Working full time again has been more of a struggle than anticipated. Pushing my body to work harder, and to keep working after it has reached its limit, has meant the return of several symptoms. Most notably, the extreme fatigue.
Let's talk about MS fatigue for a moment. To quote Judi Bachrach, fellow MS patient and author who perfectly illustrates this topic: "Fatigue is by far the most common and misunderstood of all MS symptoms. "Fatigue" is a common word denoting a common experience shared by everyone; however the word doesn't truly describe this totally overwhelming and paralyzing symptom of MS. "Multi-system failure" more accurately captures what happens when all physical, emotional and cognitive functioning shuts down with the total depletion of any energy available. You could drop things, fall down, stumble or be dizzy, be unable to think or remember or even be able to talk clearly, or shed tears of unexplained frustration or anger. With all this, you would have an urgent need to lie down because there is nothing else you can do. That is multi-system failure, usually referred to as MS fatigue."
MS fatigue is a symptom I experience on an almost daily basis. Spending entire days on my feet dealing with the often grumpy and demanding consumer public, makes this a particularly difficult symptom to cope with.
In addition to the fatigue, I've seen a return of the muscle weakness in my hands, arms and legs making tasks like washing my hair, brushing my teeth and driving my car arduous and sometimes daunting chores. A busy day at the office doesn't always afford the opportunity to sit down, and I often find my legs burning, aching and becoming shaky as a run back and forth through the office assisting patients. Certain repairs on eyewear have also become painful to perform, though I do them anyway either because I'm alone or because I can't stand the embarrassment of having to ask for help to perform one of the most basic functions of my job.
Five months of this has taken quite a toll, but with no end in sight I am constantly brainstorming on ways to simplify and adjust. So far, I haven't figured out much. Between work and running a household (meal prep, laundry, keeping the house tidy and stocked, etc.) I seldom have the energy for anything else.
As a result, I've had to make some choices and give up some things I rather wouldn't have. I haven't done yoga or been to the gym since July and I've had to give up belly dancing, which breaks my heart beyond words. I don't pick up my camera nearly as much as I used to and I haven't touched an embroidery needle in months. And writing....I really miss writing and my blogs. As for my social life....if found, please return.
It's been difficult to set these things aside. They are all things that I love and are part of who I am. I miss the luxury and the freedom to be myself...to go to the gym when I want or go to belly dance class or practice at home. I miss having the mental energy and cognitive functioning to write and blog. I miss taking photos. I miss stitching. I miss my friends. I miss going out with my husband. I miss me.
On top of everything, we are smack dab in the middle of the holidays. I love this time of year, but I am feeling deprived of enjoying it. The holidays come with more to do which, while they are all things I typically enjoy doing (gift shopping, Christmas cards, decorating, baking, going to parties), I'm far too exhausted to even think about any of it. Christmas is in two weeks and I haven't had it in me to even put up our tree. And Christmas cards....I love doing my Christmas cards! But I'm afraid it just may not happen this year, which makes me feel like the worst friend/daughter/great-niece/cousin/sister on the planet. Writing out a Christmas card may not sound like the most daunting task, but it is with MS fatigue. I worry that others might not realize that and take my lack of reaching out this holiday personally. But I suppose there's nothing I can do about those folks. I can only do what I can do.
In an attempt for some reprieve, I applied for an intermittent FMLA leave at work. This would grant me the opportunity to reduce my working hours as needed while still protecting my full-time employee status and thus allowing me to maintain our health insurance coverage.
Yesterday, this little gem arrived in the mail:
(click image to enlarge)Balls.
Well, there goes that. Needless to say, I was pretty upset by the notice that I do not qualify for FMLA at this time. Though surprisingly, my distress was short-lived. I'm extremely disappointed as I sincerely need some time to rest, recoup and take a little better care of myself, both physically and mentally. But I think I am at a point where I am just too exhausted to be upset; I don't have the energy to spare. And there isn't a damn thing I can do about it anyway. So while I wish circumstances could be different, all I can do at this point is continue to plug along, hope for the best and remember to acknowledge and count my blessings.
The fact is, despite my struggles and challenges, I have much to be grateful for. So much. I also believe that these challenges have been put before me for a reason and I hope to learn what I am meant to learn from them. And while it has been much less than ideal, I have so far been able to do what I have to do. I am grateful for the fact that this disease has not yet taken my ability to work away from me and is still granting me the ability to be a participant in life.
In the meantime, I will continue to do what I can and do my best, and pray for patience and understanding from those around me. I am confident I will devise a way to make participating in the things I love, in life, a little easier.
