Nothing about fibromyalgia and chronic fatigue syndrome is easy, and that even includes getting better. While being in recovery is a heck of a lot better than dealing with the full-blown, lay-in-bed-and-suffer stage, it comes with its own challenges.
For the past 2.5 years, I've been able to make slow, steady progress. I'd spent a year varying from marginally functional to bedridden, then finally accepted that going full speed ahead and refusing to give in to illness was not going to make me better. I left my highly stressful full-time+ job so that I could actually be a mother to my children, who at the time were 1.5 and 4 years old. Since then, I've had set backs and surges forward, but I've kept trying new things and -- overall -- I've improved quite a lot.
What's been difficult for me is finding my new limits. I still vary a lot in what I can handle in a day, so pacing has remained important. Now, though, I find that different things are stopping me. It used to be that the moment I'd done too much, I'd basically collapse into a ball of unremitting pain for 2 or 3 days. Later, I'd start getting a nagging pain and, if I didn't stop, it would ramp up until it knocked me out of commission for anywhere from a few hours to a couple of days. Now, it's not the fibro that stops me -- it's either my asthma or my really weak muscles.
Some researchers believe that our bodies don't transport oxygen properly, and possibly don't use it efficiently either. I've become a believer in that theory, because I know once I start breathing hard the strength is going to run out of me like water. My muscles simply cannot keep functioning. They usually don't even hurt from over use the next day, so I know I'm not working them to capacity, but they just stop working. I really want to get in better shape and lose some weight, but unfortunately fitness is still an up hill battle for me. (But yes, I'm trying to be happy that I've at least approached the hill!)
Something I'm grateful to have gained back is the ability to plan ahead and have a social life. However, I'm struggling right now to find a balance. For example, my husband and I had a Halloween party for about 25 people. It meant cleaning and decorating the house, shopping and cooking, getting costumes together, etc. Because my husband is awesome and did a lot of work, and some great friends helped us prepare as well, it was a successful party and I was able to enjoy every minute of it. And then I slept for most of the next 3 days. Worth it? You bet! Hard to be a mom and keep a household going when all you can do is sleep? Well, you already know what that's like, or you wouldn't be here.
I've got enough commitments now that I sometimes get really scared about whether I can handle it. Now and then I feel panicky or get really insecure, certain that any day my run of good fortune will end, I'll drop all the balls I have in the air, and I'll end up right where I was a few years ago. I've learned that in some ways, things were a lot simpler when I was really, really bad: no one expected anything of me, I expected very little of myself, I had no plans, no commitments (other than to my kids), and nothing to keep track of. Now, things are getting complicated again, and I have to re-learn how to plan, live up to expectations, make commitments, and keep track of things. I'm certainly not complaining -- I know the grass is a whole lot greener where I am now -- but that doesn't mean it's easy.
To help me in my current struggles, I'm trying a few things:
- I'm finally getting to the exercise DVDs I've been sent to review. By scheduling exercise into my work day, I know I'll make time for it. I'm hoping that it'll become a habit and also that I'll be able to build up my stamina so that I can actually begin to rebuild my strength.
- I have lists, schedules, reminder alarms on my phone, you name it to make sure I remember what I have going on. I budget in time for anything that needs preparation, and I try to make sure each day contains only a manageable amount.
- I'm sure to let the people who depend on me know that I am still living with chronic illness (several illnesses, in fact), so they need to cut me some slack now and then.
Are you facing challenges connected to getting better? How are you re-arranging your life as you can handle more? What has helped? What's been a problem? Leave your comments below!
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How wonderful to be in a place where at least SOMETHING can be done! But I know what you mean. I’m just coming out of a severe relapse after I tried to clean my parents house during Thanksgiving, and the state of mind was kind of blissful. I was too sick to do anything but sleep and when you get to that point it is kind of nice because there is no decision to be made about what you should be doing. When I get a little better I get nervous because I”m not sure what I should be doing.
I think once you start worrying if you’re doing too much that is a good time to take a day off and meditate or relax as much as you can. You need as much quiet time as possible to take stalk in what you’re capable of.
Today, I’m going to tackle a shower, and then see what happens. =)
I do intend to write on my remission (an subsequent relapse) in the near future myself, but some points:
- cardiovascular training: always use a heartbeat monitor (polar) and carefully keep track of what your body can handle (max heartbeat, av. heartbeat, distance, time)
- outdoor training: make sure you have the wind in your back on the return trip (some hard earned lessons here)
- once you are recovering, don’t take anything for granted, keep on exercising, use it or loose it
- feel an upcoming infection (cold, throat), immediately slow down
- gradually try to increase your pace, never increase two things at once.
I have been in denial of having this now for years, let me tell you years. Honestly. I know that it sounds silly — but my doctors told me some time ago that I have fibromyalgia. I knew someone who had it prior to being diagnosed, and honestly I thougt it was a ‘made-up’ disease **all in her head** sorry you all, but honestly, I thought that!
I’d been getting sick on and off for years, sick I mean so run down, can’t move much, sore — sometimes severly swollen lymph nodes, sometimes loose weight, a cycle, unpredictable, or so I thought for a LONG part of my life, like 10yrs or more **I’m 32**.
I desperately want to be BETTER or GOOD this see s like something if done CONSISTANTLY can help pinpoint the cause and effect some, and reading these posts helps me to be okay a little bit more with this and realize that I have been in denial. Somedays a shower is all I can manage. And if it’s called Fibromyalgia and there is no “proof” **I think that’s the biggest thing to me– is it real because there’s no “proof”? Also, have to be honest, I do worry, I’m a worr-IER! I would perfer to say I get concerned, but my husband says worry.
Adrienne, I admire you, gal. I think I’ve told you that before. Like you I run a blog (and podcast) about Fibromyalgia and Chronic Fatigue Syndrome. Like you, my health has improved. And like you, one more time, my life is challenged. I am no longer young or vibrant, yet I take on work as if I were 20. I no longer have a body that always cooperates with me, but I continue to expect a lot out of it. I think we have to. I urge you to keep going with your challenges and let us know how you’re doing. Just know that- to some extent- we’re all struggling right there right along with you!
) Cinda Crawford
I don’t believe CFS or FMS is STD related. I haven’t been sexually active for over six years and came down with CFS two years ago after a couple bouts of infections.
You are great
hi i thought i was the only one! i have cfs ,fibro, i’m bi-polar ,i have had this my whole life! had a bad episode 12 yrs. ago took 3 yrs to get back in public! well its back! after finding my oldest brother dead last dec. since then i lost my job, my car, i’m loosing my home of 31yrs. i lost my health ins. and liberty mutual a ins. through my job in wich my dr. has disabled me from will not pay! they say they dont belive its real! that we should have cured me by now! i’m so tired of being called lazy, crazy, and just the pain im in oh my! i take so many meds, the skin rashes, burning ears, eye pain! i also have catteracts and glucoma. lifes really hard rite now! i forget maybe i’ll get better?
One of the biggest things that has helped me so much in the management of fibromyalgia is massage therapy. I have to be very careful in finding a massage therapist who actually listens to my needs and comprehends when I say one day I can take pressure and the next I have to tell them I can barely handle the pressure of their hand on my skin, but once you have that, it is a wonderful investment in your health and well being, especially being able to take an hour out of your week and knowing that break is actually helping you to get better.
When I was diagnosed with fibromyalgia, I was working on a freight processing team and lifting and moving heavy boxes all day long. If I worked for more than a couple of days in a row, I ended up having to call off of work. It was after I was fired from my job for too many absences after they refused to listen to my requests to keep me working when they scheduled me that I discovered massage therapy.
I have since become a licensed massage therapist in the state of Ohio and have studied fibromyalgia so I can bring relief to the people who suffer as much as I do and sometimes more. Massage has so greatly improved the quality of my life and my mental outlook that I can’t imagine going without it anymore. The only time I feel human is when I can get weekly massage treatments to keep me as pain free as possible.
I’ll stop rambling, but I wanted to share with anyone who is at their wits end trying to find pain relief that lasts for more than a few hours. While it takes time to keep the benefits of massage, once you’re in the sweet spot, it helps take at least 50% of my pain.
Too tired to go into depth, but I wanted to say thank you for writing about Fibro!
Who knew that being sick was SO MUCH WORK!?!?
I’m always planning, assessing my energy level, setting *SMALL* goals, learning about treatments and self-care and looking for mutual support systems for my health issues.
I am still working full-time and I’ve given up my social life in exchange. I’ve also not been able to make healthy meals but that’s an ongoing project of mine. I’m going to get “Personal Trainer: Cooking” for the Nintendo DS to go along with my Brain games and see if I can’t slowly incorporate new behaviors into my routine.
Using more than 3 ingredients for me is a real success. I would looooove to see some more articles on cooking with fibro. Even just “how not to burn the house down with fibrofog” guidance. Oooh, don’t think I’m joking.