I had a really bad CFS spell yesterday and most of today and once again, all of the things I wanted to get done I had to let go and push off until my next day off, which is Friday. One of my major issues I have is that when I am flaring, I will lie on the couch or in bed and think about all of the things that I was planning to do or that I should be doing. It’s a total mind game I have with myself that I know only makes the stress worse and my illness worse, but I haven’t been able to let go of that control yet.
My husband will always tell me, “Don’t worry. We can do it tomorrow.” Or he will say, “Don’t sweat the small stuff. Tomorrow’s another day.” But I feel like I have already lost so many tomorrows. I keep waiting to feel better tomorrow – but tomorrow never comes. I’m 41 years old, I will be 42 in less than 6 months. I feel like my life is slipping away from me and it has been overrun by ME/CFS & Fibromyalgia. I want to do so many things, but I feel like my life is spent waiting. I’m always waiting to do the things that I want to do and the things that make me happy, but CFS & Fibromyalgia always get in the way.
I keep trying to find ways to make a life for myself as normal as possible but with a young son at home, there just isn’t any energy left for me to do anything really for me. The only thing I honestly can say that I have done for myself on a regular basis was getting the massages and going to the gym and I had to give up my massages due to my husband losing his job. I try to get to the gym twice a week if physically possible but since Christmas, I’ve been lucky to get there once a week. I enjoy spending time with my son and his activities – don’t get me wrong. But with these illnesses and the constant flares, post-exertional malaise, and pain, tomorrow never seems to come for me.
I know that even for healthy people they often feel like their life is slipping away from them. But healthy people have control over their situations where I don’t. I was always a big goal setter and that is just part of who I am. Setting goals, working to achieve goals, and always trying to get to the next level kept me going in life. I mentally still have a lot of that mindset and when I lose days, like the past two days, I can’t help but feel like a failure.
The “critics” we have to deal with in our lives would read a post like this and say, “Well, just get up and make it happen!” or “JUST DO IT!” I know a lot of people like that who are supposed to be motivators, life coaches and “successful” business people tell us that we need to take charge of our lives, reclaim our health and we can choose to live to the fullest. It’s not as if we have a choice. Yes, there are some things that we have control over and yes, there are some people who will use their illnesses as a crutch for everything in their lives. But most of us aren’t like that.
I dream of actually being able to work full-time again some day. I would love to be able to go in, work a full day’s work, and come home and be tired from working all day. Not be the sick exhausted I get from the CFS. To healthy people, that sounds crazy, I know. I have people telling me all of the time that I am “stupid” for trying to work when they assume that “I don’t have to”. People think that if you get disability you must be raking in the money. Believe me, the majority of us on disability would rather be working full-time than having SSDI because we don’t get near what we made when working.
I would love to be able to plan for tomorrow and know that I can accomplish what it is that I want to accomplish. I fear what if tomorrow never comes? Then what? Will I be 80 years old, looking back on my life and all I remember are these days of sickness? I don’t want that for myself or for my family. I keep trying to do everything in my power to make a better life, but CFS & Fibromyalgia always seem to win – no matter what I try.
I refuse to give up, but sometimes I feel like I keep losing battle, after battle after battle.
Danease Gresch says
Sandy, I understand exactly how you feel. I’ve dealt with this for the past 15 years and feel that I’ve wasted so much time just trying to find answers and get well again. I miss my “old life” where I was so active and was able to accomplish so many things. I’ve suffered financially as well as emotionally and physically from becoming ill. I keep thinking there is a light at the end of the tunnel and I hit dead ends. I’ve had to cancel so many appointments with friends, trips to see loved ones and other friends and just dates with my husband due to feeling so bad. When you wake up so tired you don’t feel like breathing — now that is bad!!! I have some semi-good days though and I thank God for those. I try to figure out what I did that made me have a good day versus a bad one and really there is no rhyme or reason.
The good news is that I have finally found a good, local Doctor who is willing to work with me on both blood and saliva testing for a Thyroid and Adrenal connection to all this. When I found a website that listed the many symptoms of those with Thyroid and Adrenal Exhaustion, I found I fell mostly into the Adrenal area. I had been told by other Alternative Practitioners that Adrenal Fatigue was my main problem. Until now, I have not found anyone to really test or help me with this. I feel now I have a fighting chance to find an answer and start treating the problem. Maybe I will never be 100% but I will take 90% any day over what I’ve been experiencing.
For you Sandy, and any others on this site, please find a good doctor who also believes in complimentary medicine and who will work closely with you to find a root cause. There is a root cause for all illness and if we can find what that is and get a good protocol for healing, we can make progress. There is a doctor in D.C. who gives a wonderful list of symptoms for both Thyroid and Adrenal insufficiencies. You can get a general idea which side you are on or if you have both issues. Also find out if you have yeast overgrowth which can really wreck your body functions. Check all of your vitamin and mineral levels by blood tests. You may be low in Magnesium for one thing. The site I went on was http://www.drrind.com. I am not advertising for this doctor as I have never met or talked with him. I do feel he has a good way to detect if these issues are present and has a good protocol for healing. Good luck and God Bless to all on this site.
Beautifully written! You always have a wonderful way of explaining things. I guess for me, my “tomorrow” goals have changed significantly over the years. I took medical retirement from classroom teaching when I was 41. I had to change my goals, get more education, and learn new ways of doing what I love to do — teach. It wasn’t an overnight process but I got there eventually (I’m 56 now). I don’t think in terms of “tomorrow” anymore. Seriously, not ever. It’s today only. I have normal everyday plans for errands and regular stuff — nothing that matters much if I have to change plans.
Oh Sandy I completely understand how you are feeling. I am always saying “maybe tomorrow, maybe tomorrow” but my boyfriend says “you always say tomorrow, when is tomorrow actually going to happen?”. *sigh*
Sandy Robinson says
Danease, Sherlock and Kitty – Thanks for understanding because I know you live it everyday like I do.
Danease – I agree with you that there are medical causes underlying all of these issues that we have that most doctors are missing. Now that my thyroid is under control I have seen a world of difference in some of my symptoms. I think the problem is that there are so many underlying issues with CFS that it is hard to address them all, don’t you agree?
When I was going to the Fibro & Fatigue Centers, while they were excellent there, the expense was astronomical because it took so many medicaitons to treat all of the underlying issues surrounding CFS & FM.
I am so happy that you have found a doctor who listens to you and thanks for the link. Hopefully others will check it out and find help as well.
Danease Gresch says
Sandy, I think you are spot on as far as all of the underlying issues with CFS and FMS. When I started getting mild symptoms years ago, it was all muscle related and I treated it with OTC meds. As stress related events started to occur in my life, the FMS got worse and I started getting CFS symptoms as well. That’s when I knew I needed help. One of my first Doctors had gone into Alternative Medicine after she suffered from Celiac Disease that her own peers couldn’t help her with. She did her own research and started her own practice for those with chronic illnesses. She suffered herself and therefore knew what her clients were going through. She was the first to tell me she thought I had Adrenal Exhaustion. I didn’t have any specific test until about 6 years ago when I had a saliva test run which showed all hormones at a very low level including DHEAS and Cortisol. My Cortisol was flat line all day. Not until now have I found a Doctor locally who will update this test and will treat it if it shows to still be low. The great thing is he accepts insurance.
This is what is so hard for those of us trying to get help. If you do not have insurance or your practitioner won’t accept insurance, it all comes out of your pocket and becomes so expensive you can’t afford to go back. Laws need to be changed as far as this goes. So many need help and can’t afford it. I hope all of you are lucky enough to find good Doctors who will listen to you out there and that you will get some relief.
Danease Gresch says
One more thing Sandy is what I found out from this Dr. Rind’s website. If you have an Adrenal issue and you just treat the Thyroid, you will feel good at first and then you will relapse into the fatigue again and hit rock bottom. The reason for this is if the Adrenals are exhausted and the Thyroid is given a boost with meds, sometimes the poor Adrenals can’t handle the energy boost coming from the Thyroid meds. You’ll get a temporary feeling of wellness and then crash. He suggests getting the tests for the Adrenals first and if they are found to be functioning poorly, treat them first to get them back to normal function and then you can treat the Thyroid if it is still a problem. Makes a lot of sense to me. If you haven’t had your Adrenal function checked, I would suggest doing it to make sure you aren’t missing something. There is a hormone sight linked to ZRT Labs which is a licensed certified lab who will run saliva tests to evaluate your Adrenals. You can do it yourself without a Doctor. Go to http://www.hormoneprofile.com and they will send you the test kit. Just a thought.
Sandy Robinson says
Thanks, Danease. I will look into ordering the test kit. I definitely do not want to crash!
wish you good luck and good life ^^