Accepting What I Can and Cannot Do

The hardest part in my nearly 40-year journey with multiple sclerosis (MS) is coming to terms with the difference between what I think I can do and what I can actually do.

Unpredictability and Fatigue

Let me give you a stark example. I am sitting at my desk with a wedding invitation to which I have to respond. I am no longer just that sweet person in a wheelchair. Things have moved beyond that. Let me tell you how things feel at my end: Everything feels like it’s spinning out of control. The unpredictability of everything — particularly my level of fatigue, but also my ability to move, level of brain fog, and relentless mood swings — is now front and center, swirling around me constantly.

The worst part is that I don't have enough of a brain to deal with all this. How is it possible to not have enough of a brain? I couldn’t imagine such a thing, until I started getting tired when there was too much on my plate. The only way to remedy this is to take a rest. I cannot emphasize enough that it is important to take frequent breaks. I just never know when fatigue will immobilize me.

Accepting That It’s Just Too Much

Now the part about the wedding invitation on my desk.

How will I get a dress, get ready for the wedding, and endure all the movements that go into dressing? Or transfer from my wheelchair into a car, in the winter? And, most tiring of all, how will I deal with all the stimuli and talking to people with compromised speech and a tongue that feels like it’s wading through quicksand?

I realize that I simply can’t suck it up anymore, hoping it all works out. I choose to accept that I cannot, because I don’t really have a choice.

So I have simplified my stress and have chosen not to go to the wedding. In the long game, there are just a mountain of things stacked against me. This is unfair and I know it, but I am pretty sure I need to rise up tall and handle it. All my “responsibilities” in life have slowly been taken away, but only now am I slowly realizing what I can and can’t realistically do.

Some Relief in Saying ‘No’

This is all so difficult to accept. I felt the tiredness around just preparing for the wedding, in addition to all the rest of it. Choices like these, based on what I can realistically do, have now taken on a life of their own.

If I had my way, I would somehow plow through the difficulties and attend the event, but I can no longer do that.

Another example of an upcoming event: A group of my college friends will celebrate our 60th birthday together. We all met when we were about 17 or so, so of course I want to go. But as I thought about what would be involved in doing so, better judgment prevailed. There is absolutely no way I can attempt it. So I said no to this, too.

Things have changed for me; I am definitely fighting less.

I Found Strength in a New Mindset

It has taken a lot for me to get this far. I look at the need to hang back a bit as acceptance. These two situations — missing a friend’s wedding and missing a get-together with my classmates — are two huge things I am missing out on. One of the things I had to do to deal with this was to reframe why I was missing out: Everyone involved knows it’s because of MS, and not because of anything about me.

I have fought long and hard to make living with MS seem natural when it is not. I work twice as hard as most people do to do the same things. It is all about energy, and when I don’t have it, I look down on myself.

I just have to learn that not fighting and saving energy will give me other strength.

Once I have realized this, I have a new mission, which is to forge a new path forward. Sounds easy doesn’t it?

I am the first to admit that I am stubborn, with obsessive tendencies. But in learning to live with acceptance, I am learning to let go of unnecessary stress. The wedding situation has worked itself out with a future visit from the couple. My classmates have agreed to have the party here, so I won’t have to travel to participate.

Where there is a will, there is a way!

None of this is easy. More situations will come up, but I have to think of what is best for me.

Acceptance is not a cop-out; it's a place that has taken a long time to arrive at.