I am sick and I am scared.

When one of my children is doing something that annoys the other, I tell them “just ignore it and they’ll stop”. I have been using this reasoning with MS as well. I’m trying desperately to ignore it. And the worst I feel the more I dream. I search travel spots, I make dinner plans, I get a dog!, I plan for an MS free future. I feel both in denial and hopeful. My upbeat attitude can appear to some as “I’m doing better” and I guess in some aspects I am. I’m no longer letting MS (argh…hate those letters…back to pickles) I am no longer letting pickles stop me from dreaming, from making plans. And that is good, that is better. 

But the truth of my health is I am not doing better. I am getting worst. I’m just ignoring it even though I am reminded with every step I take. My legs are stiff, so stiff. The spasms are more frequent, my balance is completely off. And the fatigue is constant. CONSTANT. It never goes away, it just gets worst. I know it is there, all I can do is nap. And I don’t talk about it because then I am no longer ignoring it. But it is there. It is the big fat elephant in the room. And I’m just hoping it doesn’t crush me.

I feel like I need to mention this again to my friends, although I’ve said it in person (I hope I did), but it should be in writing as well. Thank you for travelling with me. Thank you so much. Thank you for lifting the dam wheelchair for me, making it seem like it wasn’t a pain in the ass. Thank you for carrying it up stairs, thank you for helping me in & out of the pool, thank you for carrying things for me when you saw I was having a hard time. Thank you for making spots that would of been inaccessible to me, accessible. Thank you for your patience. Thank you for taking the stress of researching areas for accessibility away from me. A weight was lifted and  it made it possible for me to save my energy for travel. For discovery. 

One of you told me you didn’t realize just how constant my disease, my symptoms were. It is there every day, with every step, the struggle and fatigue constant. Every place I go I have to worry about accessibility. It is overwhelming for me. It makes me hide out so I don’t have to worry about it. It never stops. I was both relieved that someone understood, and scared that it would  push you away. That it would become overwhelming for you as well. Travelling with me, around town or abroad, is not easy. 

I wouldn’t of been able to do this trip without you. I may not have been as integrated as you thought I would of been. But I was, fully integrated, in my own way. 

I don’t know how many more trips I’ll be able to do, and if this was the last, I am so happy I made this one with both of you. The wonderful memories of roaming sheep, the sound of waves, the beautiful landscapes, the great company, the window shopping, the blue skies, the starry nights, will stay with me forever.

Thank you