There’s a reason I have an aide for eight hours a day. There’s a reason I don’t work anymore. Sometimes I feel like I’m running a scam, that I should be working or I don’t need an aide eight hours a day. Especially when someone says lucky you. Let me explain something to you and myself, I’m not a lucky girl. I’m not a lucky girl that I’m on full disability and don’t work. I’m not a lucky girl that I’m 45 and have a full-time aide. There’s nothing about this disease that makes me lucky. There is not one day that goes by that I don’t struggle. There is not one day that goes by that isn’t a challenge. There’s not one day that goes by that makes me happy I have this disease.
My aide has been sick since Friday. Due to circumstances beyond my control, I have not had another aide since then. Today is Wednesday, and my body needs help. I’ve tried very hard to limit my activity is to basically nothing for the past couple of days but there’s always something I’m doing even when I’m home. Whether I’m getting up to get a drink, going to the bathroom, feeding the dogs, getting lunch, laundry, making my bed, cooking and cleaning, It’s a lot. These chores that I’ve been having help with, now I’m doing alone and I’m exhausted. I’ve fallen asleep every afternoon, and I’m asleep early every night. My body has limits, and every day those limits it shorter and shorter.
My last doctor’s visit, we increased my Toviaz because I was starting have an increase in accidents going to the bathroom. Now since the increase I’ve had more accidents than I had before I saw the doctor. I sometimes can’t make the ten steps to the bathroom. My new lovely symptom I had to deal with is getting up from the floor. Which went from little issue to tremendous problem within a few months. I’ve blogged about it in the past and this has become more and more difficult each day. I try to never go down to the floor but cleaning my dog areas require it. I’m never getting rid of my dogs so I, right now, have no solution to the problem. Falling down I can’t plan for, it happens and I try to be as safe as I can, but I fall and I have to get up. Sometimes it can take me ten minutes to figure out how to stand myself up again. These are just other reasons I need the aide to watch over me, for safety reasons.
My neurologist once said to me you can’t be working anymore before I left my job. My other neurologist told me I can’t work when we had to renew my disability papers. I still feel guilty that I don’t work even though I know I mentally can never deal with it anymore. I can walk 50-100 feet maybe with my walker. After that, I’m done and usually exhausted. This is the hand I was dealt and I try to be positive about it because it’s my life 100% of the time. There is no other way to deal with it but No, I’m not lucky to not be working and No I’m not lucky I have an aide. I’m lucky I have what I need to help me deal with my MS challenges each day. That’s all.