I can’t wait to be able to go places in my power wheelchair. I do have one big fear: The Restroom. Right now if I find a place with a restroom that has a large enough stall to drive my chair in I’ll be fine alone. I have enough left arm and left leg strength to transfer by myself.

When we are able to get a wheelchair van, Tony and I have a couple of trips we want to take one last time. It’s not going to be so simple stopping off at any gas station to use the restroom like before. I am getting weaker whether I want to acknowledge it or not. I may need his help. I imagine myself falling onto a floor of nasty piss. I get sick think of it.

I don’t know how to go about having him come in. If it’s a one toilet room and big enough to accommodate my chair, that’s fine, we’ll just lock the door. It’s the most common type of restroom that has me worried. The ones with about five stalls and one large handicapped accessible stall. I know a lot of women will get dramatic with a man in there, even though it’s obviously to help me. I mean it’s not like he’ll be looking through stall cracks. I just know how some women are.

One thing I know is Tony will have no problem with it. He will do what has to be done and if someone has a problem, he’ll let them know real fast it’s their problem. I also know if he thinks I feel offended, he will get angry and let everyone know. There are so many great things to having this type of caregiver. The downside is he usually doesn’t let it go and he stays angry. I want to have a good time. I can move on from rude people for the most part better than he can, even though I have had my moments.

I want these trips to be enjoyable. I’m beginning to wonder if they’ll even happen. I know the longer we wait, the more I will be dependent on him. I’ve already gone from expecting these trips to take place while using a rollator for walking, to knowing I’ll need the wheelchair to be safe. What other abilities will I lose before we get to go?

Today hasn’t been the best day for me but it could be worse. I don’t judge a good or bad day the same as before ALS. It’s so true, ALS changes everything! I’ve had more cramping today than the last couple. Strange as it may seem, It’s been a good day to have a bad day. I was able to enjoy time out over the weekend because of less physical symptoms. It’s bad to have this type of day when I want or need to go somewhere.

My shower was the biggest ordeal of the day. I can’t wait to get my shower chair with a back. Right now I’m still using a bench type and sometimes I feel unsteady. It’s getting harder to shave so most times I don’t, but then I don’t feel clean. That mixed with cramping and recognizing my weaknesses leave me feeling bitter and Tony frustrated. We came close to real arguments a couple of times. We both stopped it in time. We’re both grieving. This is not the life we’re supposed to be living now and we are both coming to terms with the forced changes in our own way.

I’m going to try and make the best of the rest of the evening. For whatever reason my mind has chosen to focus on restroom use when traveling more than anything else today, so instead of going over everything I decided to share that and hopefully move on. Thanks for reading today’s rambling.

Please visit my website: http://thealsexpress.com

Until next time, take care,


  1. rakoff says:

    I very much appreciate these glimpses into my future. You are courageous.

    • aprilals says:

      Thank you. I know everything helps. I’m always thinking ahead myself and I’ve learned the most from pALS. I know a lot of my posts are about my feelings any given day. I also want to share anything that makes life easier for me or my caregiver. The smallest things matter with ALS.

  2. pendantry says:

    I accepted your invite to drop by http://thealsexpress.com … I thought you should know that there seems to be a problem with the images on that site. Have they got lost?

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