I don’t know doesn’t mean NO

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.

26 thoughts on “I don’t know doesn’t mean NO

  1. I completely get it. I can never say yes to any plans, it’s always ‘well, Dad will come’ and ‘it depends’ or ‘I don’t know how I’ll be’ but the mere fact of a planned event where people are hoping I will attend increases the pressure on me to be well which is guaranteed to result in me not being well! It’s horrible. The more I want to atttend or participate, the more pain I’m in and the more likely it will be that I have to miss out. The harder I try, the less I can do. And then it looks like I didn’t try. (I don’t have MS but a longterm back injury).

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  2. I love this post – it’s really honest and forthright. Thank you!
    My spiritual teacher often says that I don’t know can be a great answer. Like if we don’t know, just say so!

    Thanks for a great post. Sending you blessings. Love the love on your blog,

    Liked by 1 person

  3. Sorry to hear about your struggles and admire your honesty. If people don’t know, they can’t adjust. I don’t have your health situation but I know I prefer tons of alone time. So I say No, or I don’t know, or I’ll get back to you, much more often than I say yes. If my friends or other’s don’t understand, I let that go. That is on them. Being true to myself always adds energy and support to myself which ultimately makes me happier and stronger. The looking In the freezer when you meant to look somewhere else happens all the time to me. Again, I have no illness (well, that I know of). If I don’t have enough food in my belly or sleep or that much needed alone time then it’s even worse. I can’t make heads or tails of ordinary tasks. Either fortunately or unfortunately, your most loving friends and family will reveal themselves. Thinking of you!!!!

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  4. I love this post mainly because I relate 100% but also because you are out here being vulnerable and that in itself isn’t an easy thing to do! I sometimes wake up in the morning with full intentions to meet my friends for lunch or take a walk and then 10 am rolls around and I just don’t have the energy anymore. It is so damn frustrating but I know that I’m going to try again tomorrow or maybe even in a couple of hours, you just never know! Makes planning things super difficult but it is now my new normal and luckily my friends and family get it which helps me not to feel quite so guilty.

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  5. Hey Shannon, just came across your blog by accident but glad I did. My sister has MS and this is so true about how a person in that situation can feel one way about something one day and feel entirely different the next and it’s not about being awkward. She is my idol, the strongest person I know but she has her bad days and bad moments. But the struggles she faces day in and day out are nothing I could ever comprehend. A wonderful blog that is close to my heart. Followed and look forward to reading your posts x

    Liked by 1 person

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