Most days are good but some days are not. I’m overwhelmed with fatigue today. With wanting to do more. With having all the good intentions to meet up with friends and clients. But on those not so good days, I just can’t. I literally canNOT. And it’s so incredibly difficult to explain why I can’t, why I’m so fucking tired. Most just can’t understand because I don’t “look” sick. For people to believe you are not well you have to be dismembered, have blood gushing out of your eyes and ears and look like the read deal zombie apocalypse. So yeah, I don’t look sick!
Most days I just go about like it (MS) is (my new) normal. It is NOT normal. There is nothing normal about MS. But today I’m angry that my life isn’t how it used to be. That I can no longer run full speed. That I can’t wear certain shoes because i physically can’t walk in them like I used to. Man, I remember running in Jimmy Choo’s, YES, RUNNING. Nope, not anymore. That I sometimes can’t have a night out like an adult because my day of work and physical therapy that I have to do completely wipes me out. I’m only 38 not 68. My 66 year old mother is able to more than me. That chronic fatigue feels like being under a heavy wet thick ass blanket that you can’t get from under. That people will have pity for me when I can’t do something. That I will miss out on life, and opportunities, and moments and people because I can’t physically do something.
And I’m scared that if i just ignore my fatigue and push through like I used to that I’ll have a relapse and be sick for months on end. And not be able to walk because I’ve lost mobility, or see because the optic nerve which controls your eyesight is a part of your nervous system, or feel a kiss on the cheek or be able to tell someone I love them because my speech is slurred. That while I‘ll be able to carry my own child during pregnancy, that I physically won’t be able to hold them at a certain point, and won’t be able to run around with them and have the energy to be the active mom I’d like to be. The scariest moment was not being able to move my body and not KNOWING when or IF it would move again. So yeah, I’m gonna sit my ass down somewhere before I push myself to do anything even though I don’t WANT to.
I’m scared that being a chronically ill person makes me an undesirable life partner. Yeah, I look nice and you can’t tell that I have trouble walking or that I need help with certain things. That I have to remind people that I need help because I don’t look sick. That i feel like I can’t ask for help and the only people I feel comfortable asking are 3,000 miles away.
The other day i dreamt that my landlord insisted on getting me a wheelchair to go up and down the stairs in my home when I was adamant that I did not, and do not need one in IRL. The fact that he didn’t take no for an answer made start crying in my dream. For the first time ever, I woke up from my dream actually sobbing. It was s terrifying feeling.
I mean I’m thankful I’m in remission but I’m angry as fuck that MS has been the thief of joy and time and created this space where the word “can’t” lives. I swear tomorrow will be better, but FUCKKKKK… I sometimes just want my old life and body back!
