let’s be real here, if things were going well, I’d still be working. I’d go to work everyday, be around different people, be challenged, strive to be the best and probably be like 76% of the world, stressed out. However, I’m not well, I’m not stressed out like the 76% but my life isn’t easy. I love the look I still get from some people when I tell them I don’t work anymore. You can see their mind questioning you even though their voice is trying to sound sympathetic. How could someone understand that isn’t walking in your shoes? The truth is, no it’s not hard going to one or two MS activities, coming home, and resting on the couch for the day. However let me explain a true day in the life…
Yesterday I woke up at 5:45 got up and started my day. My daughter gets up too for school while I do some exercise in a chair. Yesterday was Zumba. I have to regain some strength after so I sit on the couch, I blog. I then need to get ready because I have physical therapy at 8:30. Don’t shower yet because that will require rest and I won’t have time. Physical therapy wears me down and I finish about 10:00. I’m hoping my feet can handle one stop. I need to run into Trader Joes, an easy and not big grocery store. I’m missing 2 ingredients for a recipe I’m making that wasn’t delivered on my large food order the day before. This was VERY difficult to do. My legs are past fatigue and every step requires complete concentration so I don’t trip. I walk very slow and very carefully. The two items I needed, the quick trip to the grocery store takes about 15 minutes. Average person would have been roughly 3 minutes. Now I’m home need to make the 25 steps from my car to my door and in between there are 5 steps I need to take unaided. Big deep breath and I take the first step. I’m relieved when I am able to hold onto something again for balance.
I have to once again ret on the couch because my legs are spent. I can be there for an hour, sometimes 2 before I feel strong enough to move again. I go into the shower when I am ready. Another huge ordeal. I have a chair and safety bars there but it is the movements, the getting undressed, in,,soaping, shampooing, rinsing, drying and dressing. The entire ritual is exhausting and I haven’t put on makeup or done my hair. I once again hobble to the couch. Again I rest waiting until I have the strength the finish my hair that has now mostly dried naturally. Usually I don’t wear makeup. I try to get something to eat while I’m already up so when I finally sit down I can sit for a while. All this is happening and it is maybe now 12:30.
From this point on the more up and down I do off the couch the worse my legs will get. So if I’m cooking dinner it is being done in small stages because my legs can’t handle anymore. It’s at this point I usually wish I didn’t have to ever get up to use the bathroom. When fatigue sets in my legs, it effects my whole body. My arms and hands will also have issues. Sometimes I won’t even be able to hold my regular silverware at dinner because it’s too heavy and I use plastic. All I did was exercise in a chair, go to physical therapy, go into a food store for 2 items and shower….that is a day in the life with MS…this sh$t ain’t easy.