Tuesday, February 25, 2014

Corn Chowder

Today someone told me, in the course of conversation, that I should make homemade corn chowder.  I responded that I didn't have the time.  The person responded that we all have the same amount of time, and then the person wondered why I didn't have time to make corn chowder.  I told the person they should follow me around for a day. And I'll stop there.  Really?  Do people really think this way??

We do all have the same amount of time each day and we each somewhat decide how we want to spend it.  If I could spend time any way I wanted and didn't have MS,  I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict.  Before that, I'd be a wife and mom...  that doesn't change.  I don't really enjoy cooking although I enjoy hearing how other people cook.

Suppose I did want to make corn chowder.  I would now be at the store getting ingredients instead of writing this blog. It's cold out there!  I would assemble my wheelchair, go get the ingredients, etc.  Then I'd get home and have to figure a way to get them inside.  Because fatigue is a major problem for me, this series of things would totally wipe me out.  It's better to be home writing the blog, and then take a break to walk.  If I went to the store, there would be no walking and I would have huge leg spasms all night.

I forgot - I'd need to know how to make corn chowder!  Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients.  That would be tiring too.  It's between 4 and 7.  That's the most tiring time for me.  At 8pm my body wants to take a nap.  So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.

Another day I'd make the corn chowder.  Because my shoulder is never going to be ok again, it would be hard to put everything together.  The action of pouring things hurts my shoulder a lot.  And I would be tired.  I would have to cancel a walking session and I value those.  And really, cooking is not my thing.  It's not worth the effort for me.

In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive!  What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me.  I don't want a sympathy party.  I do wish people would understand just a bit, that everything is different for me than for someone without MS.

Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following...  Every morning I sit on the edge of my bed wondering if I will be able to stand.  Assuming I can stand, I then do a short series of physical therapy exercises.  I have coffee, take a shower, etc.  It takes me longer to do all of this.  I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm.  I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on.  And it hard to explain this without someone watching, but things take me longer than someone without MS.  At 10pm I do more physical therapy exercises and then go to bed.  At least once during the night I get up to walk because I get severe leg spasms.  My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up...  if my legs work. And this is an average day.  During the day while at work I get up every hour to walk.  Many people think I do this to stretch.  I walk during the day to work on walking.  Today I walked a lot more because my legs wanted to have spasms.  Walking is the only thing that really helps spasms.  I can be very tired, but my legs may spasm, and I have to walk.  MS can be like that.  MS can simultaneously tell a person they are tired, and that they need to get up and walk.

I write all of this so someone out there who doesn't understand, may understand.  Even if I look great, I may be really tired.

And I write these entries in a way to "educate" people.  You don't see everything.  You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair.  And for many people who use wheelchairs, they may not have fatigue.  But everyone who uses a wheelchair is different, so some people may be more tired than others.  I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.

And no matter what, maybe someone else can make me some homemade corn chowder.  I don't think I ever will, at least not for a long time.  Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.


Sunday, February 16, 2014

21 years

February 11 has come and gone, but I did go through that day thinking of how it was the day I was diagnosed with MS, after 3 years of tests, and really, 3 years of me wondering if my mind was playing tricks on me.  Maybe nothing was really wrong.  But when I found out, someone said to me, "isn't it good, in a way, to know what is wrong?"  Yes.  I wasn't making things up.

Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids.  Then I would get better, but I would never reach the point from before the relapse.  I was one of the very first people on Betaseron.  Then it didn't seem to be working, so I was one of the first people on Copaxone.  It helped slow down MS in some ways.  5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that.  Looking back, stopping that really caused MS attacks to increase in frequency.  Sometimes I would get them every three months.  So then I tried Avonex and Rebif for "fun."  Each are shots I got to give myself and were accompanied by other not so fun symptoms...

But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.

And then came Ampyra, right when I thought nothing else would help.  And it's not supposed to help.  But it has.  The every 4-6 month attacks have been gone for 3.5 years.  I am walking, much more than ever.  It's not supposed to work this well.  But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.

What is hard these days is that in my environment, people don't know where I've been.  My walking doesn't look like a real walk, but it keeps getting better.  People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point.  People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.

I guess the point of this post is to summarize where I have been...  Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way.  If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.

Smile.  Life is good.  Push the boundaries.  Break all the rules.  Never give up.  Ever.

Thanks be to God.