The daily life and experiences with multiple sclerosis

The daily life and experiences with multiple sclerosis

Yesterday was a bad day. First my doctor visit went as expected,  which was nowhere. What I mean, is that not much could be done at this point, my symptoms are treated symptomatically. He doesn’t really think  that I’m experiencing an MS hug, I don’t even think he really understood what an MS hug was. He’s been my doctor for 19 years and for the first time ever, I was a little shocked. Especially since the first thing we were discussing as soon as I walked in is the office was the new drug Ocrelizumab versus Rituxan.  What also occurred to me yesterday, when I was in his office, I increase my baclofen when I hurt my shoulder I also took it upon myself to decrease my baclofen.  I wonder if I caused some of the muscle spasms to return. Either way he decided he wanted to bring back Neurontin for another symptom that I have again I came back and start there. Either way he decided he wanted to bring back Neurontin for another symptom that I have again I came back and start there.

Every time I leave one of my neurologist doctors office visits some sort of depression kicks in.  There’s something about going there not feeling great and walking out still not feeling great and really knowing, st this point, nothing will help you feel better. We try to treat each symptom, to alleviate some of the discomfort or pain but nothing will take it away completely. So basically every time I leave my doctor nothings ever different and I get depressed because I know that. I’d love to say that was the end to my day, but it wasn’t.

I’ve mentioned this before in past blogs, I really wasn’t going to do it today, but I had an accident by the time I got home yesterday. Came completely out of the blue don’t know why even.  That is what completely threw me over the edge yesterday. I walked in I have couldn’t even make it up the stairs. Then, of course, had to deal with the mess, shower again, change… Guess what I have a ms. and alL that stuff exhaust me. So now on top of everything I exhausted myself trying to do it all in a short time because what else was I going to do.?I’m alone.  And then that thought hit me, I’m fucking alone. My daughters going to college next year. My two dogs,I love them with all my heart, they can’t help me. My mom and stepdad, God knows how they do it, still work. In the middle of it all my mom calls, leaving me a quick message on my machine to check something out for her. All I know is whatever she was saying I was cursing at her in the bathroom, like this was all her fault. I called her back in absolute hysterics and the only thing that I can think in my head at that moment I had enough. I had  enough of a ms. I had enough of this disease. I had enough I was done. Could you imagine getting that phone call from your kid? She was walking into work couldn’t even talk to me. She had to pull me down from the ledge in one minute because somebody was waiting for her.

It’s took me about 15 minutes to come back to myself. Everything was clean, including myself. I was able to go sit down on the couch by then, put on the tv.  My one dog came over to me, licking my tears. The puppy came over for the first time ever just laid down on my lap, instead of being a crazy one. I was able to text my mom to tell her OK.  The conversation later that evening is maybe I should look into getting help part time. I’m 45 years old. I have all my marbles. I have multiple sclerosis and I had a really bad day yesterday.  Normally I try to make this blog as positive as I can. There are some shitty posts, there is some sad posts, hopefully some humorous post, but each one of these post are real.  This really is my daily life and experience with multiple sclerosis.

 

 

 

 

5 thoughts on “The daily life and experiences with multiple sclerosis

  1. I didn’t talk to you yesterday and now I know what your day was like. I am so sorry to hear this. I do think once bee leaves it might be good to explore a better situation for you i.e.: one that helps you get in and out of your house easier for starters and makes tools you need like scooters etc more accessible. And part time help. Definitely. And start looking sooner than later for sure so you are prepared. I think being pro active in general is good. Some things can’t be avoided but maybe some things could be a little easier if we can set up some situations that can work for you. I am happy to help. In the meantime thankfully some days are good and I hope today is one of those.

  2. My neurologist likes to tell me “that’s just the progression of the disease”. I hate it when she says that! I am only taking symptom related drugs now. No MS specific drug. As I said in response to you post today, I appreciate your strength to get help!!

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