Chronic Fatigue Syndrome

I wrote about my battle with Chronic Fatigue Syndrome in HIAV and occasionally I will receive letters from readers who are struggling with CFS and want to know how I overcame my illness. I recently received a letter from a reader and thought some of you might find what I wrote helpful.

I know you had Chronic Fatigue Syndrome a while ago. I’ve had it for almost a year now, and I’m still struggling quite a bit. I’m still working (I’m a social worker, a job I really like, but which can be stressful), but I need to take time off frequently. My health has gone up and down a lot in the year. Sometimes I have some energy (for brief periods) and feel more “normal” again. Other times I’m completely laid out with exhaustion, headaches, dizziness, spaciness, etc, and can hardly function. I live alone and take care of myself the best I can, try to eat well, take lots of supplements, rest, etc.
I have a doctor who is pretty understanding about CFS and I’ve gotten into a special CFS clinic with a doctor and naturopath. I had 22 vials of blood taken yesterday!!, for them to test for many different things, still ruling other stuff out.

I guess I just wanted to see how you’re doing now. How long did you have CFS? Are you “better” now? Do you still have some CFS symptoms or have you fully recovered? Was there anything that you found really helped you or made the recovery quicker? etc.

Hey J,
I feel your pain. I know that roller-coaster of energy way too well … It’s frustrating as hell and I used to get SO MAD at my body for betraying me. 🙁 When I hit my physical bottom – It took me a couple/three years to recuperate to where I could work again… I was really far gone. I weight 83 pounds and was bed-ridden and thought I’d never be well again. I even thought I might die.

My biggest piece of advice is to be an advocate for your health.
It sounds like you’re trying your best to take care of yourself and that’s awesome. It’s important to remember that you are the only one who knows how your body feels so if your doctor is suggesting something that feels wrong or that isn’t working for you … it’s important to speak up and let them know. I used to go to my docs with a long list of questions and wouldn’t leave until I had a satisfying answer for each one. 🙂

That also means not relying on western medicine to fix you. Explore as many options as you can … cures for illnesses are like shoes. Not everyone can wear the same pair of shoes. Find what fits and works for you.

My second piece of advice … is go to therapy.
Talking to a therapist about your frustration about your body will help you SO MUCH. And talking to a friend or family member doesn’t count. Go see a real therapist who can give you some tools for coping. I believe that my CFS was not just physical but also had to do with some trauma I had experienced in my past. Healing and working on that trauma lifted some of my exhaustion that was rooted in my body. Writing in a journal also helps.

Third… Take some time to heal.
I went on Emergency Welfare for a while … the $$ was barely enough to live on but what it did do is give me time to concentrate on myself and work on getting healthy. 

Hopefully through your work you’ll be able to take a leave of absence via your insurance.

Four… Get dressed EVERY DAY no matter what.

Getting dressed every day is important. It makes you feel like you have a purpose. Even if you get dressed and then go lay on the couch… at least you’re dressed. *laugh* You know what I mean?

Five … don’t stop moving.
I know how hard it is sometimes to get the energy just to get up to go pee … but do a little something physical every day. Walk to the corner and back. Walk up and down a set of stairs. I would try and do yoga every day on my bed and then I would collapse and sleep for 3 hours. *laugh* But that 20-30 min of yoga kept me limber and the blood flowing. It’s important.

On days when I wasn’t able to get out of bed (but wasn’t sleeping) I used my time to meditate so I would feel like I was accomplishing something and not wasting my time laying around. I would think of myself as a re-chargeable battery and I would focus on there being a tiny green light inside me that would grow bigger and bigger until I was fully charged. It sounds silly but it made me feel powerful and in charge of re-charging my life. Your brain is a powerful healer. 🙂

Six … ask for help.
I was lucky to live with wonderful roommates and they were able to help me with food/errands/etc. My family was supportive as well but I was very prideful and didn’t express to them how sick I was and how much help I needed. Looking back I wish I had shared more with them and asked for more help. It may have made my road to recovery a little easier.

Work on putting a good support system in place with friends/family. You need to focus on getting healthy and that requires some help. So whether it’s from your Mum or your best friend … ask for help.

Seven … if someone says “Just take a nap you’ll feel better …”
Look them dead in the eye and say “Would you say that to someone who has cancer?” While your friends and family may not fully understand your illness don’t ever feel like a burden. YOU HAVE AN ILLNESS and if you had cancer, MS, or some other debilitating disease they would probably be bending over backwards to help you. So ask them for help. Tell them that while they may not understand your illness that doesn’t mean that you don’t desperately need their help and support.

If they continue to “poke fun at you” tell them that you appreciate their help but would like it if they kept their opinions to themselves.

Eight… food.
Food is the fuel that keeps your body alive.
So fill it with whole healthy foods and if you’re struggling to have the energy to make your own food have one of your support team cook for you OR have meals delivered. There are lots of programs out there for people who can’t make their own food due to illness.

Lastly. Avoid stress whenever possible.
This may mean you need to leave your job (as social work is extremely stressful). This may mean removing friends/family who drag you down instead of lift you up. BE AN ADVOCATE FOR YOURSELF!! 🙂 When you’re debilitated by disease it’s really difficult to speak up for what you need but always remember that you deserve to be treated with love and compassion … and it starts with you treating yourself with love and compassion.

I hope some of these tips helped and I wish you a speedy recovery.
Much love.
SARAH

Info:
CFS Canada

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