Today was a very disheartening MS day

Today was a very disheartening MS day

This one is not for my family. This is a bad one, so I give you the advance warning.  Everyone’s been telling me I’m doing too much.I am a little stubborn about slowing down. I  been having a lot of trouble at physical therapy lately. I had been fatiguing not just a little but severely and I don’t know why. It’s the same routine I had been doing since November. Luckily, I had my daughter around when I got home to help me get into my house. Just the 20 steps from my car to my door to get to the chairlift was an ordeal. Today I decided that before I talk to my main therapist, I’d do a test. I always work out in the morning 6 days a week. I had been doing this for 8 years or more. I decided NOT to workout this morning. I wanted to see, is that what is causing the fatigue now at therapy. I learned today, it made no difference. I had the worst MS fatigue I ever had and a look into my future and into my fear.

I went to physical therapy as usual. I decided to do my normal routine because in my head, this was a test. The bike has been my biggest nemesis but I decided to keep it in at the routines 10 minutes at 2.8. I did end up lowering it down to 2.3 but completed the full 10 minutes. I was doing ok which I was surprised with, I wasn’t fatigued. I was getting tired but nothing too bad. Then, all of a sudden, it hit me…bam…complete fatigue. I didn’t have some warning, it was severe immediately from tired to exhaustion. I went to talk to my therapist about fixing the routine and we are going to make changes next time I’m in. I wish that was the end of the story but it’s only the beginning.

When I stood up to leave my therapist office, I couldn’t move my feet well. I almost fell because my walker moved and my feet didn’t. I regained my composure and started walking to my car. I   Made it there, barely, with the help of the valet guys in the parking lot. Once in my car, I called my daughter to tell her I needed help. I made it home, driving being very difficult.  As soon as I pulled in the driveway, my daughter was waiting for me. I opened the car door, put my feet on the ground, and knew I didn’t have enough strength in my legs to stand. So I told my daughter to get my wheelchair. Go figure, it’s not working. So I somehow I got out of the car. I started walking to my house leaning on my car. I got to the spot where I had nothing to hold on to so, I grabbed my daughter, and it just wasn’t secure enough and I slid down. I was now on the ground. Now I couldn’t get up AT ALL. my legs still had no strength and my arms didn’t have enough strength. Not to mention the pain in my arm from the tendonitis wasn’t helping.

My poor daughter tried everything. She got out my travel scooter and put that together but I couldn’t get the strength anywhere to get myself from the ground to the wheelchair seat. The worst thing that happened was me being on the floor. She tried to pick me up but my 148lb body to her 111lb body was more than she can do. Eventually I tried to crawl, but even that was difficult. My hip muscles are weakened so to bring my knee forward is not something that is any easy task. I tried numerous times to stand up again, but it wasn’t happening. After 30 minutes I finally crawled to my door. I was so fatigued I was past trying to try to stand. However to get upstairs I needed to get on the chairlift. THIS WASN’T HAPPENING. I sat there on the downstairs floor and cried, and cried and cried.

My legs were dead weight and my arms couldn’t lift me. It was the most helpless feeling I ever had. It was my fear come true. I laid on the floor without being able to do anything. It was disheartening, crushing and scary. My daughter sat with me and held my hand while I cried. It took another 20 minutes until we figured out how to get me on the chairlift. Once I was off the floor, I was able to stand a little. I finally made it to my couch. I kept her home for the remainder of the school day, in case I needed help. Today was all my fears realized. I don’t have the strength in my arms to lift my body if or when I can’t use my legs. I really hate this disease. It’s so unfair.

 

 

15 thoughts on “Today was a very disheartening MS day

  1. Sorry you’re struggling right now Jaime. I wish I had something great and uplifting to say to make you feel a little better but I’m still struggling to find words. So I got nothing. Just know you are in my thoughts.

  2. 🙁 Although I have ‘liked’ this post, I don’t, if you see what I mean. I am so sorry that you have had such an awful day, it sounds very, very scary. What a brilliant daughter you have to lean on. I really hope that this is a blip for you, thinking of you xx

    1. Funny you said that because so many times I red a sad post and I hate how you had to click like. Thank you for your support and kind words. I’m better now but it was a rough morning. Here Hoping for a cure 💛💛💛💛💛

  3. As a member of my local ambulance squad and rescue squad. We get frequent calls for a lift assist. Sometimes the officers will help you up. We get to know our regulars and never find it an inconvenience unless it’s the obese fat drunks..lol. Don’t hesitate to use the 911 system or get the local pd station phone number. It happens more than you know. Sometimes the elderly roll out of bed and can’t get up. Would make for a good commercial. .lol. your daughters wI’ll be free to go to school in peace knowing that there is someone 24/7 free for a lift assist

    1. Thank you. It’s part embarrassment that stop your fingers from calling. I was fine sitting at the bottom of my steps until I could regain my strength. I knew eventually it would come back. However the information is good to know. 😘😘😘❤️❤️❤️

  4. “Like” doesn’t mean like. Weird, stupid, modern world of instant communication. I acknowledge your awful day. I don’t enjoy it.

  5. I feel for you as I’ve had the same issues. Back in 2015 I fell coming out of a restaurant. Thankfully my daughter and husband and several bystanders were able to assist me otherwise I would have been on that ground for who-knows-how-long. In fact, I actually ended up fracturing my ankle. Very painful. I hope you are doing better and let’s keep hoping there will be a better future for us when a cure is finally found.

  6. If you haven’t before, check out Terry Wahls on YouTube. Her TEDx talk sums up her story which pretty incredible. I have MS as well and this has helped me and many others. It was the best information I’ve found, yet. Good luck to you!

    1. Thank you I have read about her. I actually became vegan recently in a combination of her and many other books I’ve read. Thanks so much for the information many too many haven’t read it

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