I am a PSA Survivor adapting to my new way of life in everything I do!
I was a workaholic. A clean-aholic and hyperactive person before PSA changed all that. I have had it for 35 years, but it wasn’t until a car accident that it hit me so hard and has disabled me from working and the way of life I once knew. It is hard to be a hyperactive person suddenly inactive. So, I decided I could either let the stress (which we all know causes us flare ups, pain and skin irritations) do me in, or I could adapt and change how I was doing things. So I constantly challenge myself to find a new way to do something. Here are some things I have changed to make my daily living more suitable, maybe you will find something in them to help you.
Put a comfortable chair in the shower – mine is a camp chair, cloth seat. It has a cup holder in it so I can put the shampoo in it & arms so I can lay the washcloth over it. I keep it simple and wash with shampoo as well. The chair is super lightweight and washes off easily after the shower. I have to have my cane nearby to ensure I can get out of it. Use a shower head that I can hand hold and soften the pressure to my choice. To get in the tub style shower, I sit (on a hand towel) on the side of the tub, swing in slowly with both feet and using my cane for steadiness, then stand and do the same to get out. But currently, I have a stand-up shower and don’t need to do that.
Brushing and Drying my hair
I sit in a chair or on the commode & bend forward and brush my hair upside down. Same to dry it. I have even done both laying in bed with my head off the edge of the bed either on my back or on my belly. When I am in a bent position in a chair, or laying on the bed my arms & shoulders don’t hurt as bad and have a longer endurance. I have learned to accept wearing my hair in a bun held together with one Large clip.
I only drive when I have to and try to do whatever errands I must on the days I feel fair to good. I plan my trips ahead of time, so I can make my stops with as minimal effort of getting in and out of the car as much as possible.
I currently have a car that has a backup camera, so that is really helpful because turning around is too painful. But when I did not have that luxury I had found a way to park in the garage by using a string and tennis ball – First park the car where you want it to be each time, then you hang the string and ball from the ceiling so that it lines up with the back window of the car to just touch the back window in the exact spot you want the car to be parked each time. Then, in your rearview mirror as you park backwards you just line yourself up with that ball and your set! You can do the same if you like to park forward in the garage but I prefer back so I don’t have to back out in to the traffic area.
I usually go with a friend because I fatigue so fast and out of no-where, I mean I am fine and then suddenly I am so fatigued I don’t think I can go on. Or my feet start burning and are in so much pain I can’t continue. She also reaches the top shelves for me, because though I am tall and was always the one customers would say, “Hey can you get this for me?” I am now bent and my muscles around the ribs in my back are so stiff (I call them my “reachers”) and painful, it feels like moving them wants to crack my ribs. Anyway, I have accepted using a shopping cart that has a motor, even on some days when I enter the store and feel good – I go ahead and take the motor cart to “Prevent fatigue,” because as you know it comes on fast and at the worst of times so I just don’t need to egg it on by being stubborn! I have gotten really good at driving that thing too!
Hugs and handshakes
I have to suck this one up an awful lot of the time. People just don’t know you hurt that badly and you don’t look that fragile. Anyway, at Mass sometimes I just won’t shake hands because people grip me like they have a vice grip, it makes my hands hurt anywhere from days to months afterward. They probably really are not gripping that hard but for me it feels like they crushed all my bones. Hugs: I try to come in at them sideways and that works as we hug sort of shoulder to shoulder because then their hands tend to go to my other shoulder or arm and that is not nearly as bad as if they place them on my back with a straight on hug.
Caring for the dog
The Dog: I feel terrible about days I can’t walk him. I have a wonderful neighbor who has offered to and I decided to take her up on that. When I have good days I walk him once or twice. Sometimes, to give him exercise I get him up on the bed (he is smallish 20 lbs.) and play tug-a-war up there, at least it is some exercise.
Managing the stairs
If they are the standard 8” or 10” apart steps it is very difficult to manage. I have learned to take the stairs easy – to heck with how long it takes – I take just one step – finish it with both feet – then on to the next. Going down is harder for me than up so I step going down in a sideways position. Always using the handrail and cane – I just step down one at a time finishing that step then on to the next. It is such a relief when I do it this way. I end up not being in pain like I would if I did it the usual way. I stay hypervigilant so that I know if anyone is behind me and I step aside to let them pass me. I typically will joke about being slow, and that puts them at ease. They appreciate it and after all, it doesn’t slow me down any!
Carrying packages up the stairs
Well I have to do this on occasion as I have stairs into my place. Though, my landlord was very kind to change them from the standard 8” to 4” so I can navigate them fairly easily. Anyway, I set the bag or box on the railing – the railing takes the weight of it as I slide It with me as I go up the stairway. Also, the first landing – where you enter/exit the doorway, is just about chest level, so when I have several grocery bags, I walk them from the car to the landing, set them up there, and then I go up the stairs and pick them up one at a time in to the house. That way I am not going up and down and up and down repeatedly.
Stores and assistance with packages
I always ask them to pack the bags lightly. I have decided some time ago not to be shy about asking for assistance for things I need. I will try to open doors myself but if someone does it for me I am grateful, & I let them know it! I will try to do everything myself, but if someone does it – hey – bonus! I find people are very helpful to me particularly when they see I am making an effort myself, they seem to really go out of their way to lend a hand.
I am terrified of falling – since I had this PSA more intensely in the last 10 years, I can’t support myself on my wrists, I can’t support myself in my hips or my ankles and I do all sorts of strange contortions to get myself up from a position on the floor if I have something I can lean on etc… So were I to fall out in public or on a country road walking the dog, I just worry I won’t be able to get up. So I always carry my cell phone – at all times and ensure it is charged up ahead of time. Also, even if I am feeling good I take my cane. Yes, some days I don’t feel I absolutely have to use my cane, I think, well I am only going to go this far and I will be fine, but occasionally I am fooled. I start out not using it and ten minutes later I wish I had it due to either the fatigue or the pain in my feet or hips or back any of which flares up very suddenly.
Housework and cleaning
Housework: Due to fatigue this is a hard one, because I am a clean fanatic who was tortured knowing she must accept a lived-in look and feel to her home but the point is I have accepted it because it does me no good to worry about dust bunnies I can’t see, or clutter I can. I have always loved to clean. I set goals for myself to accomplish something each day and it helps me keep the place up and my spirits up too. Dishes I wash by hand for lack of a dishwasher – I can sit on a stool to do them when I am fatigued. Dusting gets done from whatever sitting position I can accomplish it that day. So from the couch, I can dust the end tables and tv etc… From the dinner table, I can dust off the window sill and the chairs, the coffee maker and toaster (which I put on the table now so it is all easier and nearby for less getting up and down). The really high dusting waits for a day I am not so fatigued. Swifter brooms and mops work real nicely for the floor. When I want to vacuum I sometimes don’t have the energy to push that thing so I only use the hose with an attachment – I have a hard floor – not sure that would work on a carpet. Anyway, the hose does some of the high dusting on those other days. I have not figured out windows yet, but I will. Cleaning the fridge, I sit on a low stool because I can’t bear the bending and stooping and standing repeatedly. I can reach all the shelves and the walls & the drawers in the fridge on the stool very easily. Before I sit down, I have my warm water, vinegar, and cleaning cloth and drying cloths by the stool so I can do it all in a few minutes without having to get up and down. For making the bed, I have sheets that are far larger than required for my bed – it makes it easier to toss them over and ensure they will fit. I toss all the sheets and the covers on to the bed – sometimes I can’t toss, so I sit on one side and scooch it over into place. So bottom sheet, top sheet, and blanket are laid on the bed at once and then as I sit on the edge of the bed, I lift the blanket up enough so I can tuck the sheets in underneath and voila, it’s done!
Locations of things
Well sometimes you have to just do what works for you and not worry about what anyone else might think. So, my pantry closet is in the bedroom! That is where I have a big closet that has lots of shelves which I can reach without any effort! And who really cares? I don’t have much of a wardrobe anyway. The kitchen and bedroom are next to each other. I can fit everything I own in one dresser. It was either that or try to keep reaching things in my high up kitchen cabinets and that just wasn’t going to work. But if I had the house I used to live in, that would not work, as the bedroom was upstairs. So I think I would have gotten one or more of the dressers, put them near the kitchen and put my pantry in them or some shelves or something like that. Point being things don’t have to be typical in how you do them, or how you live, they just have to be done in a way that helps you survive!