The Chronic Fatigue Crutch
October 28, 2007 by laura
Filed under Diseases & Conditions
Who says that you can’t have a life with Chronic Fatigue Syndrome. Of course, its going to be different than before you had it. A life is achievable though. Life is what you make of it. So you were thrown a curve ball. Everyone has struggles they have to overcome. Can you rework your obstacles?
There is no expression that I hate more than “suck it up”. I still get defensive when I hear it. For a long time, those words were told to me, by a family member. It really bothered me that someone in a support role, thought that as long as I put a smile on my face, and put forth some effort- things would get better.
Guess what, she was right. It didn’t make life easier one little bit. But, it did let me know that I hadn’t lost the ability to do anything that I set my mind to (within reason). I stopped using CFS as my crutch, and started turning ideas around on its head. I started taking control of my illness. I stopped using it as an excuse. What’s more, I stopped identifying with being sick.
Start examining who you are- where does CFS fit in?
My name is Laura, and I am a friend, a sister, an aunt, a daughter, a teacher, a business owner, a student, an employee, a blogger, a musician, a consumer, a volunteer, a lover of animals, a traveler, and about 150 other things. Where does being sick come in? Well its very near the bottom of the list.
Yes, I have CFS.
Do I let it get to me? – Yes, sometimes I do.
Do I live my life, like it controls me? – Absolutely not.
I am Laura. I am not the disease.
Honestly, there are things out there that CFS prevents me from having. I am working on these issues. I can lick them. I have with everything else. Just because you have been handed a diagnosis, does not mean your life is over.
It’s all achievable. All of it.
Tell me who you are.
picture source – flickr
I don’t know. Tenacious. Talented. Loved.
I don’t tend to define myself by illness, but perhaps because of that, I keep running full tilt into brick walls. School whips my backside? Fine, I’ll take some time off. Time off not change things enough? Fine, I’ll start my own business. Brain fog and energy levels too low for that? Fine, I’ll work on patterns that I can do at my own pace. So far that’s added up to one pattern in the last 6 months. Fine, I really should be working at housekeeping anyway, since DH needs the support to be the breadwinner – the first time I managed to get all the dishes done was two days ago.
At this point I think I’d be better off defining myself as ill – I’m in danger of defining myself as someone who “can’t”: can’t keep an apartment clean, can’t keep up with creative persuits, can’t work for myself or others. I suppose that’s what you are talking about with defining yourself as ill, but I think I’d rather be ill and tenacious, than “me” who can’t do anything properly.
Might have taken this off in the wrong direction – apparently I’m having a bad time of it recently!
Awww Jenna.
Hmmm how about taking “can’t” out of the equation altogether.
Start smaller – and use concrete definitions. Like I am Jenna, and I am a wife, a friend, a knitter…whatever you are.
Believe me I know what its like to have CFS and related stuff whip your ass. And its really hard to pick yourself up and think of the positives. Not easy to say no to the pain.
Just think a little smaller…its not at all about finishing the stuff you start. The fact that you start things at all, is great.
How about I am Jenna, and I am a starter…..
now finish that thought
Ok, who I am….mom, wife, crafter, piano teacher; I love animals, photography, reading, movies; I majored in English and minored in Music in college.
That being said
After having CFS/FMS for 12 years (this month is my “anniversary”) I still hit the wall. I have to give up many things in order to do others, and I hate that. I suppose that fighting against it is a sign that I’m not submitting to it, but when something affects you in so many ways, it’s hard for it to not define you.
I get what you’re saying, and I admire your strength (cool picture too, btw). Which reminds me, I need to find a kick-ass cane LOL
Angel,
Do not get me wrong, I am not always so strong. Especially this year. But, I am not about to let CFS say what I can and can not do. The trick is to just adapt the parts that you loved from your “before CFS life” into your “after CFS” one.
I used to think of things in the “giving up” sense. Six months ago, I gave up my teaching practice…but last month I took steps to change what I had. My teaching business is not at all the same – but I adapted it, to work for me. Yes I miss the old one like crazy – but for now this one is working. Doing this made me feel a lot better about myself….
I used to love seeing friends and going out several times a week. Now I really look forward to spending time with great people once or twice a month. Do I wish I could do that more? Yes…but for now its necessary to cut back. I just really really enjoy my time with them a whole lot more now.
Living with CFS or any chronic illness is all about finding a balance. Once we are able to do that, you (at least me) stop thinking about how lousy it feels, and start enjoying the present moment. And when that happens, we stop thinking of ourselves as sick people.
I was reading your list -and I think many of the people who read this blog (and me) do a lot of the same activities. OK I am not a crafter (and would never be able to pretend to be). But perhaps we could form some kind of on line book club or something.
It would give us a chance to get to know each other well, as a group – and kind of change the subject for that.
Is anyone up for that???
I’ve just started participating in an online book club with some friends of mine, and I enjoy it a lot. The problem is trying to get the library and the group timing to line up
. I’m certainly interested in trying another one!
Great Jenna,
I think we should do this. Lets give it some thought and pick a start date.
Yeah! I’m up for that. I read all the time. Books, magazines, and mostly journal articles for my work. But I think an online book club is a good idea. We shall have to set longish timelines so people who can’t do much reading can still be involved, and maybe also use some books that are easily obtained as audiobooks. But yeah! Anyone want to volunteer for coordinating this?
oooh audiobooks – thats a good idea.
I can put/slap something together in the next couple of weeks. Maybe we can try to gather on facebook – or organize a skype chat. Although these days my wireless is unreliable at best.
Spread the word though…I think this is a good idea, and I will post some details soon, once I get some details straightened out in my brain.
I echo the audiobooks – I started getting some of them on CD from the library because the wait lists were shorter for them, and found I “read” them much faster. I can listen with much lower energy levels than I can read, and I can listen while doing other things when I am feeling better.
I can do either Facebook or Skype, but in case those prove to be a problem for someone, the way my other group works is a chat on a website – http://www.chatzy.com/. I don’t know how to set up the specific room/chat, as someone else did that, but I can ask if you need!
OK Guys, I set up a CFS bookclub on Facebook.
Its called the Consummate Fiction Society – get it CFS!!!! Ha I kill me!
Anyway, right now its by invitation only. I have invited the CFS2 readers that I have as friends on facebook (I think that’s 3 or 4 people). If I missed any of you, and you want to join – just email me, and I will hook you up.
I will write a post on here, promoting the book club, and we will see what happens.
Jenna,
your comment somehow got lost in my spam folders…good reminder to make sure I always check it. I wonder how many other comments I have lost, because I automatically delete that folder. Will never do that again.
We will make sure that the book we choose is available on audio. I wouldn’t want to isolate anyone, who is struggling at that moment.
When it comes closer to the first meeting we will pick a forum to discuss in. All depends on how many members we get. Right now I think the total is 6.
At the moment we are going to choose a book. So if you have any recommendations, please feel free to suggest something. I am up for almost anything, and would love some help choosing something good.