Tips are the most important features in my life with a chronic illness. Tips come in many forms. Tips can be learned directly from others, or tips can be made to work for me. I have collected all forms and have made some of my own.

One important person who guides me on a daily basis is my physical therapist, someone who sees my potential that cannot be wasted.

The Importance of Stretching My Leg Muscles

The physical therapist couldn’t emphasize enough the importance of passive stretching in my case. Now, after doing this for almost a month, my body seems to seek the stretch of my quadriceps, hamstrings, and various other muscles that would naturally receive a stretch, had I been ambulatory.

The therapist tells me that my muscles want to work, but they are just not receiving the signal to do so. I find this to be very sad. My left Ankle is showing atrophy, which is horrible, but it can be mitigated by being passively worked out every day. When I was still walking I was using functional electric stimulation (FES) to work out my ankle, but alas, those days are over. So I do what I can to keep the muscles working. This is an important tip, as I rely on other people to help me out.

The Role of Therapists in My Care

All sorts of therapists have become a big part of my life lately, because of a combination of factors. It is not unusual for home care physical therapy (PT), occupational therapy (OT), and speech therapy (ST) to come through my house once a week. What made this happen were two distinct factors: my cry for help, as noted by my neurologist, and that I had the potential to learn to perform independent transfers such as getting in and out of the shower by myself.

One thing I’ve learned is that when I use the toilet, it is important for me to Support the Left Ankle, even if I have to use an ankle-foot orthosis (AFO). In a fit of rage years ago, I threw out my first AFO, which was made especially for me. I overreacted, because my “incarcerated” ankle was starting to atrophy.

Later, I purchased an over-the-counter AFO that I use to support my left ankle. Of course, I was amazed at what I could do with the support. This is an important thing that I would like everyone to understand: Safety and support go a long way.

How I Learned to Cross My Legs and Sit Up Straight

It is important that I not hurt the ankle further, so if I don’t feel like putting on the AFO, I use grippy socks, the type one gets in the hospital. Although this doesn’t support the ankle, it helps prevent falls.

But once I realized the importance of ankle support, I reached a point where it became difficult to cross my thigh over the other leg. Here I implemented something that came naturally, one of my greatest tips. What I have started to do is to cross the two feet so the stronger one is on the bottom and then I simply pull my affected foot onto the other leg so my ankle and thigh cross over. It is such a relief knowing that I can do this. Not having the strength or energy to cross one leg over the other made me discover my own tip.

Another important tip I have found through trial and error is that rather than have someone else pull me back in my wheelchair to help me sit up straight, I use the “scooch back” method. When I do it, I focus on each leg, slowly moving each one back. If I have my own workable method to push back in the chair, I don’t have to rely on others. Personally, I don’t like relying on others.

Comfy Socks and Slippers Make a Difference

The other useful tip in my chest that someone gave me was to wear diabetic socks, which are looser and more comfortable for someone in a wheelchair. This tip led me to be more comfortable and go on to discover diabetic slippers as well, the kind with Velcro closure, so I can adjust the slippers depending on how swollen my ankles are on a certain day. The slippers are so comfortable that sometimes I wear them all day!

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1 Tip I Never Thought I’d Follow

Something that I never thought I would ever do in the name of energy conservation is something I am doing frequently now. On days that I don’t shower because I showered the day before, I wear the same clothes as the previous day. (These are clothes I put on after my shower.) I get creative and wear a nice sweater over day-old clothes. If the day calls for looking nice, timing is everything, because I may put off my shower so I can shower and look nice on a certain day.

Validation From My Therapists Helps, Too

The therapists are my frequent visitors, and since they are “home care” therapists, they are used to seeing people in their homes. I use their tips to get through all the tasks that were “natural” at one point in my life. Nowadays, they are all workarounds.

Yesterday I met the speech therapist, who confirmed everything I thought was strange and wrong with me. This includes swallowing difficulty with thin liquids like water and how hard it can be to just speak. She recognized both issues and is getting a treatment plan in place. She explained how multiple sclerosis (MS) has really managed to mess up the swallowing mechanism. She introduced me to something called SimplyThick, which is a tasteless mild thickening substance that can be put in any food. This makes swallowing a lot easier for me. I cannot wait for tips that she will share with me.

I look forward to her tips and love other tips I have collected. Just the fact that the speech therapist acknowledges what has gone wrong with swallowing mechanisms and speech makes me look forward, acknowledging that none of this is my fault.