Often when asked to go somewhere or do something my reply is I don’t know, we’ll see, or I’m not going to commit to anything. Not too long ago it was followed with an explanation of why I might not be able to. Maybe the explanation was some what for myself so I didn’t feel as guilty for letting someone down but it was more so because I thought that if I explained they could understand. Understand why I do or maybe in some cases don’t do things.
I quit explaining because I realized it was falling on deaf ears. The truth of it is no matter how much I explain they can’t understand. It took being cut off and the subject changed immediately before I could even finish what I was saying or being met with rolling eyes ( as if to say here she goes again) to realize this. I can see where it probably seems or seemed to them as if I was feeling sorry for myself or complaining. That couldn’t be further from the truth.
So now I just say I don’t know. I thought that would make it easier. That hasn’t been the case. Lately when I say I don’t know I’m met with but maybe right or at least try. In one particular conversation I was asked if I wanted to go somewhere the night before an outing that was already planned. I said maybe that’s not a good idea since we have plans the next night. This persons reply was but it’s the night before! I get it. It seems crazy. I should be fine right. It’s a whole day before. Unfortunately that’s not my world. I have to consider these things.
There is more to consider than what is visible. You may see me limping and having trouble walking every day. You think oh big deal that’s every day and you would be right to an extent. That is my every day. I have become used to that. What you don’t see is how much I struggle on the mental and cognitive side of it. I don’t talk about it much because quite honestly it is what hurts the most. I feel more and more like I’m losing myself. I’m losing the ability to express myself the way I used to. Often I can’t formulate my thoughts or find words. I can’t keep up with conversations. These symptoms are stronger when in situations or places that are unfamiliar. Where there are large crowds, loud noises, and a lot of lights. To you maybe you feel I should just suck it up to be a part of things but the truth of it is when all this is going on I’m not a part of things.
Please remember there is nothing I want more than to be the old me. I want to be like you and say when asked to do things. That’s sounds like fun. I would love to. Of course I’ll go. I want to be the old me that knew that in a week I could go. That the likely hood of backing out was slim to none. That’s just not the way it works. I don’t know how I’m going to feel Saturday, tomorrow, or even two hours from now.
If you are close to someone living with a chronic illness try not to read more into it than what it is. Don’t assume that we don’t want to, that we’re not trying, or that we like it this way. I assure you that there is nothing we want more than to do things with the people we love.
We are coping with the constant changes of our disease the best that we can. We are adapting the best we can. Part of that adapting is learning that we can’t do and be everything everyone would like us to and that we have to do what is best for us.
Try putting yourself in our shoes for a moment. Ask yourself how you would answer or how you would handle the situation if you were faced with the same hand we have been dealt.
I don’t know doesn’t mean NO! It simply means what it implies at this time I don’t know.