How Hope Keeps Me Going With MS – Everyday Health


A new home addition and an electric wheelchair will help me conserve energy and get to where I want to go.
The concept of hope can sometimes feel like a cliché, best suited for sympathy cards. But in my many decades of living with multiple sclerosis (MS), I have come to realize that hope is what pushes me along, even when nothing in my life is going the way I want it to.
It has been a long winter, so the occasional rays of sunshine bring me newfound hope every day. I am watching daffodils and little daylily sprouts showing themselves in the garden. They look as hopeful as I feel. As I’ve watched them rise up in recent days, I’ve realized there’s a lot for me to look forward to.
Next year at this time, I will be standing in a room closer to the flowers. We are embarking on “Project Mona” this spring: a new, handicap-accessible addition consisting of a ground-floor bedroom and bathroom.
I feel nothing but hopeful about not having to climb the stairs to reach my bedroom. I am looking forward to no longer struggling in a very small half bath that barely allows my wheelchair to enter without scraping the wall. The bedroom will be small, and nothing luxurious, but it will be better than gold to me.
There will be a wide doorway between the bedroom and bath, so I can easily roll between rooms without scraping my knuckles on each pass. The floor will be hardwood, just like the living room, for easy wheelchair movement.
My single request for the bedroom is that the bed be placed in such a way that I can reach both sides of it. Right now, my bedspread always looks lopsided, not properly made.
There will be a large window at the head of the room, a smaller one on the southern side, and a door that will give me access to the outdoors, via an appropriate ramp, in the spring and summer.
I just can’t wait for these changes — and for how different my life will be once they arrive.
Another thing I’m hoping for is to be approved by Medicare for an electric wheelchair. The process of applying was nothing short of a nightmare. It’s taken months, with neurological and physical therapy paperwork going back and forth, and I still don’t have a wheelchair.
The overall plan is to use this device to save energy, instead of taking more medication to do so. Like many people with MS, one of my symptoms is fatigue. In my case, the fatigue can come on suddenly and leave just as quickly, unless it stays around longer.
When I am fatigued, I fall and every activity feels like moving through quicksand. When one couples the fatigue with muscle weakness, the whole thing is abysmal. So I look forward to having less energy loss. Also, the constant wheeling of a manual wheelchair is starting to make my shoulders hurt.
I should find out soon whether Medicare will pay for this device, which comes from a company that guarantees help when I need it, including occasionally tuning up the wheelchair. (If I am denied, there is an appeal process that I may have to pursue. But I’ll cross that bridge when I get there.)
Inside, I do feel a sense of hopelessness that life has reached a point where I have to use a device that I consider “the end of the line.”
But on the other hand, I have nothing but hope that with my new addition and easier mobility, I will have a chance to breathe! With the wheelchair, life will change. Without getting ahead of myself, I am thinking of ramps to get in and out of David’s truck, plus in and out of the house.
Maybe I can even get out of my cocoon, which has been a safe haven that protects me from everything that has been too hard to do. If I feel more comfortable going out with my electric wheelchair, that will be a huge accomplishment in itself.
My third ace in the hole, in addition to single-floor living and easier mobility and navigation, is looking forward to the approval of a new class of MS medication, BTK blockers. These drugs are still in the clinical trial phase, and there are no guarantees about if or when they’ll be approved and available. But if they are proven to be effective, it could change the trajectory of my life with MS.
The planned new home addition, new possibilities for mobility, and a potential new medication have all shown up at the right time in my life, just when hope was becoming harder to find.

Important: The views and opinions expressed in this article are those of the author and not Everyday Health.
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