I find that my writing here is sporadic because either it’s sunny or it’s raining. The last few months have been rainy ones in my mind. I am by my nature an optimist, which really helps in living with my unwelcome guest for life but being an optimist also means I have my limits with negativity before I walk away. I can’t walk away from MS. Okay, truth is I can’t walk away from anything, I roll away. That last line was a joke; I’m not that far in the muck.
Since the beginning of August I’ve been frustrated with things I’d planned to have done this year that I could see weren’t going to be anywhere near “goal met.” By the end of August I was supposed to have the cleaning and organizing done in the house. I could see in the beginning of August that I had barely scratched anything. I had to accept that I can’t do the lifting, the moving, even the bending and sorting make me tired and I need a break after a while. I can’t be the “Type A” person I once was; I won’t ever be her again, not physically.
The thing is I AM still her mentally. I just haven’t caught up with the physical limitations in my expectations of myself. I realize that I have to sit in the kitchen to cook or do dishes and mentally I fight with myself because “I have a chair in the kitchen, isn’t that enough?" Well, no, it’s not enough. Stretching my arms to move things on the counter makes them sore and reaching up and into the sink makes my back tired. I will get a taller chair for the kitchen, that will help my arms not get as sore, but I’m finally realizing that won’t make it easy, just easier. I’ll accomplish things slower than I used to, some things a lot slower, some things not without help. Do you know how hard it is for someone who is mentally still type-A to ask for help? I’m not talking delegating a task that’s part of a project; I mean ask for help because it’s something simple that I can’t do. I have absolutely no problem accepting help when it’s offered, but asking for help? That's still a big change for me.
So now, a year after what I thought was the worst of dealing with Primary Progressive Multiple Sclerosis ended, the months of progression without the drugs that have fixed my two symptoms that agonized me the most; fatigue and brain fog, I have to take some time to reassess how I'm coping and what’s next. I know that I desperately want a power chair and a van with hand controls. I can’t drive a regular vehicle anymore and my arms just can’t even dream of getting me to a bus stop to use public transportation. I wouldn’t have the ability to do anything one I got somewhere anyway, when my hands/arms get tired I can’t even make the wheels of my chair move. I’d need the van because there is no way a power chair can get into our house; the point is getting me out of the house anyway. The biggest reason I want the power chair/van is so I can find a job. I so desperately want to work again, contribute to the household and pay my own way, have things I want again.
This isn’t all doom and gloom! Researching my goals has helped me keep my sanity. I actually have a meeting next week to be okayed for the public transportation program for the disabled who can’t board regular buses. A ride is twice the cost of a regular bus, but they come to your door and drop you off at the location you’re going to. I’m still working on the logistics of getting the wheelchair in and out of the house. I’ll see next week how much the service entails. This service would enable me to get to my doctor’s appointments without having to work around my husband’s work schedule. It will also enable me to go to the Bureau of Vocational Rehabilitation so I can get myself ready to work again! A job is a way to save up for the copay on the power chair and credit to get a loan and make payments on a van. Then I start to get some of my freedom back. And I accept that that freedom won’t mean I can go out and play a round of mini golf, but I will be able to go to Starbucks on my own and go in to have a have a latte.
I'm really getting more information and tryng to be more of a self-actvist, so I think I'll be posting more now.
I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.
I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!
If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!