Perhaps a very down, depressed version of myself.
But I’m here. Highs and lows.
Fears and hopes.
Writing but not sharing
Planning trips, journeys, and home renovations.
Excited and anxious.
Alone and surrounded.
Focused on distracting myself.

I’m slowly starting the Walhs protocol again

because nothing says “get your act together” like seeing your daughter cry out of concern for you. So I’m slowly going to say good bye to dairy, sugar, and grains. Oh bread, how I will miss you. But I reserve the right to have cake on my birthday and stray from the protocol while on vacations.
Speaking of vacations. 2 planned, 1 in the works, and if all goes well Portugal for my birthday. And hopefully Iceland at some point. No idea when. Too much going on right now… but if anyone wants to help me go to Iceland (with the kids) then let me know. I figured I could give Dean a week off. He needs a break and video game time is almost down to zero hours a month. That’s just insane!

I’m still in the process of getting an accessible bathroom and laundry room done in the basement. I think we (well a lovely kind determined designer) finally figured out how to make it all fit inside a tiny space and the contractor has okay’ed it.

So work will probably start after the Christmas holidays. January will surely suck. (cause of the construction and I imagine the dog will bark the entire time, and you know…the freaken weather)

And this week I have started researching and contacting home elevator companies so I can access every level of my house again. My daughters reaction “nooooooooo!” (She hates elevators, she keeps thinking she’ll get stuck in one). And my son’s reaction “COOOL! We will have the coolest house”. His reaction is making the process a little easier for me to digest.

I’ve been … let’s say fragile these days. I really didn’t think the deterioration of my body would progress this fast…or at all really. My ego is taking a beating. I don’t know what to think, what to plan for. Part of me knows I need to mourn, because this sucks. This is hard. This is something anyone would have a reaction to I would think. I can’t imagine anyone waking up unable to move their right hand and be like “ladida, no biggy” and go on with their day. Right?
But I also have to stay strong for my kids. I don’t know how to do both simultaneously. The more I try to hold back tears the more they want to come out. Perhaps January should be spent in an accessible condo/Airbnb downtown with Leo. But then who will take care of the kids. (Dean travels lots for work)

And occasionally I work on my book but I’ve decided to push back any talk of release till after all the trips I have planned. In the hopes I get some pictures worth including in there. But for now I’m touching up my favorites. And I’ve dropped off over 200 35mm negatives to be scanned. So my favorites are of the highest quality.

So in conclusion, Ms sucks, planning home renovations sucks the joy out of renovating your home, very excited about upcoming trips, very depressed about winter and MS, puppy is cute, kids are good, Dean is busy, I need to win the lotto.

Another full on crying frenzy

I’ve been having a lot of those lately. I’ve broken down down in front of friends, family, neighbors, and even strangers. I can not talk about what is happening without tearing up. I am trying to stand, I am trying to keep a smile on my face and to stay positive but it’s much easier said then done when you are basically being kicked when you’re down. Having a progressive disease is very hard to adapt too. Something new keeps popping up. It’s like every day is the worst I have ever felt yet probably the best I’ll ever feel ever again. It’s a mind fuck. I often think if I were to switch bodies with someone for a day I would hit the ceiling, and they would crumble to the ground and probably call an ambulance.

I hurt my right hand today, smashed it into the library while trying to squeeze by a tight corridor with my wheelchair. Also I can barely lift my right hand today (was like that before I smashed it). And I’m planning to go to a camera shop tomorrow to switch some lenses since some are getting too heavy to lift. If you know me, then you know that not being able to hold up my camera is heartbreaking. Yet I try to smile through it all. I can, as long as you don’t ask me about it.

In good news I’ve come to grips that I must sell my car. Well I guess I could keep it and just never use but it makes for a very large and burdensome paperweight. So sell I shall. Now I just have to come to terms with using wheelchair accessible taxis…hold on, need a tissue….

K

I focus mostly on my legs, but I have lots of other symptoms. They’re just embarrassing at times, less obvious, or personal.

I catch myself laughing out loud and crying at the same time. It feels like such a bad joke you can’t help but laugh at how ridiculous this disease is. I’ve tried MS support groups but it’s too much, too scary, too depressing. I can’t help feel like I don’t belong. Everyone there does. It’s not a fun party.

I’ve tried therapy but can’t help disregarding what they say because they just don’t know. They can’t know how this is, how hard it is to lift yourself up when it’s the perfect excuse to lay down. You’re sick?! You should rest. You have Ms, fight through it.

My son will be home soon. Happy face time!

Everything will be alright. You are strong. You can do this. You are woman. You’ve pushed 2 babies out, you can handle this.