My four walls of multiple sclerosis

My four walls of multiple sclerosis

I wrote this blog post on November 7, 2016. Almost 4 years ago to the day. I was originally going to just link it in this post when I realized I would probably be repeating the same general things. Obviously Covid has made my MS daily activities null and void but I’m not complaining. Truthfully my MS is much different 4 years later. I’m mostly in a wheelchair now. I’m in a new place, not my apartment anymore. Things are much more difficult now than they were when i originally wrote this post. I have a full-time aid, I am not dating nor have I been for quite some time, I don’t have my beloved Boomer and life got even smaller. However, I’m still happy. I love my dogs, I love where I live, and I just deal with each MS thing as it comes up. It isn’t a perfect life but it works.

My four walls of multiple sclerosis:

I always wondered what is going on in boomers mind when he looks outside.  Boomer doesn’t get up and go outside easily you have to convince him so what is he thinking when he gazes? I’ve noticed lately  I too have been glancing out my big window but I know what’s going on inside my mind. My life has become my apartment. The four walls of my home. As my MS has become worse I tend to stay home more and more. I was always the couch potato I think that was just me by nature but now I find myself more secure in my own surroundings. Thus making my couch potato mentality more apparent.  The thing with being home is I know everything at my house. I know what walls I need to hold onto. I know with chairs are going to rock that won’t have me if I fall. I know exactly how many steps I have to make it without having anything to hold onto. I know how many steps to the bathroom, to the sink, to the refrigerator. I know I’m safe.  My world became smaller as my MS got worse.  Going out is more of a challenge these days even to do the smallest thing.  I participate in daily MS activities but that takes a lot out of me and it’s usually enough to drain the energy out, leaving nothing left. So I end up coming home and spending the remainder of the day and night on my couch until I go to sleep and do it again tomorrow.   Understand I have more energy in the morning. I still wake up every morning to work out, meditate and write my blog before my MS activity begins. Sometimes they are in the morning but sometimes it could be more towards the afternoon. Either way it’s one activity and that usually the end to my day.  I even broke it off with the guy I was dating. He was really a nice guy he treated me so well but it takes energy to date and I just don’t have it right now. I have to be honest I don’t know if dating and a meeting a man is going to be in my future. I decided to leave that one to the universe. If the universe puts it in front of me and feels that’s what is meant to be, I’ll know it. Maybe my energy level will come back where I can put more into it which would be great, but at this point it’s not fair to him or anybody else. What I think I decided is I’m better off with the dogs. They’re my companions and right now the rest of it isn’t as important as I once thought it’s was.  I must thank this guy for not only being wonderful when we dated but for being wonderful when I told him the truth. There really are good people out there that deserve all the best and he is definitely one of those. I’m so happy that he has entered my life and regardless where the relationship goes I know I made a friend.

My stage of multiple sclerosis is two parts relapsing remitting MS and secondary progressive MS. The secondary part has no medicine to help fight the disease. I have slowly been progressing and I’m lucky because it is still slowly but it hasn’t stopped. Unfortunately we have moved up the scale to the hardcore relapsing MS drugs that has shown some promise to stopping the progression, even though they are not intended to do so, and they’ve stopped any relapses but not the progression. I see both my neurologist in the next coming month but the answer is still the same. There is no drug for secondary progressive. I think that has been through hardest pill to swallow, no pun intended, knowing there isn’t a way to stop it yet.  Knowing when I go to the doctor that even if we talk again of changing my main MS drug it is still going to be geared for relapsing MS not secondary.  In the end even my doctors can help.

I want to tell you I’m not sad that my world has become smaller, it needed too.  This blog post I’m sure sounds sad. I want you to know I’m very happy in my four walls. I’m happy in the work I’ve done in A Course in Miracles. Im so happy and proud of my daughter who will be going to college next year. I’m so happy with my dogs. I’m happy with my life. This isn’t a sad post, it’s a real post. My world became smaller to become easier and there is nothing wrong with that.  I love my four walls and gazing out of my window too.

4 thoughts on “My four walls of multiple sclerosis

  1. Another great post. Becoming comfortable and accepting of our four walls, smaller world, and forever challenging MS is healthy for us all to recognize. I do believe there are people out there that will love and accept us for who we are. Don’t push them away, they have come into your life for a reason and that reason is you 🙂

    1. A very true statement. I have to also learn to stop apologizing for choosing my 4 walls. It is set up for my disability and the place I feel safest. I shouldn’t apologize for that. I welcome anyone into my space. ?

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