Fatigue is the most common symptom of Multiple Sclerosis. It is said to affect about eighty percent of people who have ms.
MS fatigue isn’t being “tired”. You know when you have the flu along with a 102°F fever and your whole body hurts and you can’t keep your eyes open? You HAVE to go to bed. That’s ms fatigue only it’s every day. That’s the best way I can describe it. It’s brutal. Every day I experience fatigue particularly in the late afternoon. Mornings are “prime time” for me. I do everything I have to or want to do in the morning. Comes 3:00 p.m. moving is hard. 4:00 p.m. it’s even harder, accompanied by stiffness and heaviness and after 6:00p.m. it’s almost impossible to do much at all.
Take a nap they say. A nap? I couldn’t nap when I was healthy and I can’t nap now.
I work out in the morning and by afternoon unable to lift my arms. It has nothing to do with working out. This is a result of a damaged central nervous system. There is no exact scientific explanation for the fatigue that is a major symptom of ms, which was my first symptom along with pain. Theory has it that it’s takes a lot more energy to do normal things because the nerves in our brain and spinal cord are damaged/demylenated and every move we make has to go around the damage. (For lack of a better term). I don’t know. I do know that heat and humidity worsen fatigue sometimes making it almost unbearable to function.
I have missed out on so many things over the years because I was “tired”. Prior to being diagnosed with ms, I didn’t know why I was so tired. I just knew I couldn’t go. I could never go. I missed out on career opportunities and relationships because “I was too tired” to go. I remember being embarrassed because I was so tired and making up excuses why I couldn’t go. People aren’t mind readers, perhaps thinking I was blowing them off.
Fatigue is very hard to explain. I distinctly remember explaining it for the first time to a Doctor years ago. I said, I get tired making my bed. These days I make my bed but I don’t do my hair anymore. It takes too much energy, and I have thick/coarse hair that takes thirty minutes to be professionally blown out. I don’t wear makeup much anymore, it takes too much energy. I remember when I wouldn’t go out of the house without makeup and hair done. How priorities change.
Fatigue is hard to manage. Some simple ways I try to manage it are:
Firstly, treating any depression. Depression can worsen fatigue and lets face it, ms is depressing.
Putting things that I use regularly on bottom shelves so it’s easier to reach and takes less energy. Simply raising your arms is difficult sometimes especially when fatigued.
Just talking takes so much energy. I don’t talk to anyone when I’m really fatigued. My brain needs quiet time.
I’ve started putting the dog’s food in sealed labeled bags for the next day (different/Rx foods different dogs), making it easier at night time when fatigue hits.
When I’m having a good day I’ll cook things that on other days might be too much work and freeze it.
Recently I started making and drinking protein shakes and having fun adding different ingredients, fruits and vegetables. I really believe they are helping me with energy along with a balanced diet.
No skipping meals like I used to.
I go to bed early when possible. My bedroom is just for sleeping.
Staying cool when it’s hot. Air conditioning! I avoid the afternoon sun and heat, opting to go out in the morning or at night. At least last year….night.
I used to do all of the laundry and cleaning in one day, blasting the music. Now, I do one mundane load a day. Sometimes it sits overnight. That’s okay too. I give myself permission not to be perfect.
Managing stress is very important, and probably the most difficult.
There are medications for fatigue. Adderall is one (ritalin another) that is prescribed off label to ms patients for debilitating fatigue. In my Doctor’s words, “speed”. Having a history of depression, I guess speed and me wouldn’t jive. Damn! Instead I drink a lot of Doctor recommended coffee.
And while I do regularly conserve energy, on those good days I do tend to overdo it because I’m so happy I can do it. Those days are celebratory! I always pay for it later that night though. Burning feet and stiff painful limbs letting me know overdid it into the next day.
Ration energy on a good day? Hell no! I’m going to use every bit of it up when I have it and worry about tomorrow tomorrow.