It is Friday!!! I haven’t had a bad week even with my blue Tuesday. For the last few weeks in my game day my, with my friends in the building, we’ve been playing this game called Misery Index. It basically is cards that have certain bad things that can happen to you and you have to place them in order based on the cards you already have. Each card has a misery index number from.01 (a paper cut) to 100 (being buried alive). There are like 500 cards so it can get difficult to determine which misery is worse when your numbers are close together like a 42.4 and 48.6. However, I guess not for me. Out of the 4 games we played, I’ve won 3. I am an expert on misery. I don’t really think I should brag because I don’t even understand how they came up with some of the misery rankings. The game creators rank farting on a first date a 52.4 and pooping in your pants in public 42.6. They obviously don’t have multiple sclerosis. I can promise you the pooping in your pants in public or anywhere else is much worse than a 42.6.
On a completely different note. I have been looking at a device called pure wick. It is a catheter for women on the outside. https://www.liberatormedical.com/purewick/. Once again I am thinking about safety. It would be something I could possibly use at night so I could limit getting out of bed every couple of hours. I asked my neurologist about it. She didn’t have patients that she knew of using this but she did know the hospital used the device. She asked me if I have a urologist. I have seen a urologist but not on a steady basis. Her thought was that they might have more experience with a device like this. She was definitely in the belief that if the device works, using at night, reducing the amount I am getting up, is definitely not a bad thing for safety.
Another thing I saw was a bed that can stand you up. https://www.1800wheelchair.com/product/liberty-bed-sleep-to-stand-electric-bed/. I am not up to this yet but it’s good to know that this option is there. I do sometimes have difficulty with my bed which is why the above catheter is a possibility. I can usually get on my bed without any issues but I definitely have had problems getting my legs onto the bed. I have a leg lifter but I always run into the problem of getting it off my foot once I get my leg up on the bed. I just purchased a new one which will hopefully alleviate that problem. I then run into getting myself up on my pillow. It can all be difficult some days and other days it’s fine. I love my bed though so I am really not looking to replace it. I am just happy that there is something for the future.
I am always looking for devices that can keep me both independent and safe. I actually have a phone interview, with the intake nurse for the nursing home without walls program, in a few hours. I am not sure of the next steps after this but I know the process takes a while. Anything I can do or find to keep me independent and safe is a plus. I still prefer to not have an aide 7 days a week but right now that isn’t a problem. I only have 5 days. I promised my family I would try the other option to see what happens. I am keeping my to my promise.