Sometimes you just need to vent, this is one of those times.
It is so hard to understand how someone that lives with you day in and day out does not accept, remember or understand that you are suffering from a chronic health condition. I can’t speak for you, but it feels as if this is what I experience on a regular basis. I don’t get it. I don’t understand why there is no empathy, no desire to help or even notice when I am having a bad day because of fibromyalgia. It feels so… wrong.
I certainly do not want to be waited on hand and foot every day, nor do I ever expect that, but when the bad days come around, as this day after Christmas turned out to be a bit harder than I thought it was going to be, it would be such a comfort to know that I had someone to count on. It is frustrating to feel like a burden, to feel like any favor I ask for is only a thorn in the side of the person I hoped would care for me at my most difficult moments. The lack of empathy or concern is so evident, I can’t help but wonder… do I even matter?
I know I am writing this for all to see, but it is simply a representation of how I feel, of how it feels to be in pain to be overly fatigued and feel so utterly alone. Moments like these, I wonder if it would be better to be alone than to wish that the one person who is available would pay attention. To have pleas for help be answered with ill temper or obvious frustration is nothing short of sad and at moments truly heartbreaking.
Does he not recognize how much work I have put into Christmas, how much time and energy I have spent to create a wonderful holiday for our family? This is the price I pay… the exhaustion, fatigue and pain. It saddens me more than I know how to express…this feeling of not being cared for. It is a feeling, an emotion, and I am certain it will pass. But at this moment, it has me feeling lost and desperate for a different kind of relationship.
It must be challenging to face days like this as the “caregiver” and it must be hard to put yourself in the shoes of the one in pain. It feels as if the illness itself has never been truly accepted in my situation and as if there is a fair amount of denial practiced. What would it mean for him to accept the fact that I have limits, that it is hurting my health (emotionally if nothing else) to have to push forward without assistance or understanding? What do I need to do to prevent these kinds of emotions from building up and to realistically look at my expectations, are they reasonable, am I asking too much?
My wish for anyone who is suffering from a chronic illness, is to have a partner or loved one who is willing and able to lovingly care for you during your bad days, even if they are many, to help you to feel comfortable and to remind you that you are loved. For now, I’ll take comfort in knowing that it could be much worse and that tomorrow will be a brand new day.