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Looking Ahead to a New Year With ME/CFS

Image of candles lit up on a snowy ledge.

by Jody Smith​

Hey, it’s the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I’m not talking about New Year Resolutions. I ditched those years ago.

Me, I have a hard time looking to the future. When it comes to scheduling and planning and organizing, I can only deal with a couple of weeks at a time. But I am not one of those people who has a One Year Plan, a Five Year Plan … and I can’t even conceive of anything further ahead than that.

I envy those people who do this, quite frankly. But … my brain can’t handle it and I’m afraid to look forward. And besides that, any plans I might make are liable to be overturned against my will at a moment’s notice.

Starting a day or two before any appointment or coffee date or family event, I begin hoping that I won’t get up crippled or addled, and have to throw everything over yet again.

At the beginning of any business phone call or conversation with a clerk in a store, I have in the back of my mind a concern that I could suddenly lose the thread completely as a mental haze descends upon my ability to form thoughts and words.



So I have a certain distrust for the usefulness of planning. I have learned that no matter how intensely I want to do a thing, no matter how important it might be to me or to others … this doesn’t guarantee that I will be able to follow through.

Mind you, I do make plans, but they are almost always tentative, penciled in as it were, with the oft unspoken understanding that it may never happen. All concerned must be aware that I may have to back out without notice.

Let’s say I’ve promised to babysit one of my grandchildren on a particular day. And let’s say that the night before, my foot (or arm or shoulder — take your pick) begins to ache, swell and become weak and limited in motion. And let’s say by the next morning it’s gotten so bad that I have to phone and cancel and leave my family in the lurch.

Or maybe it hasn’t gotten too bad, and I decide to risk it. And halfway through the day I realize I am not going to be able to lift my arm to carry that grandchild or turn the steering wheel or get my coat on … And someone has to come and rescue me.

Family birthday get-togethers have been torpedoed because I am too unwell to be able to sit in a chair without severe pain, or I am dressed in a ratty night shirt and housecoat, due to being slathered with castor oil.

If I’ve recuperated somewhat over a period of days or a week or more, maybe we can go ahead with our plans, but the grandbabies have to be restricted in how much they can climb on me because just one wrong move can throw me back into a relapse.

Or let’s say I have a dentist appointment. And the night before the muscles in my neck or shoulders start to cripple up. Or my foot becomes swollen and I couldn’t put my shoe on if I tried. I have to cancel my appointment on the day of, and either have to pay anyway or at the least be an inconvenience for my dentist.

When this kind of unpredictability is on the agenda, let’s face it. Planning is for suckers. For masochists who like to disappoint themselves and others.

And events have to be chopped up into little pieces if they are going to work well without sending me into a crash. I was out grocery shopping the other day — something which I know many of you can only dream of doing. I know I am fortunate to be able to do it at all. There have been several years when I could not.

I’d been in the store for an hour and a half. My head was getting fuzzy, it was getting hard to focus on my list. I had to lean on my cart because my legs were getting heavy and I was feeling out of breath. This all caught me by surprise since I hadn’t felt that way entering the store.



Then I looked at my watch and all was made clear. After 90 minutes, I run out of steam, for just about anything. I have developed such a habit of dissecting my days into 90-minute increments or less that … sometimes I forget that I really can’t last longer than that. It was time to drag home and be mindless for the rest of the afternoon.

I am healthy enough these days that I do tend to forget that I have limitations. And I know that most of the world to look at me would have no idea that there is anything amiss.

People may know that I visit my dad at the nursing home or babysit my grandchildren. They’ll see me in stores in my town, in a restaurant with a friend. They might see me driving a car or going for a walk.

And that’s why I write about it. Because whether it looks like it or not, for me and for the ME/CFS community around the globe, there is something wrong. And it’s important. And other people should know about it.

Because while we may look alright when/ if they see us, we’re not. Because while maybe there are things we can do — perhaps there’s lots of things we can do — we are constantly defined and restricted and molded by all the things we can’t do anymore.

I can’t drive to the city. I can’t fly on my own because what happens if my brain winks out mid-way? I can’t follow a conversation involving numbers to save my soul.

The other day I was talking with a young freelancer, about what is a good wage … and within minutes I had to terminate the conversation because the numbers were all jumbling in my head. I knew I had experience that would have been useful but I was helpless to be able to formulate or present it.

I can’t work in a store or a restaurant, both of which I have done in the past. I can’t commit anything to memory, I must write down everything if I don’t want to forget. I can’t carry on a philosophical debate for more than about 10 minutes before my grasp of the language and ability to enunciate my words begins to deteriorate.

For some reason I can write for long stretches. And I make use of this ability here, and anywhere else I can to draw attention to my community.

By nature I’m a pretty private person. Sometimes I look at what I share with the rest of the world and I am amazed at myself and what I’m putting out there.

But I never question why I do it. We are papering the Internet. For every one of us that can speak with our voice, we represent countless others who cannot. And we’ll keep doing it till all our invisible members are acknowledged and cared for.

How do you deal with planning for the future?

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Image by Vitali Kalasouski from Pixabay