The MS Warrior in Me Is Getting Tired

I am a warrior who has lived through the initial inflammatory, relapsing-remitting phase of multiple sclerosis (MS). Progression into the more silent, secondary-progressive stage of MS, along with the robbing of physical and emotional abilities it entails, has been going on for more than half my life.

So much of my person has been taken away. I suppose it is only natural that I am getting tired. My chronic illness has been with me for almost 38 years. I was diagnosed at age 20 in 1986, and I am now 57 in 2023.

I am also dealing with aging, just like everyone else. However, MS puts an additional twist in my natural timeline of life in general. I now feel like someone 10 years older than I am, because things that are happening to me more typically happen to older people.

Let me explain. When I stopped walking, in 2020, I knew my MS was worsening. Just like an older person, I now was losing my abilities, except I was in my fifties. So everything happening to me was not because I was old; it was because I have MS.

My partner, David, and I recognized my ever-changing and unpredictable physical and emotional state brought on by the MS. To accommodate this, we spent much time and effort orchestrating the construction of a handicapped addition to our home. Besides being a lifesaver, this room has made me recognize even more clearly the changes in myself. I have made my main focus making everything I do easier than before.

FreedomCare Lets Me Stay Home and Choose My Caregivers

I am about to enter a new caregiving program known as FreedomCare, a CDPAP (consumer-directed personal assistance program). To be a part of this, one has to be enrolled in Medicaid and to live in a state where FreedomCare is offered.

The idea behind this program is to allow persons with disabilities and older persons who need care to age in place, rather than have to move to a nursing home. Many persons would rather get their healthcare at home or be looked after by friends and family, not be stuck in a sterile environment.

Initiating the program requires completing multiple forms and producing IDs of various sorts, and the main caregiver has to get vaccinations required by the Department of Health, among other tasks.

Other people have told us that all this grief is worth it in the end, and beginning in May, Medicaid will pay for the helpers that I’ve chosen.

I Need Some Help, but Some Things I Still Do on My Own

David was recently away for the weekend attending his nephew’s wedding, so these two days were a trial run for me and my helpers as they get to know me.

In my mind, I am dealing with a dilemma: I need some help, but not all the time. I definitely need someone to make meals and someone to make sure that my transfers into and out of my wheelchair are successful in the morning and at night.

Except for the meals, which is huge, I maintain myself during the day. Help is always available if I need it. This is the sort of information I used to ascertain my needs when applying for FreedomCare.

David is my primary caregiver, since we live in the same house, and he is here most of the time. I dress and shower on my own with someone standing by. I would like to keep things that way until things change.

I’m Still Tenacious About Solving My Own Problems

Meanwhile, I’m noticing a stubbornness and tenaciousness in the way I’m becoming. I would like to tell you how my personality has developed that sense of tenacity, sort of like a dog with a bone. It was always in my nature to figure everything out so that things happened smoothly and efficiently. Those characteristics have simply been transferred to present dilemmas, because I don’t want to lose independence.

One problem I’ve worked on recently is a side-to-side transfer from my bed into my wheelchair, and I’m pleased to say that I have finally figured out how to do it.

I bend forward so my chest is almost parallel to the floor, hold the armrest that’s farthest away, and use the energy in my legs to swing my buttocks onto the chair. I also push off the bed with my hand to get momentum, but by using my legs and buttocks, I don’t need to put a lot of pressure on the hand that is pushing off the bed.

This took a lot of practice, but I wanted to master it to the point where it felt right and became second nature.

Independence Still Means a Lot to Me

I will pursue a dilemma until I am satisfied. I knew something didn’t feel right. The body mechanics of the nose over the toes and bending the back gave me more support. This is just what I needed. This way I don't go to bed and wake up with dread every day as to how I will get in my chair. Not to mention that being able to do this on my own means a lot.

I think many of us need to give up some independence to gain independence, which is why I’ve brought FreedomCare into my life.