A Type-A Mind With A Type MS Body

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.

Driving Legs

Sorry that I haven’t written in a while. But this is my Place where I write my observations, troubles, triumphs and concerns related to me living with MS. There haven’t been a lot of those lately. That’s a good thing!

Still, I have a few followers and I want you all to feel free to comment and share your opinions and thoughts. I also invite anyone who is writing an MS related blog to send me a link at chroniclesofnani@gmail.com so I can add the link here. If you don’t have a blog to share but you do have a personal story or information you’d like to share as a guest logger, please email me your post copy and I’ll post it. The most important thing is we, or someone we love, share this disease for which there is no cure, yet. Scientists and doctors are working on new an even better ways of treating multiple sclerosis. Perhaps someday there will be a cure. In the mean time we all have to live with MS as best we can. For me, writing and sharing is one of the many ways I deal with it, one of the ways I keep the negativity away so I can continue to be happy and be the best me I can, even if that awesome me doesn’t really walk anymore!

My husband and I went on an all-day drive photographing trains and barns and enjoying the sunshine! Great source of vitamin D, you know, so keeping the sun roof open was a must! When we do day trips we bring the wheelchair.

There are a few reasons we bring the wheelchair instead of the walker. The first is speed. I am terribly slow with the walker. If we’re out in the country areas and I ask for a “pit stop” it may be a while before we get back into a town where we can find a rest room. Just imagine, ya gotta go and you stumble slowly with a walker. Hmm… The other choice is your Hubby brings around your chair and he pushes you right up to the ladies room door. See the advantage? I’ll wheel back into the store or restaurant we stopped at, but when seconds count… Okay, it's more like when avoiding sudden stumble when you’re concentrating on “other muscles.” But you see what I mean. I’m sure many of you deal with the shortened tolerance time between the urge and emergency.

Next is we usually eat at least one meal in a restaurant rather than carry-out. It really is my preference to use the wheelchair for restaurants. I don’t even want to imagine the horror of stumbling into someone’s table while they’re enjoying a meal, let alone that I can’t keep up with a host person showing us to our table.

But honestly, the most important reason the wheelchair is better for day trips is that after we’ve been in the car for a couple of hours, my legs become very cramped up and spastic. At home I stand and stretch my back and legs about every half hour. We wouldn’t get very far if we stopped every half hour when we travel. The wheelchair means I can pull myself up and stretch enough to relieve any spasticity before I get in the chair. Then the grab bars in the handicap restrooms are not only good for balance and transferring, but I’ll grab them to do a few serious stretches before I go back to the car.

The cramping and spasticity are my riding trouble. Driving is a rougher issue! I wouldn’t ever drive for two hours, I can’t. I discovered just how much work the hamstring muscles do pushing the pedals and moving between them. After about an hour, my right hamstring is very sore! Where the cramps and spasms as a passenger need a good stretch, my leg needs to just rest, be elevated and rest if I’ve driven more than an hour. My Physical Therapist has officially suggested hand controls for my car. If the passenger time is an indication, I’ll, be able to drive a couple hours and take a stretch stop. I know the hand control kit is free with a new car, but to add it to my existing car is a decent expense. I’m going to see if our insurance would cover part of it if I have a prescription.

So, anyone else have any driving/riding difficulties? Do you travel? What things do you do to make traveling more comfortable?