As I was once again lying on the couch today trying to get over yet another bad CFS day, I couldn’t help but think about all of the hours upon hours I have spent over the years waiting to feel better so that I can do what? Have another flare and do it all over again. CFS is a viscious cycle. Normally when someone gets sick with the flu, they rest and take it easy and can tolerate the puking because they know in a few days they can go back to a normal life. When someone is in labor they find a way to make it through the pain because they know that at the end of it there will be a beautiful baby to hold. When someone breaks an arm or a leg, they know that in 6 or 8 weeks they will be back to normal and will have the use of both of their limbs again so the temporary discomfort is tolerable. For those of us with CFS we rest, and we rest, and we rest some more and it doesn’t seem to do any good because it seems that the next time we turn around we are back in bed again, unable to take care of our own needs or our loved ones.
There is never an end for us. We are like the hamster in the cage running endlessly on the wheel. Our life is filled with resting up for the next flare for which we have to do what? Rest some more. There is so much I want to accomplish with my life and I have so many plans and dreams for myself. I want to do so many things but with so much time spent in bed, my life is getting away from me quickly.
Today I was feeling so bad I could barely walk back the hall to the bathroom and I was crying because I was so miserable. My husband said, “You need to call the doctor”. For them to do what? To tell me there isn’t anything they can do to help me? I’m tired of hearing that and that is not an acceptable answer to me. The only thing for me to do was to take another pain pill, lie down and pray for sleep to come so that I would be out of misery for a few hours. I miss having a life.
Michelle Wordley says
Sandy, hang in there! CFS means good days and bad days. IT means being positive, becasue our disease is so negative. It means turning to the CFS community for support and encouragement. It means letting your family help and this one is really hard for me. I am a helper not a helpee. It means going, even when you have nothing to go on. It means finding something positive – like your son and focusing on that. Never give up, Jesus is with you through it all and there are better days ahead. We wont talk about the storm clouds – lol. PRaying for you!
I’ll relate my coping strategies in case they may be helpful to some subset of cfs sufferers. I’m under the impression that cfs is a dis-regulation of the immune system. Some people have the immune system become much less active, and have the additional bother of catching what comes around. Mine seems overstimulated, wants to feel like the first day of the flu, with swollen lymph nodes in the throat and on back of neck, body aches. I’ve been helped to sleep effectively with desipramine hcl. With the hypersensitivity to medications, I cut the edge off the tablet each night to get the dosage right for me, took a long time to learn. I have also been helped in recent years with the brain fog by strattera. My doc said ‘ADD’ (no hyperactivity), but I never had it before the cfs in ’91. Helps with epinephrine in the brain. Anyway, I rested for the first six months, always felt ill, but went to work every day and was able to sleep more restfully, but still interrupted. Finally, I had to move house, and I discovered that while moving boxes made me feel horrible for the first hour, once I’d broken a sweat for a while my lymph node swelling diminished, I slept great, and I felt better mentally the next day. Endorphins good. Of course, I had the twice or thrice soreness anyone else moving boxes would have. I read that 200 years ago, the old prescription for something retrospectively figured as cfs was to ‘walk on the mountain.’ I walked a few blocks every third day, then every second, then more blocks. Endorphins good. Too many, and I’d flare and hurt a lot, but eventually I became too fit and was able to walk a couple of miles a day without bother. Now I can run and also walk with hand weights, and it sure helps me sleep more effectively, and uninterrupted. So, for over eighteen years, I have to keep getting out there when the cfs tries to drag me down, but exercise ‘convinces’ my body that I can’t be that sick, and the over reaction settles down. Of course, I still have it, and live a not too stressful life, but I can work. I found I could get into shape, and once I’m in great shape not much can shake the stability of my relative well being. Of course, exercise makes muscles sore, and I calculate I get about 2.5 to 3 times more pain than I used to from exercising, from the beginning, when I was 30-something. I just have a bad attitude about fighting back. Decided if I’m going to hurt all over, I want my darn good reason for it, so I go through the pain again every time I get out of shape, at least once a year. But it’s worth it, and might work for some others. If I overdo it, I take it easy for a while. If it’s the first trot in a while, I won’t do it again for a week or ten days when I’m recovered. I assume there are people that exercise only makes worse, but it’s worth a try. A couple of blocks. One pound hand weights. I have the impression that swinging hand weights while walking pumps lymphatic fluid, and I ‘blow out’ the nodes like little carburetors, the swelling settles down before I finish the workout, starts settling when I break a sweat. I’m more fit than I ever would have been without cfs, but I ignore more than a little discomfort. Weight training, too, using my large muscles is required for me to sleep properly, light weights work fine. Break a sweat. You’ll be done for the day but feel better the next. I also find that exercise at altitude is of great help, and hope to afford an altitude simulator tent for home to test. Altitude conditioning seems to result in more oxygen to the brain and brightens me considerably. …That’s what I know. Watch dosage, medications can have changing effects over long timescales of weeks or months. Do you feel better when you miss a pill? Or right *before* you take it? It’s a clue. As for pain, I figured I was going to hurt all over from exercising or hurt all over from sitting there. The pain from exercising is far preferable, and you get through it over some days. Next time, less pain, and once conditioned, muscles feel like those of anyone else who works out. Start light! If you tweak things that connect to bone, that hurts too much. It’s not the weight or distance, it’s the sweat and the endorphins that count.
I just had the conversation with my PCP yesterday, after an ER visit for my bladder, kidney and pelvic pain. He said I’ve had all the tests, nothing else they can do for me. have a new Gyn, but haven’t been well enough to go see him to sit and wait in the waiting room.
I feel like I’m not being heard, no matter how loud I scream, noone hears me, except for my family. I was crying today, crying for just some help, my disability was canceled from UNUM because although to my face the Drs say how much pain I must be in, on paper, they can’t seem to come up with the same thing they tell me face to face. I’m running out of strength to fight it, my family is the only reason that I put up with this.
Sandy, I can very, very much relate with what you have written. Sadly, this describes the reality many of us live with. Keep persevering. And be reminded you ARE doing something of value to others by posting your blogs. In our CFS prisons, those we meet & read of online are often a needed source of support and encouragement.
Ed – are you sure you have CFS? Many of us, maybe most, would collapse of exhaustion for days upon even the basic walking exercise. But, hey, if it has worked for you, blessings to you.
Sandy Robinson says
Hi Deb – Thank you so much for your support. I appreciate it! I am glad that what I write others can relate to.
Fibromyalgia & Fatigue Center changed my life! There are centers all over, so there may be one close to you. I found the center after seeing a lecture in Seattle given by Dr. Jacob Teitelbaum. Listening to him speak was amazing, it was the first time in over a decade that I felt like someone understood what I was going through and validated all my feelings!
Dr. Teitelbaum has had Fibromyalgia/CFS so he understands exactly the struggles & daily burdens we deal with.
they treated me as a whole, did tons of lab tests, treated my nutritional deficiencies, started me on Thyroid medication for hypothyroid and addressed my adrenal insufficiency. I have NEVER felt better!
Hi. I can really relate to what you are feeling. Its just like being in prison and incredibly frustrating.
Here are some things that I have found helpfull. For anxiety, Mathematical…Sudoku and jigsaw puzzles help to distract my mind. Writing a daily gratitude journal lso helps to focus my mind on small positives that I’m thankful for. Another thing that lifts my spirits is looking at the beautiful creation around us and getting outside as often as possible. I really hope these small tips might bring you some comfort.