fainted this week and have blacked out lots (without fainting).
- sore throat, referred ear pain, very heavy fluy breathing/chest ache, weakness, shakes, diarrhoea, painful lymph nodes in my arms.
I'm supposed to go camping Thurs. I'm still considering it. If I go will I be in bed the rest of the year? Is it worth it? I'm in bed right now anyways.
If I'm this sick at the end of the month I will have to, once again, take another semester of medical leave....I guess that's not a hard decision to make.
And I'm just so tired. Tired of being sick, tired of trying to make the "right" decision, the best decision for my health. The one that maximizes pleasure and life experiences while minimizing this suffering.
And did I bring this on myself? Was it the fact I went to MN in July and made the most of my better days last month? Is this crash/relapse the result of an accumulation of doing more in July?
Yes, all so familiar here too. As you know we are in the midst of helping our oldest son make similarly big decisions - start college in 3 weeks? Attempt dorm living or live at home? Full-time or part-time? How many classes can he actually manage after this horrible year he's had?
ReplyDeleteThere are no easy answers, are there? As you say, it comes down to weighing the potential consequences. But there's also an element of predicting the future. Now that Jamie is doing a little better, will he continue to improve? Will winter be as bad as it was last year? I wish we had a crystal ball to see what is coming!!
I wish I had some advice to offer, but as you know, no one can make these decisions but you. Same here in our house. My wish for you is that you are able to find the right balance between doing what you enjoy and minimizing negative consequences.
Thinking of you...
Sue
Thanks Sue,
DeleteI know Jamie is going through similar at present, however, I got to do the whole Uni thing as a young adult so that part is not the same at all. But having a really rough year....makes it even harder to make these decisions because I don't want another one that bad EVER. Thanks for your support.
So sorry you are going through this, upnorth....trying to outguess an unpredictable disease. Like Sue said there are no easy answers. It is so unfair. So disappointing to do better for a month and then be laid up again..... There is no rhyme or reason to it all, just a very delicate balancing act. Hoping and praying your energy returns and decisions become clear for you.
ReplyDeleteI think having a better month than returning to this made it even harder Renee, thanks for your kind words...I'll take the decisions day by day I guess, what else can we do right?
Deleteupnorth, sorry to hear that you went down hill again.
ReplyDeletei am familiar with all your questions. the continuing failures made me eventually put my health above everything. i was a person who put spiritual needs above everything before, but lessons have been learned, i now understand for me, physical condition is really a foundation of everything, literally. my years chronic condition could be simply explained as paying back what i owed to my body.
i had lost friends, due to simply being unable to go out with them, or dine with them. i gave up my academic dream, simply because i could not have enough energy to work on preparation (it hurt my self-esteem, because once i was one of those prodigies). i lived for many years a friendless life. people may pity me but i know i had no choices. and i am totally ok with that now.
i know it's hard to chose the right answer, all i can say is, if i were you, i will give up those things. nothing is more important than health, if we want to life a decent life.
Yun yi, yes sometimes I wonder about doing even less (although I also wonder if that's possible it seems I do so little already)
Delete....I guess everything is relative, though....it's that inner voice, you know...the one that wants to be useful somehow in this world.
I know what you mean about the friendless life, my friend pool has diminished significantly and even the ones I still have I have trouble maintaining through bad health and distance.
You sure hit the nail on the head as they say. I have been lucky this year where most of the times if I choose too much its a week rebound...not months...but I think the bigger point you made so well is that constant mental burden of weighing so many simple decisions that once weren't even given a thought and how it is very difficult for others to understand living within this risk/reward domain. This past weekend I made two events and it was hard to make the choice to leave and take a to go dinner after my niece's dance recital because we were sitting outside - the hot humid weather had broken - it was all so normal - but I knew even though I felt good in the moment - I had done so much that day I couldn't push it - so despite being present I still felt that disappointment of being the person that leaves...just know you have others that understand and hope you are feeling stronger very very soon.
ReplyDeleteoh yeah- sometimes on my worst days i find it helpful to think in terms of getting to the next minute - or the next 10 - then an hour etc...sometimes i know myself when i wake up and its the same thing all over and i get so overwhelmed, and i take a breathe and think - just see if you can move your pinky finger - and go from there rather than looking at the entire day ahead - and then see if i can sit up etc..hope it helps.
ReplyDeleteSuch sage advice hkd...just trying not to think past the near present on those bad days. It's nice to know I'm not alone in the agony of having to constantly weigh everything I do. Thanks for commenting.
DeleteHi Upnorth, I'm wondering if you went on the camping trip. I remember reading about your college return to grad school last year and feeling so badly for you - and now that decision has rolled around again. Like all of the comments I live a life of super vigilance beginning the minute I wake up with the question, can I manage a shower today. Well, I can if I don't have too much else to do in the morning but never two days (sometimes longer !!) in a row. And then next I'm looking at all the 3X5 cards I toss on the floor, each card a note of something I have to get done. The same cards can lay there a lont time ! I tend to overdo and loose my vigilance if I'm with another person, like at a doctor's office and the nurse is walking down the hall with me and I try too hard to keep up with her instead of walking at my snail's pace (if I don't have the wheel chair and it's a short walk). I look back over the serious crashes I've had where I didn't recover or partially and it usually involved having another person with me and I was trying to keep up. Well, I'm going to drag myself to the TV and watch the closing ceremonies of the Olympics, that has been a wonderful diversion, gets me through the slow evenings. My heart is with you upnorth. No words of wisdom here, but there's comfort in community and that is something we're creating with every post right here. It may be just comforting words of you're not alone or I know a bit about what you are feeling but something a little bigger than our individual posts happens too ---- and I just lost my train of thought !!!! ha ha. I wanted to say something about community and the voice of the community -------- lost the words !!!!
ReplyDeleteOff to TV land. Maybe I'll get my thoughts back later. Thinking of you. And sure hope you are feeling better.
From Leah
Thanks Leah, and you're right about community. I can't imagine how I would 'deal' with this all if I didn't know others were dealing with not only the same or similar illness, but also all the emotional and mental stuff that comes with it. I think you are right about the other people. It's not only keeping up for me or overdoing it, it's also just not wanting to be a burden or 'stand out', so I just do stuff sometimes I know will hurt in the long run. Tough...
ReplyDeleteThanks for sharing...always nice to hear how others deal with some of these issues.