One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.
When I am unable to join in on the outings, parties, dinners and trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.
The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave those choices up to me and are okay with what I choose. After all, it’s my body, it’s my life. I should know how I’m feeling.
Sometimes I do need that tough love push…but most of the time I don’t. I push myself harder than anyone else could anyway. Most of the time I need someone to tell me it’s okay to stop pushing so hard, to give myself a break and simply be.
Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.
Living with MS can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care. No agenda…just be there.
When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending you a virtual hug…from me to you today.