I’ve been having trouble waking up lately, feeling not at all refreshed by my 8.5 hours of sleep.
And yesterday, I was only able to manage one flipping blog post.
After that, I couldn’t bring myself to care that not working meant not getting paid.
It’s not typically like this.
Usually, I work feverishly from 8 a.m. on, at a pace that suggests I’m on a race against time. And I am. Because I know that — at any moment — I can hit The Wall.
I was diagnosed with CFS (chronic fatigue syndrome) several years ago, after numerous blood tests for anemia, vitamin deficiencies, thyroid conditions, etc. After delivering his diagnosis, my doctor told me he couldn’t help me, and advised me to see a homeopathist. The remedy my homeopathist prescribed didn’t seem to change a thing and, since then, I’ve treated my CFS in much the same way I treat my depression and anxiety: as something to be managed rather than cured.
Christina Gleason has a fabulous post on her experiences with CFS, in which she eloquently describes the very same frustrations I’ve felt over others’ quick dismissal of my symptoms as signs of laziness and hypochondria.
For those freelancers struggling with CFS, my suggestions for getting through the workday are quite similar to those I’ve already mentioned for working through the weekend:
- Make sure you’re getting an adequate amount of sleep every night. Some people need more than the requisite 8 hours, and this is nothing to be ashamed of.
- Plan out your day, down to the minute, with projects broken down into more easily manageable tasks. Projects as a whole can seem insurmountable; when you take things one step at a time, they become far easier to accomplish.
- Take breaks to avoid burning out.
- A quick, midday nap can be helpful, but sleeping the day away due to unavoidable exhaustion will only serve to make you groggy and unable to function.
- Get out more! A quick breath of fresh air — plus some much-needed sunlight — can revive you.
- Remember: As freelancers, we have to wear multiple hats in order to keep our home businesses afloat. If you’ve been successful despite your CFS, you should be proud of yourself. Don’t let the large number of people who don’t understand your condition tell you otherwise.
Ugh… that must be brutal to be a freelancer with CFS! I know another freelance writer whose doctors told her she probably had CFS (from what I understand, diagnosis can be tricky), but it turned out that she actually has myasthenia gravis. Now she’s awaiting major surgery in several weeks. Here’s her blog: http://bethmorrissey.wordpress.com/ I hope that your symptoms do not develop into something more serious! 🙁
Steph:
This post has really hit home, as most of my life I’ve been diagnosed with one sleeping illness after another with consistently active EBV(mono three times, etc)…I was finally diagnosed with CFS last year after doctors ruled everything else out, and while I’ve lately had more energy than I’ve had in awhile (possibly even years), I understand how difficult it can be you have a bout of exhaustion, when your body just crashes.
I don’t really think people understand just how much it can affect a person; I think so many people think “just take a nap, drink some coffee.” You’re absolutely right that they equate it with laziness, and this misunderstanding causes so much frustration and maybe even makes you feel worse. What people don’t understand is that it’s not an unwillingness, you just simply can’t. You can’t function, you can’t think clearly, and simple tasks like loading a dishwasher or walking a dog — sometimes even getting dressed in the morning — is overwhelming and exhausting to a degree that many can’t comprehend.
I think that your tips are right on — it’s about managing, balancing, and taking care of yourself. Look out for warning signs and (which consequently is how I manage my own anxiety) and take care of yourself. When it comes down to it, you know your body, yourself, better than anyone.
Thanks so much for these words of encouragement and steps to take — I hope to apply them to my own life and situation. And I so very much appreciate you sharing your story. Wishing you the very best of luck!
@Susan/Urban Muse Writer: aaaahahaha I love that her blog is called Shenanigans. I love the word “shenanigans.” Anyways, I suppose it’s good thing that I go stir-crazy most of the time if I’m not being productive. It helps me to overcome the CFS, and accomplish a lot.
@Susan P: I’m so thrilled to hear from another person who knows exactly what I’m talking about! Last week, my mom called and, as per usual (because I sounded tired), she asked what was wrong. “I’ve just been busy working all day,” I said. Her response? “Yeah, so have we all.” Argh!
Are you seeing a doctor at all? Not sure where you are located but you might see if you can find a new doctor. There are a lot of great new treatments for CFS have you ever had an MRI on your neck? I guess you have seen this web site – cfs
This is a great site for both fibromyalgia and cfs – . fibro and fatique
I know what you mean about the wall, I hit it quite a bit. The worst part is waking up and realizing the wall has hit me.
I was first dx with CFS in ’87, sick for 3 years, then just mild relapses UNTIL late summer of 2006 and it hit me like a hurricanem struggled to work until May 2007, haven’t been able to work since then. I agree with what all of you have written, especially about the part that we “can’t”, it’s not that we don’t want to but simply cannot stand up or stay up another minute. At my last doctor’s visit, started home (about 30 miles) got so tired I knew I couldn’t make the drive, too scared to pull off road and rest, so went to the Highway Patrol Station and slept in their parking lot for an hour before I could drive home.
I take b-12 shots daily, that is the only thing I can say I think helps, also take antidepressants and Ambien to sleep, but still no good rest and often have bad dreams.
Thanks for the resources Jan! When I was diagnosed, my doctors weren’t much help, so I didn’t realize that there was any tangible way I could get treatment! I figured it was something I could only manage, like any other chronic ailment. I’m still surprised every time I learn that a symptom I’ve been experiencing is connected to the CFS. Looks like I need to dive into CFS research again.
Eileen – I’m interested in hearing more about your experiences with the b-12 shots. How (and how much) do you think they help?
When I got sick in 1987, I gave myself B-12 shots, when I got sick this time and saw a specialist in Memphis, on my first vist he gave me B-12 by IV, at first I was taking them 3 x weeks, but now take them daily (1ML). Late last year I started seeing a different doctor, he asked if I thought the shots helped and I said yes, but that it could just be psychological. He said no, he had just returned from a conference on CFS and enough patients are reporting improvement they believe B-12 actually helps. Occasionally I’ll forget to take my shot for several days and it seems I start feeling even more sluggish. Also at the same conference he said they have recently discovered CFS pts blood pressure flucuates. I don’t know why I’d never considered that when I get the feeling that someone has pulled a plug and all my life is just draining out of me, but since he told me that, I check it when I get that feeling and sure enough my BP is low, some days 91/49 etc. One thing I have learned…when I get that feeling I sit down or get in bed immediately as I have come close to passing out a few times. I attended a support group for a while and was absolutley amazed at the symptoms we all share. If you have not done so, I highly recommend you read “Chronic Fatigue Syndrome,Fibromyalgia and Other Invisible Illnesses” by Katrina Berne, a psychologist living with CFS. It is by far, the best book I’ve found on CFS.
Though they’ve tried many, many drugs, etc the B-12 and COQ10 are the only two I take just for CFS.
Just wanted to say that I appreciated reading the posts and comments. I have CFS, a freelance career, and two small children… and can relate to it all. I’m newly diagnosed (after lots of tests and relapses) and just trying to find someone out there who was able to get back to some degree of normalcy who isn’t selling something. Speaking of.. Jan, have you been to the Fibro and Fatigue Center? I’m going to one of the free seminars. I’m suspicious of the huge costs and their unwillingness to take insurance despite having medical doctors on staff. Eileen, I’ll look for that book!
I admire all of you that have a family and the responsibility, I simply do not know what I would do if I had to take care of anyone other than ME. Of course I admit when I was first hit in 1987 it wasn’t as devasting as it is now at age 61.
I also checked into the Fibro & Fatigue Center, and for the same reasons saw red flags…they’ve even called me a few times, though I’ve told them I simply could not afford to attend, which is the truth, have not worked in over 2 years,no income, no insurance and still battling with Social Security. I really like and use CFIDS Association, they have late news etc, patient stories, my doctor also likes it.
Have a good day to all.
Yes, I’ve been pouring over the data at the CFIDS Association. It’s great!!
The Mayo Clinic’s pages about CFS mention using D-Ribose to combat the energy deficit. It’s a natural sugar — the one nature uses to power life (D-Ribose, as in deoxyribonucleic acid: DNA). The theory is that CFS’ers don’t make enough on their own. It’s metabolized differently than sucrose so there’s no weight gain and diabetics can use it. I got decent results with two teaspoonfuls in water twice a day; three times a day would have been better but the stuff is a bit pricey. Get it online, not at your local drugstore or you’ll pay double.
Byron, what site did you go to order it, there are so many out there and does it come in diferent strengths, if so what are you taking. A friend of mine had mentioned this some time ago.
For of you that may be struggling, I FINALLY rec’d approval for my disability this week, it has taken two years, reports from lots of doctors and staying in constant contact with my US Senators and House of Representative. My attorney was Binder & Binder that you see advertised on FOX News.
Eileen, I’m glad you finally got your disability approval. That’s a little like getting a bank loan: first you have to be tenacious enough to prove you don’t need it. How miserable.
I got my D-Ribose from All Star Health through Amazon.com. Just go to Amazon and search for D-Ribose to see what the best price is. I’ve had only good dealings with All Star Health and I tend to use them for all my alternative health needs. I got the 8-ounce bottle of powder and mixed it in water; that’s less expensive (although not as portable) as buying capsules. At two teaspoons twice a day, the bottle lasted 25 days.
I’m so happy to see all these cfs resources flying around. Thanks everyone for sharing. It’s tough to know what to do when your doctors tell you they can’t help, and I’m grateful for all of the comments that have been left on this post. I’ve been learning a lot!
To Steph, in all these years this is the best site I’ve found to talk….so glad I found you. To Bryan, I have already ordered the D-Ribose, so anxious to try it. My former doctor, that had the patience to not give up on me in 1987 and finally found someone that knew about CFS, is retired and we live in different cities. He still keeps up with CFS and stays in touch with me, in my Christmas card he suggested D-Ribose, but my financial situation was so desperate I couldn’t afford to try it then, then when I read your post, it really got me excited.
Yes, Steph, this is truly a great place……thanks to all who take part.
Hi, Eileen.
I’ll be interested to know how the D-Ribose works for you. I don’t recall that it took long at all for me to notice the effects. I haven’t used it for several months; that money thing you mentioned is often a problem.
Bryon…I’m hoping the combination of the D-Ribose and getting my disability started will help. I mowed my yard Monday, spent Tuesday in bed taking pain med every 6 hours, hurting from head to toe. Have been in bed most of today, should be feeling better by tomorrow.
To all, My 18 year old daughter was diagnosed with CFS at 16. She is managing with the help of a great and supportive doctor. Her doctor has found that many of his CFS patients are sensitive to milk protein. When my daughter stopped eating ALL milk products, her aches and pains stopped too. She still has the fatigue, nausea and other associated problems, but the “my body hurts so bad I cant sleep” has stopped.