5 Challenges. 5 Small Victories.
Today's prompt was to make a list of the 5 most difficult parts of our healthcare focus. Then we were to make another top 5 list for the little, good things (small victories) that kept us going. So here are my top 5 lists.
- Walking is painful.
- I cannot drive (yet)!
- I need quite a bit of help at times, especially during flares, to do simple things like laundry or other housework.
- It takes a lot of planning for me to go anywhere. I have to make sure I take medications, briefs, an extra set of clothes and my wheelchair.
- The exhaustion is terrible in spite of being on Provigil, which does help a great deal. I cannot imagine how bad the exhaustion would be without the Provigil.
5 Small Victories
- I can walk, despite being told by doctors that it was highly unlikely I'd ever walk again. So what if I still use a wheelchair at times when there would be too much walking for me? So what if to walk I have to use forearm crutches or a walker? Who cares? As long as I am doing something I was told I wouldn't be able to do, I don't care how I do it! I limp and lurch along which causes people to stare at times. Oh well. I don't care what strangers think. All I care about is my family, especially my son. He has no problem with me using ANY item I need to use if it means I get to go to his school programs or that we get to go out and do things together as a family. If he doesn't care, why should I care what anyone else thinks?
- I can live at home and not need someone with me 24/7. Another thing that I was told by the doctors was unlikely to ever happen. It was either the hospital or a nursing home for me in their eyes.
- I can safely shower ALONE. Pretty good for someone who, since 2010, had to have help in the shower until recently.
- I can do dishes at times. I can also cook, help with laundry, and mop the floors when I am not in the middle of a flare as I am now. So what if I need a bar stool to cook and do dishes, it means I get to do something I love doing like cooking and makes something I really dislike doing, such as dishes, easier on my body. Who cares if I look silly with a laundry basket strapped around my waist? I can carry the laundry to the washer and bring it back when its done drying. Who cares if I mop sitting in my wheelchair so that I don't chance slipping and falling on the wet floor?
- I recently took 2 steps. Not a big deal to most people, except these were steps I took without my crutches, walker, cane, or holding on to ANYTHING. These were 2 totally unsupported steps. Of course I had my braces on since I can't stand without those.
I guess some of these victories are not all that small. But, I have learned to celebrate even the really small things. Such as being able to open a candy bar wrapper. The first time I opened a candy bar wrapper on my own after being sick and having the hand/wrist/arm contractions ease up, I took a picture of it and sent it to my hubby and Mom. At that time, even something that insignificant was HUGE for me.
In PT at the nursing home, I learned to celebrate even the smallest of improvements since they often took a lot of hard work. And I was taught that the big improvements are made up of a series of smaller ones. So each step forward towards a final goal should be celebrated.
When a resident did something major for the first time in the therapy dept., it was usually acknowledged by the other residents and the staff. I cannot tell how many times, while my therapist and I were walking through the halls, that we were stopped so that another resident or a staff member could congratulate me on how well I was doing, or by clapping, grinning, and giving encouragement. Even residents who couldn't speak would cheer me on in their own way! There were many days I might have been tempted to throw in the towel had it not been for all of the encouragement I got. It wasn't just what I got at the nursing home, it was my family, my friends, people online that I don't even know but who are friends of people I know...all of it together kept me determined to live up to that encouragement.
I kinda joke that I had three awesome men behind me(see last picture #HAWMC post #25), supporting me throughout my whole stint in therapy. My hubby and my son of course were behind me, cheering me on. But in a more literal sense, I had my therapist, Jim, behind me as well. Not only was he a major source of support and a huge cheerleader, he was, in a very literal sense, behind me all the way. Just the nature of teaching me to walking again means he walked behind me holding on to the gait belt to support me and keep me from falling. In all the months of working with him and hearing other residents speak of him, I only heard ONE negative comment about Jim. Given that the comment was from someone who has dementia, and given what I know of Jim, I had to discredit that negative comment. It simply cannot be true. The comment was that Jim came in very early on a Sunday morning wanting the resident to jog around the building outside in the cold. First, PT generally did not work on Sundays, an occasional Saturday, yes, but I don't recall EVER seeing any of the PT staff on a Sunday. Second, Jim generally worked as late as 6pm, which meant since the staff usually had 8 hr shifts, he came in at 10am. Even with me being a major night owl, I don't consider 10am to be "very early". Third, I certainly do not think Jim would ever ask a resident who has congestive heart failure to jog around the building, outside and in the cold. That just sounds so far from something the Jim I know would do that I have to believe it was the dementia talking. Aside from that one person, every single resident that Jim worked with who made a comment to me about him had only favorable things to say. I should say highly favorable to be honest. Even other staff members only had good things to say about Jim. The only things I ever heard that were remotely close to being negative about Jim were things like "Man he really worked us out hard tonight." or similar comments. Those were from the other therapists who had decided they needed to get healthy and begin exercising. So they all exercised together after work. And it seems as if Jim took the lead in making the plan of what exercises they'd do. So I hardly count those comments as negative. Even residents who didn't work with Jim but saw him in the therapy room while they were in there, or while he was working with their roommate, or walking with a resident in the halls, complimented him. It is no wonder that when the Resident Council began voting on an Employee of the Month, he was nominated in the first month and voted as the first Resident Council Employee of the Month.