Wheelchair Archive

31

MS Milestones

broken computer

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

MS Sucks

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

32

Twists and Turns

A long road

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

39

Make It Work

My family takes a week long cruise every two years during Thanksgiving. I myself have gone three times in the past but never with my husband and certainly never in my present state. So it was the first time for both of us in many ways. He has never been on a cruise of any kind. I have never been since my diagnosis has tainted me physically. So, it was bitter sweet.

For my husband I could understand the 10 years it took him to finally agree to join us. First off, it is basically all my friends and family. That means most importantly his in-laws including his father-in-law (my father). Secondly, to make matters worse, my poor hubby was sea sick the majority of the cruise. Remember, it was a SEVEN-day voyage. I should have known it was going to be rough for him because he can barely stomach flying!

As for me, it was challenging viewing a world I use to be an active part of. Many of the activities offered on board that interested me really didn’t accommodate me. Also they only offered two wheelchair accessible excursions at the three ports of call we stopped at.

Still it was nice to be catered to. It was welcoming to be surrounded by family. It was great that for once hubby wasn’t totally responsible for the cooking and cleaning. Also we still participated in many activities despite the accommodation hurdles.

It was scary yet invigorating to step out of my comfort zone and to revisit an old pastime yet in a different way. Because of my fatigue it was exhausting trying to keep up with everyone else…but I did. We did!

I’m so proud we made it work and had a good time.

34

Immune Compromised

Finally, I got a new non-multiple sclerosis endeavor to talk about! Well sort of…you’ll see.

My husband and I are trying to buy a new home! Yes and I naively thought banks and/or credit unions would have a separate grant program for people with disabilities. Especially, since our income is drastically less than it was pre-diagnosis. But no, they don’t. I guess the best answer is to earn as much as you can before joining the disability club. Also, make sure you get long-term healthcare insurance through your employer while you’re eligible.

I thought that in accordance with the Americans with Disabilities Act, financial institutions would make certain accommodations. Meaning lower interest rates for people living with disabilities, but I quickly figured out they don’t. Besides the financial issues, I’ve also found myself weighing options I haven’t considered in a long time. Surprisingly, it was quite welcoming. I’m pondering things like, what’s more important, having a bigger living area or larger bedroom? Let me tell ya, I’d much rather make those decisions than what disease modifying drug to pick. I must admit, having MS has taught me not to sweat the mundane issues. Past hardships don’t seem so problematic anymore because I’m becoming immune to worrying.

But I’m still not completely enlightened yet. As it turns out, the home I really want is out of our financial reach. When will I just be satisfied with what I have or in this case, can afford? But that’s the human condition. That’s the reason for the whole stock market crash, right? I always want more. Be it walking or scooting around. I never quit. I remember a time when all I wanted was a scooter. Now, I have it, but I keep busting my butt trying to use my walker. It’s so ironic that I’m drooling over square footage that I can’t even walk?

The next day, as we were leaving to meet with our realtor the phone rang. It was my doctor. Apparently Gilenya, the pill I take for MS, is doing a serious hacking on my white blood count and my doctor wants me to go to the emergency room if I get a fever, feel lightheaded or dizzy. A low white blood cell count means your immune system is suppressed. This leaves me open to getting sick really easy. The plan is to let my counts rise again and start on the other new MS pill. He said it has just been released and is safer than Gilenya, but it’s not as affective. Ultimately, it might also lower my white blood cell count! Great! (I’m being sarcastic)

Nevertheless, I pulled it together met with my realtor and put in a bid on a new condo.

See we just got to keep moving forward with or without an immune system.

30

Sex, Intimacy, and MS

Sex has been on my mind for a while now. So I figured I’ve blogged about urine and bowel issues, why not follow up with sex????? Natural transition, right? No not at all. Don’t worry; I’m not actually going to talk about the act of sex. I’m going to focus on how MS has affected my capacity for sexual feelings or my sexiness to be clear.

At first, I was just so spastic. My legs wouldn’t cooperate. Now that I have muscle relaxants, I’m a tad bit more limber but I don’t feel desirable. After all, my husband helps me with things one normally wouldn’t want any man to be present for, much less help out. I know I’m blessed to have him around but honestly how much of this can we take? I always harp on the activities Multiple Sclerosis has stolen from me but I forgot to mention my sex life. That part of me is somewhere between my walker, wheelchair, scooter and shower bench!

I just don’t have the energy to get “cute”. You know to go the extra mile from presentable to attractive. I think people don’t really look at me that way in a wheelchair. It stinks not being at eye level. I try to shake things up and actually dress like a 37-year woman. We also try to live that way too. Well, as much as we can. I know there are things my husband loves to do together that I just can’t do anymore.

Most mornings all I can do is simply get dressed. Makeup has been a casualty of this war and high heels are impossible for me to wear. I do pride myself on weekly visits to the beauty salon. I get my hair styled and a pedicure with hubby waiting patiently by my side. It’s funny, because I want to at least try to be seductive. But sometimes even with the hair and nails complete, I don’t feel like the diva I think I used to be. I do my best not to take him for granted. I wear dresses and cute sandals as often as I can but my shape is not where it was before this despicable disease. I remember him telling me my legs were his favorite body part of mine. I wonder what it is now? It’s surely not these wobbly stumps I have today.

But despite all of my MS faults, my husband still tells me how nice I look. Now, I just need to convince myself.

That’s the hard part.

17

Fighting Envy

 

I think one of the facets of multiple sclerosis that has whacked me the hardest is the amount of dependency it thrusts upon me. So now, when I discover outlets that allow me to exercise independence, I am elated!

Last weekend was the first time I have gone to my local park and used my scooter all the way around the jogging track. It was early and cool, so heat and humidity was not a problem. It took my husband and I an hour to finish the entire path, but I felt better for having taken on the challenge of being amongst the healthy in this feeble body of mine. That is obviously the core reason I haven’t been to the park in a long time. Well, that and of course the heat factor. I’ve come to realize there are ways around my limitations if I just show initiative and a little grit.

I was on my scooter but I was still able to convince myself that if I held my stomach in, sat up straight and tried to squeeze my rear end tightly, I was somehow working my core strength. I hope it was an accurate assessment. But nevertheless, I took a huge step in the right direction. I enjoy being outside at the park. I even enjoy being in the company of the walker/runners.

I still may resent them a little bit, but I’m working on that.

We were at the park in the first place for a laughter yoga class, but when I failed to see the group we just kept on going around the track. To be honest I surprised myself. I had no intention of taking on the track in my scooter. Who goes on a track with a scooter? It really sounds pretty silly to me. Unbeknownst to me, my yoga class must have been cancelled because I certainly didn’t see them out there. But I’m glad I didn’t stop looking for a gang of silly people laughing for no reason. Laughter yoga is another little simple pleasure I enjoy, similar to the way we meet here to exchange ideas and best practices.

I can’t help adding that often my husband invites me out to the park to join him for a trip around the track. For some reason he seems to like for me to come along wheelchair or not. But for me, in the past the entire event has left me a bit down. You know because I use to run. I think I told you once I went and saw the group of guys that I used to proudly jog with. It hurt to see them. I was even a bit jealous. I even selfishly told my husband I just couldn’t go anymore. He of course soon stopped going as well. Which made me feel like crap. I had just taken away his bit of respite from caring for me 24 hours a day. You’d think he could just go alone. Except, to make matters worse I shared with him I was kind of scared to be left in the apartment by myself. He can’t win!

But this weekend was different. We both went and I feel like I won a little piece of “us” back.

19

Higher Ground

HURRICANE EVACUATIONS in Louisiana are in place! So sorry, we won’t be able to post this week since we live in New Orleans, which is below sea level. As much as I love this historic city I’m gonna have to leave and flee for my life! I’m being serious but a little dramatic.

When these type of things happen I usually leave early because it is so hard for me to pack. Not only do I need normal things like clothes and my toothbrush but I have to make sure I have all of my medicines, my walker and my scooter. I really hate this because the stress plays havoc with my MS.

But if all things go smoothly, which they probably won’t, we’ll be back up and running by next Tuesday. For now I’m packing and praying!

So I will talk to you guys next week and hopefully all will be ok in New Orleans.