According to The Free Dictionary, unpredictable is defined as,
Difficult to foretell or foresee.
Something difficult or impossible to foretell or foresee.
For me personally, the unpredictable nature of CFIDS is one of the most challenging obstacles I have to deal with everyday. It is…
not difficult just on a physical level, but on an emotional level as well.
A few years ago, I had a woman at the church I was attending tell me that she would not allow me to volunteer in her department because I was not dependable. I felt like someone had cut through my heart with a knife. I cannot remember every having been told prior to that conversation that I was not dependable. As a matter of fact, as a type-A personality, being dependable was something I strove for and cherished.
I was very hurt and withdrew into myself for quite a while after that. It was a year or two later that I suddenly realized, she was right. Because of the incredible unpredictable-ness of CFIDS, I had indeed become someone people could not count on, especially for long durations. To this day, that is one aspect of living with CFIDS and FMS that still has a tendency to bother me to my very core.
The inability to predict what I can and can’t do at any given moment, is a serious challenge to say the least. It’s not like I can tell a friend, I can hang out with you any day but Friday because I know on Friday I am going to have a crash and it will take me five hours of rest to recover from it. I so wish! And that is what makes my life such a challenge every single day.
Monday night I decided to attend a political activist meeting (Tea Party) and since I was feeling better, I thought I could manage the dinner and an additional hour for the meeting. I was having a great time during the dinner meeting new people and chatting up a storm. About half way through the meeting, however, I started feeling my energy levels start to slip. By the time the meeting was over and my friend and I were talking with the leaders, I noticed I couldn’t find a comfortable standing position. I kept changing legs, shifting my weight, and being antsy. I finally pulled up a chair, apologized to my host, and sat down.
By the time I got home, I headed straight to bed. My body felt like a cardboard box that had gotten wet and was going to give out at any moment.
This morning I felt better and so I thought I would take Dekker for a short walk since we had blue skies, lots of sunshine and 75 degree weather. Again, the energy I had when I started my walk with Dekker petered out about 10 minutes after we started, so I had to take a break and sit down. Once I had soaked up some great sunshine and felt my energy start to creep back up, Dekker and I headed home, where I promptly did the ‘CFIDS recline” in my chair-and-a-half. I was wiped out.
I also started getting pain across my shoulders and right between my shoulder blades. Is that not a pain! Well, yeah it is (LOL) but it is an additional pain because I can’t reach back there to put Tiger Balm on it to calm things down.
I have actually resorted, in times past, to putting the Tiger Balm on my t-shirt in the exact spot that would line up with where I hurt between my shoulder blades, put the t-shirt on and then find a door frame that I could lean against so I then could rub in the Tiger Balm. No joke! I can only imagine what I looked like rubbing away on the door jam! Yikes! Thank God, there is not video camera recording my every movement!~ 
Anyway, I’m not sure what the answer is to dealing with the incredible unpredictability of CFIDS. I have learned to be flexible and go with the flow, but I often wonder if there might not be a better way to deal with the unpredictability. How do you deal with it?
Determined to continue forward,
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I had a recent similar experience when I attended a funeral last week. I was fairly determined to show my respect by walking from the hall to graveside and back, but I knew that would pretty much finish me off. I asked to the hall staff to keep a seat for me, and just made sure that people knew I couldn’t just stand and chat infinitely.
It would be lovely to be able just to forget your ME for an hour or two, but it costs so much in payback later. Presumably your political friends are like minded folk who would be perfectly happy to make allowances for your condition – I think you just have to be upfront about these things.
The events I attend most often that involve travel and being in strange surroundings are poultry exhibitions. I enjoy them as it’s a chance to keep in touch with fellow hobbyists, but they tend to quite long days for me. I phone ahead, explain my situation, and ask if there is an area to rest in when I need to. People are invariably delighted to help. You have start from where you are with these things.
.-= Richard Lucas´s last blog ..Employment and Support Allowance =-.
Richard – Thanks for coming by and sharing your thoughts. You are so right. I need to plan ahead for the things I need. Which I actually did at the end of the meeting.
Poultry exhibitions? That sounds interesting? How did you get into that?
The poultry thing? Well, when I first became ill and was stuck at home, I wanted something to do. I used to keep and exhibit cage birds in my teens, and I decided to start birdkeeping again. Poultry seemed a good choise – easily available, and productive. Now, of course, I’ve come over all competitive, and I’m planning to breed and show birds. It’s a good hobby for PWMWs – the birds only need a few minutes “maintenance” a day, plus a weekly clean out that I can delay for a day or two if I’m not well. I get lots of lovely fresh eggs as a bonus – the store bought one taste pretty insipid by comparison.
.-= Richard Lucas´s last blog ..Employment and Support Allowance =-.
You have unprecedented humility, Dominique. Not many people would be willing to tell that door frame story. I think you should get a friend to video it and put it on America’s Funniest Home Videos. You might win 10K or so.
Seriously, you just have to do what you can do and let the rest go by. You have to deal with your disease as best you can and it sounds like you are doing a pretty good job of that.
.-= LD Jackson´s last blog ..Cartoons for the politically inclined =-.
Larry – I don’t know if I can go that far! Having millions see me do the Tiger Balm rub might be more than I can handle. But then again, 10K might assuage me momentary embarrassment!
10K would go a very long way in reducing the embarrassment.
.-= LD Jackson´s last blog ..Ann Coulter’s Ottawa speech canceled =-.
Larry – Yes it would!
Don’t double dare me or I might just have to do it!
Dom, you expressed what its like to live the “unpredictability” of CFS clearly. It is one of the most frustrating, social life crushing parts of this illness. I deal with it the same way you do…go with the flow. Before an event I hope to get to, I prepare myself that there’s a good chance I won’t be there (even though I’m trying my darndest to be) so that I’m not as disappointed.
Here’s to us unpredictable, but oh so to the core dependable ME/CFSers!
.-= Kerry´s last blog ..Ubidoogles and gosh darn it! =-.
Kerry – I love that! “Here’s to us unpredictable, but oh so to the core dependable ME/CFSers!” at summed it up really well!
I’ll have to think about that “how do I deal with unpredictability”
I can think of a couple things – I don’t ever pre-plan (accept
of course for med apts-which I send up a prayer I don’t have
to cancel. I recenlty was asked to vol. for two different
jobs at church. They thought if I was just sitting down I could do it.
I had to explain that they needed someone they could count on-
explaining why that’s not me. Ouch! No only do I need to pace my daily energy “budget” (and that is unpredictable!)
but I pace what I put on my calendar (spreading med/dental appt.
out a max of one per month; hoping nothing else comes up)
This is a tough one.
I hardly plan for anything (sounds depressing) and if I do “plan” I do what
Kerry does — the plan is always tentative in my mind (I think I
hope but probably I can’t”) Sounds depressing, but actually is
less disappointing than thinking without that contingency in place.
Quite a many years ago I would clip items out of the paper
and put it on the refrigerator; hoping I could attend some event.
As I came to see that the date would pass by and I could not go
I stopped posting on the refrig. It was too disappointing to
take it down and throw it away every time. I have learned to live with
disapointed better than with loneliness.
When I do win I think it is God’s mercy – I was able to be there
for the whole day until Shelley had my grand daughter at 9 PM The baby
came before the time I knew that I would just have to leave.
I had provisions for the ride and wheelchair assist and a comfortable
waiting room. We often don’t get to form wonderful memories
being so housebound so when something like that happens not only
is it a wonderful blessing but it is also a treasured memory.
Patricia – Very true. I have found that I will choose to push beyond my energy envelopes if I consider the time and memory very important. For instance, my daughter’s wedding. I have no doubt that I will be pushing but I would not miss that for the world. I am bummed I may have to miss the bridal shower as it is.
I have come to understand, at least for me, it is important for me to make sure that I don’t withdraw too far because I need the relationships I have in my life. Of course, that is not always as easy as I would want.
I’m glad you came by and posted. I miss you when you aren’t around!
Thanks for missing me. I look forward every day to see what you
are thinking and talking about. I also stretch for the few people
in my life. Miss me? Gosh I thought I was the one who over does
it in responding. So you went to a “Tea Party” I’ve been hearing
a few good things about the passed health care bill, but also some
scarey things – like big cuts to Medicare Med Advantage Plans -
in other words the extra dental/eye vision benefits being droppped and who
knows what else. Also hearing doctors will back out of treating
Medicare patients, the gove. will decide if you have the right/good
enough policy and fine you if you don’t?! It truly is difficult to know what is going
to happen. Each side rants and raves and I just wonder how much
politician’s are there for the people and not for the lobbyists who
help them get re-elected.
I understand about the going to do something and 10 minutes later
feeling like that wet card board box about to disintegrate – unique
way of expressing it. You are making such a difference in
people’s lives (more than you might realize) I consider you a new friend
that I can “talk to” and “listen to” Hip Hip Horray
I’ve received a bunch of e-mails today saying Renee did well
with the surgery. I hope and pray the recovery isn’t extra difficult
because of her Lymes disease. So fun to stop by and chat back
at you.
Patricia – Thank you for letting me know that Renee is doing well after surgery. That is wonderful!
I will say this about healthcare. Don’t believe anything you hear in mainstream media. The passing of the Healthcare Bill was a very sad day for America. We need to make changes and tweak our healthcare, but what Obama and the Dems did had nothing to do with healthcare. It was a move to fundamentally change the foundation of America. I cried when I saw the finally tallies and that it had passed.
I’m really glad that you enjoy coming by. Now I have to go back and lay down! Ha ha!
Wow, Dominique!
I really didn’t think that other people dealt with this issue. I thought it was just me. What a relief! I disappoint people (and myself) all the time. And I am also a perfectionist who wants to be dependable and make people happy. Having to cancel just makes me nuts, even though I have to do it fairly often.
It’s sad, but I don’t have close friends right now because of that. I was always the one doing things for everyone else, and when I couldn’t anymore, people moved on.
I guess now I just have to make a different kind of friend. LOL.
It’s always a joy to see your posts. Just seeing how you stick to writing consistently inspires me.
With love and hugs,
April
.-= April´s last blog ..The Thankfulness Game =-.
April – You wrote, ” I was always the one doing things for everyone else, and when I couldn’t anymore, people moved on.” Wow! Can I relate to that statement! Totally get it.
I don’t know, exactly, what the answer is to that. Friendships take a lot of work and understanding on both sides. I have lost many, many friends over the years. I guess now I just thank God for the good friends I have and trust if that changes that God will bring some new ones.
I think I have been luckier than most because some of my friends have been through things that give them the ability to relate to my circumstances and me to theirs and so that helps a lot.
I always enjoy seeing your smiling face! How have you been? Are you doing okay?
April you said a different kind of friend – that is so true. When
well my friendships were “doing stuff together” and even some
were close in heart- but even one very special friend just moved on.
She actually said to me on the phone “The trouble with you Pat,
is that I have to come to you!” That hurt as we had a 12 plus year
friendship and I did a lot of the driving (she had no car). Basically
someone I thought would be a lifetime friend fizzeled out on me
because I was inconvenient. Looking back I could see hints of that
but I overlooked it because she had truly gotten into my heart.
The friends I have now all have the limitations of chronic illness
and friendship is now of the heart. We talk on the phone or e-mail
and those so ill try so hard to keep in
tocuh and with words do as much as possible to share our thoughts,
concerns, problems, and help whenever possible.
These are friends in spirit and of the heart that keep us
connected. I must admit though I sure miss having a close,
best friend in person. My best friend close in heart moved too
far away in distance, but not away in the sense of the heart connection
Once we get “de-peopled” our limited lives make it very hard to
make some new friends that are in person. Sometimes I wonder if
God’s plan for me because I’m alone 90% of the time might be that
He wants me to have a much closer walk with Him. God knows though
we need other people so it is a puzzle to me why I don’t have
just a couple, regular, close friends “in the flesh”
I’m so glad Dominique that you have some friends with life experiences
that help them understand you. That is wonderful. Sometimes
it is so easy to feel I’m from Mars and the well world of people
are from Venus. It takes so much translation for them to
“get” me and I don’t try to explain it a lot – just a little if
someone actually asks me a genuine question.
I’m with you, Dominique – the unpredictability of CFS is the worst! For me, it’s not being able to volunteer in my kids’ schools anymore. I really hate not being more involved, not being able to go on field trips or help with fundraisers, etc. My close friends are very understanding and know that plans with me are never solid until the last minute, but family and friends that I don’t see very often take it personally when I cancel at the last minute.
There’s not much we can do about it, though, is there?
Sue
.-= Sue Jackson´s last blog ..Quote It Saturday 3/27 =-.
Sue – This is the hardest part of the illness for me as well. Especially with my family. Even after 20 years they still don’t get it and think it is a slight against them.
I have been a little stressed lately because I know the wedding will be a huge push beyond my energy envelopes with very little understanding. But I would not miss my daughter’s wedding for anything. I will just have to deal with the payback when it’s over and done.
Hope things are going better with you.