Ahhh fatigue! It’s the little dirty secret of stem cell transplant. It’s an ongoing battle that seems to pop up at any time. It’s the main reason I can’t live in the two-story house that I put so much work into to live out my life as a single woman. It makes everyday life more difficult.
Image by Alexandr Ivanov
I don’t suffer fatigue on an everyday basis. It seems to pop up at random on various days. One day I might feel like a million bucks and then the next day I feel like I’m a buck fifty. It’s an ongoing struggle that I have to deal with the possible day-to-day at this stage in recovery. Oh, I’m just a little over 300 days from transplant.
Difference between tired and fatigue
To me, tired is more of a sleepy issue. I’ve had a long day and just want to take a cat nap in my recliner for an hour to refresh and gain some energy.
Fatigue is a whole-body issue. My muscles just don’t have what it takes to move. They feel exhausted and I’m not sure about my feet. I worry I might not make it to the bathroom without falling or collapsing. They’re not getting the oxygen they need to keep me on my feet. It makes getting up out of a chair hard at times. Even rolling over in bed can be a challenge in the middle of the night. The muscles are just not there.
What causes the fatigue?
For the most part, my hemoglobin reflects how I feel. The lower the level the worse my fatigue is. As of three days ago, my level was 8.3 which is point three from needing a blood transfusion. I hate being that low. My legs are unsteady and make it difficult to stand or walk even a short distance like going to the restroom. Until my hemoglobin rebounds, I will feel this way.
When my hemoglobin is higher like high nines and tens I feel great. My legs are strong and I can walk or stand with less effort.
Medications can cause fatigue or even drop my hemoglobin. Just a little over a month ago I felt the best I have had in over a year. Out of the blue, I started having issues with GVHD. My doctor upped my Prednison which in long-term use wastes the already depleted muscles. It affects the large muscles of the legs and hips making even getting off the toilet a challenge at times.
Steriods like Prednison lessen one’s immunity which makes it hard for the body to fight off viruses and infections. Which is another cause of fatigue. Any virus can cause you to not feel the greatest and also lower the hemoglobin level. It’s a vicious cycle. It’s like I’m screwed either way.
How to cope with fatigue or lessen the impact?
- Limiting my activity seems to help a lot. Say, for instance, laundry. I currently have to take my clothes to the laundry mat which involves loading and unloading the laundrry. If today is laundry day I limit it to just that task like no extensive cleaning or shopping. Keep it simple.
- When do I feel my best? It seems the mornings are best at the moment. I do my daily tasks at that time leaving the rest of the day to relax or do small things when I can or need to.
- Take lots of breaks. When my numbers are low even sweeping, vacuuming, mopping, and cleaning the kitchen and bathroom becomes tiresome. When my numbers are low and I’m not feeling well I will sweep and mom then takes a break. Then move on to the next task and take another break. It takes longer to complete the tasks but at least I can manage the fatigue and not overdo it.
- Use equipment as needed. I have a roller which is a fancy walker. It gives me a place to sit no matter where I am. This helps to get me off my feet and rest in between longer distances when seating isn’t always available. When I have my roller with me I always have a place to sit a minute and rest. Canes and wheelchairs can also be very helpful on good days or bad.
- Don’t overdo it. It’s ok to take a day of rest you don’t have to be a rockstar every day. Know your body limits and what you can handle when your numbers are low. You’re not doing yourself any favors by depleting your muscles.
Coping with day-to-day fatigue can be very frustrating. These are the main ways I keep going and manage the effects of day-to-day activities depending on where my levels are at the moment.
How do you cope? If you have any other suggestions I would love to hear them.