Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi fellow sufferers
I got diagnosed about 1.5 years ago with CFS.
My first six months were the worst but they were made bearable by the support I had around me.
Now as I get better I am finding that people think I am completely well and that I should be able to increase hours at work etc
My Mum even said to me the other day that I should try and rule my body with my mind. This coming from her was a blow and as she was my biggest supporter it has started to make my wonder what everyone else really thinks. I know I should let this go but it seems to be going around and around in my head. I got into this situation by NOT listening to my body and look where that got me. I finally do listen to my body and I am never going to become deaf to it again.
I am quite well compared to a lot of people out there I think.
I manage over an hour walk in the morning with a slight hill, admittedly the hill part is very slow but I do manage it most days.
I have just increased my hours at work and did 4 yesterday, now today I have a h/ache and do not have much energy for anything. My schedule is to work 3-4 hrs three times a week, so a rest day in between, but you know what?? I think that the reason I am better now is that I have basically been off work for six months and I also know how to listen to by body and rest when needed.
When I have gone to work I usually feel bad the next day or 2 days later. Anyway my point here, is that I seem to be better with physical things, like walking (only walking) than I am with 'brain use'.
Is this the same for others?
I think this is why it is hard for some to understand, how do I have energy for walking but not going to work??
I guess these questions go through my mind too, so I get why others don't understand.
Sorry if this rant was a bit all over the place, but basically I am feeling very very alone with this illness at the moment.
Luckily though I do have a fantastic partner who supports me completely, obviously it would be nice if everyone close to me would.
I got diagnosed about 1.5 years ago with CFS.
My first six months were the worst but they were made bearable by the support I had around me.
Now as I get better I am finding that people think I am completely well and that I should be able to increase hours at work etc
My Mum even said to me the other day that I should try and rule my body with my mind. This coming from her was a blow and as she was my biggest supporter it has started to make my wonder what everyone else really thinks. I know I should let this go but it seems to be going around and around in my head. I got into this situation by NOT listening to my body and look where that got me. I finally do listen to my body and I am never going to become deaf to it again.
I am quite well compared to a lot of people out there I think.
I manage over an hour walk in the morning with a slight hill, admittedly the hill part is very slow but I do manage it most days.
I have just increased my hours at work and did 4 yesterday, now today I have a h/ache and do not have much energy for anything. My schedule is to work 3-4 hrs three times a week, so a rest day in between, but you know what?? I think that the reason I am better now is that I have basically been off work for six months and I also know how to listen to by body and rest when needed.
When I have gone to work I usually feel bad the next day or 2 days later. Anyway my point here, is that I seem to be better with physical things, like walking (only walking) than I am with 'brain use'.
Is this the same for others?
I think this is why it is hard for some to understand, how do I have energy for walking but not going to work??
I guess these questions go through my mind too, so I get why others don't understand.
Sorry if this rant was a bit all over the place, but basically I am feeling very very alone with this illness at the moment.
Luckily though I do have a fantastic partner who supports me completely, obviously it would be nice if everyone close to me would.
Please don't take this wrong but perhaps if you need to work, you should skip the walk on those days so you have the energy for work?
I can't fathom walking for 15 min never mind an hour. Getting through the grocery store is a triumph.
The day / 2 day after tiredness is normal for CFS, it's called post exertional malaise.
Here's some info on it.
http://livingwithchronicfatiguesyndrome.wordpress.com/2010/07/18/how-to-gain-relief-from-post-exertional-malaise/
I also know how exhausting work can be. I went from full time, to part time, and now I don't work, which has helped A LOT. Work for me was too much. Something about too much stimulus, or the stress of interacting with people, it was mentally taxing.
For me walking is beneficial. Walking reduces my stress and is calming, as long as I don't walk too far or try to make it a competitive sport.
You are definitely not alone, and I think it is wise to listen to yourself. I think you were smart when you said I got into this situation by NOT listening to my body. That was exactly me, and I think society rewards people for working past the point of exhaustion.
You know your truth and I think it is awesome you have a supportive partner.
Best Regards,
Suzanne
On my good days I can do alot more walking. I can shop in several stores with little problem but I have to be careful I don't overdo. I read an article, somewhere I can't remember where, that people with CFS have more problems with just standing then walking. It is so true of me, I hate standing in lines, I have to keep my legs moving so I don't stand still much.
If you can work part time & walk every morning, by all means do it. You never know if that will change one day, live within your means but live your life & be happy. Don't listen to the nay-sayers. No one knows how we feel except someone who is ill, so I don't take what someone says to heart because it is beyond their ability to understand. I know I never could before I was ill. Hugs, Denise
I am a lot better than I used to be and even my worst days were no where near as bad as a lot of people out there with this illness.
I feel very sad for anyone with this horrid illness but especially for those that are bed ridden. I am very grateful that I have the energy that I do.
I very much agree that walking is easier than standing or sitting still. I think this is something to do with blood flow??
When I am bad all I can do to feel better is lie down flat.
I don't think you should just let this go. People don't get it because they have never experienced anything like it.
I had a hard time explaining myself at first....ok sometimes now too. I recomend writing down what you want to say and carrying it around with you. Seriously, get it out and read it. You can even include why you have to read it on your paper.
Printing out a description fo brain fog from a cfs website can be helpful. Sometimes people need to see from someone besides you that others go through this.
I think you are spot on about dong better now because of all the time off you had.
When I was still working I started carrying around a bottle of Tylenol. It meant the difference between staying at work or going home due to a headache. Getting lots of water while working helps too....plus it made me need to use the bathroom more often where no one could see me rest my head in my lap. Yeah...I really did that....several times per day.
I also bought 2 bottles of multi-vitamins. 1 for at home, 1 in my desk at work. Then I never had to remember to take it before work, or remember to bring it home. The vitamins helped me get through the day.
Good for you, taking care of yourself. Just come talk to us when others get you down, k?
What I try to do with other folks, is just plan well and hide it well. If I am going to lunch with 2 new friends, I think ahead to what I want to ask or tell them, sometimes rehearse a few topics that I struggle with putting into words and then I ask them a lot of questions about themselves and they do a lot of the talking. It has been working pretty well for me.
If the conversation is going to be stressful or complex, like with work drama, then I will type out my ideas as they come to me (like, you know when you are upset about something at work and you obsess about it all evening haha) and wow, that helps me gain so much clarity it is amazing. By the time I have to actually discuss it, I am calm and my comments seem wrapped in rose colored glasses somehow.
About the physical energy, I've been walking on my own for a while and each time I go out, I add a little length to the walk to make it slightly longer if I feel up for it (it is kind of fun to add a block outward onto my loop). Having my cell with me, I feel more secure if I would fall or get overly tired, I can call hubby. But, only I know how far I have walked, so there isn't any pressure. But, I began by walking one block, like 5 minutes only lol.
When I broke my ankle last year and started walking again, I walked (limped) 20 feet away, then back and no one came out to throw me a confetti parade (I did most certainly deserve one!) and so, they get no place in my mind for their judgement either. No place at all!
Someone on DS told me that another person's mental space is NOT to be the center of my mind. In other words, their wacko thoughts, their negative opinions, etc., have no place smack in the middle of my life or my mind or anything. Wise words!
Hope you are feeling better about things soon. : )
I know it depends on your situation but perhaps work less? And cut back on the walking (although you seem to enjoy it so don't cut it out altogether).
I think about it in terms of rehabilitation, you've got to walk before you can run. The process is much slower for us folk. Also don't feel guilty for having a slow recovery, (it's out of your control, but it sounds like you're one of the luckier ones-next time someone tries to assume you're 100% tell them that its a long process and that you're one of the lucky ones and that some people with CFS can be bedridden for decades-usually the shock value will put that person back in their place) and certainly don't push yourself because others think you're 'cured'.
I've been sick just under a year, and I am hoping so bad that I can be like you this time next year if not sooner! It's good to know that some people bounce back better (don't get me wrong, I know you're not at your full capacity and that you are still sick). It does hurt when people misunderstand this condition and say unhelpful things- don't doubt yourself-if it were a simple 'mind over matter' we'd be better already! It's not! You need to stick up for yourself and point out to your mum that the comment she made is like telling a Diabetic to just snap out of it, or something equally ridiculous!
P.S. Don't get me wrong, I can understand your frustration, I'm not as sick as a lot of people and when my medical team mention how lucky I am and that I really haven't been sick that long I kind of want to punch them in the face. It helps to think you're lucky when you're reminding yourself of the positives, but when you're feeling like crap you don't need it, you just need to think about yourself! All the best!!
Whooda thunk it?
Who wants to waste it cleaning???