Wednesday, November 24, 2010

On the Chronic Fatigue Syndrome front ....

Frustration....unpredictability....more frustration

A recent Drs. visit revealed I'm not doing as well with this illness as I had thought (or was that I had hoped?). That was followed by some strict warnings to change my ways, or else.


One thing that frustrates me the most with CFS is the unpredictability of it all....and it's unpredictable on so many fronts. (I know many CFS sufferers struggle with this unpredictability part of the illness as well. Dominique over at 4 Walls and a View wrote a wonderful post on this very topic)

Things like the unpredictability of:

--not knowing how much energy will I have today, tomorrow, next week or even in the next hour (and it can vary that much from hour to hour)
--not knowing when a crash is going to happen.
--not knowing what exactly causes a crash
--not knowing how long a crash will last.

Now, I'm not talking about huge amounts of energy requirements...I'm talking about energy levels for daily tasks that most people take for granted. Things like grocery shopping, or vacuuming, standing, or lineups. I've just recently started going into grocery stores and helping Larry with groceries...but when it comes time to check's out to the van for me.

Most days big stores like Costco are out.

Or walking. The kids are taking swimming lessons...I'd love to walk to the end of the pool to watch them...but each week so far, I've been unsure if I'd actually make it to the end and back again.

One day, I'm able to do most things (like going out) while the next, moving around the house is a challenge. Not being able to plan for these days, makes it even more frustrating.

This was the case with my last major crash. It was last January and I had been steadily improving health-wise. The kids had skating and the arena was equipped with a wonderful indoor track up over the rink area. I thought what a great idea...I could walk around the track and keep an eye on the kids at the same time. On that fateful day I walked into the arena feeling better than I had in a long time (at least a year) and yet left the arena barely able to walk or drive home. When I got home, I literally collapsed into bed and barely woke up for two or three days. That was the start of a crash which lasted six weeks...and a long six weeks it was. The phone did not ring, the only people I saw or talked to was Larry and the kids, and I hardly got out of the house (except two or three rides into town but I did not get out of the car once in town). Most of that time was spent in bed. The household chores fell on Larry and/or the kids. Suppers became frozen chicken fingers and fries...or other similar easy fare that Brittney could do. Each night I went to bed hoping the next day I would wake feeling feeling better. Thankfully, Tyler could drive. He was able to take the kids to piano lessons and skating.

While this not knowing is frustrating for me, it is even more frustrating to adequately explain it to people. They see me out and think I must be better....except they didn't see me two days ago when I couldn't get out of bed and they won't see me if I happen to be that way tomorrow. They don't realize, I may have been 'saving up' my energy for the last day or so in order to be out for that particular day and they don't realize after my afternoon out, I will head home where I will need to rest for the remainder of the day. I don't go out when I'm at my worst (partially because I'm not able, but partially because who wants to be around someone who can barely remember their own name, let alone carry a conversation...brain fog is something else with all of this). Sometimes, I think I should take pictures of myself when I am at my worst or better yet...actually go out! (That would surely raise some eyebrows) Then I try to remember they aren't being intentionally mean...they simply don't understand the disease. The education is just not there and there are so many false ideas of what CFS is or isn't ... or what a person should be like/do/not do when they have it. (This type of thinking/questioning is as frustrating for me as the question homeschoolers often hear...."What about socialization?"....argh...)

I have found if I can sit down while doing things, I am able to last longer (not as long as I once could...but enough to do what needs doing). Things like making supper, folding clothes or doing chocolate are still doable. So, as long as I am not crashed....not all is long as I remember to pace myself in order to not end up crashed. Once I'm crashed's anybody's guess how long it will last (another factor of CFS).

I recently watched an episode of The Golden Girls in which Dorothy had CFS. While I watched the shows, it was great to see it portrayed so well. Everything she experienced, right from the treatment of some Drs., to the reactions of people were so bang on. It was great to see something where someone actually 'gets it'. I was nodding my head so much throughout. occurred to me. Wow....those shows are over 20 years old. We haven't made very much progress in 20 years. Shocking that is. Many people 'in the know' (CFS researchers, CFS Drs., etc) feel a breakthrough in the treatment or cure of this illness is on the horizon. Let's hope....because it's about time! A really good place to start would be renaming the disease with a name that more accurately fits the illness. That shouldn't be difficult....almost anything would be a better fit than "Chronic Fatigue Syndrome!"


Jacqueline said...

I can only imagine how frustrating it must be for you. I wish there was something I could do to help. I will do what I can, pray - for you, for understanding from others, for peace for you all.

At Home on the Rock... said...

Thanks, Jacqueline...I really appreciate the prayers (for me as well as for others). I am thankful for your understanding and for your friendship

Renee said...

I was surfing a bit tonight to realax before bed...the family arrived this afternoon and left for the hotel and swimming tonight.
Our kids get it..our illnesses and the ups and downs of it. I know some families don't and it is hard enough when the public doesn't get it. Your post really touched my heart and reminded me of how unforgiving CFS/ME can be. I am really sorry you have had such a tough year. I truly hope that the changes your doctor wants you to make will make a big difference in your health levels.
It was just a short 2 months ago I was on the sofa and feeling awful...and now I am walking those few minutes and feeling good....Still, I am always waiting for the surprise of a crash or relapse. My one friend in our support group says, "Feeling better is dangerous" because we so easily forget what pushing does to us!
Not very challenging. The grief we feel over the losses we experience over and over is so hard.
Sending gentle hugs and prayers your way.

Harrison Family said...

You are always in my prayers Linda.

At Home on the Rock... said...

Thanks for your very encouraging words, Renee. Waiting (while hoping it doesn't happen) for that crash is the hardest part. Trying to balance onself by proper pacing , without over doing it, is tricky.

At Home on the Rock... said...

Thanks, April.

Justme said...

I don't know much about CFS, though I hear many people talk about it, and always the frustration comes through. I can imagine how hard it must be for you. We'll keep you in our prayers here.

At Home on the Rock... said...

Thanks, Justme :)

dominique said...

For someone who said she was unsure of what to say or how to say it, I think you did a wonderful job. Thanks for the shout out by the way.

The unpredictability is the most challenging by far. How do plan for an unplannable event? Especially when the unplannable event always comes in varying degrees of incapacitation.

It's so easy to say we will pace, rest, reduce but in reality that is so much harder to put into practice. And what many people -doctors included-don't seem to understand, sometimes the relapses/crashes are not even of our own doing but because the weather changed, the virus in our body flared up or for no unforeseeable reason at all.

I'm glad you put words to how you were feeling and shared it with us. I think THAT is one of the ways in which we can cope - sharing how this illness touches us.

I'm really proud of you and I'm glad we have become friends. You have brought much beauty and sunshine into my life!

Hoping that today is a better one for you!

At Home on the Rock... said...

Thanks, Dominique! You are right on about trying to plan for crashes (or allow time for them to happen)....and many times they are not of our doing..which makes it even harder.

I am glad we've become friends as well. :)