Living Well With MS & Disabilities: Ellie's Blog

On my last blog which was under MS I talked about being in an MS relapse and what I was experiencing physically as well as emotionally. Well I'm now out of it. And it was short relapse!  Which pleases me no end (my new medicine is working).

I blog under two categories MS and then Disability.  I hope that many of you go to both of them which you can do by just using Ellie. I have MS separately because I have MS and I think it's my personal experience and concerns that I want to share and talk about. I also blog about Disability. I do this because I have a personal concern for all people with disabilities which comes in part as I am a physical therapist who worked with people with disabilities for many years.  And now with MS I am also a person who has disabilities as do other people who have MS.

If you didn't read my last blog which was under MS take a look  I talked about what was happening when I had a relapse. I started with my cognitive loss and fatigue then moved on to the physical loss that I experienced over a period of 2 weeks. During this time issues of ways to compensate for cognitive loss,fatigue and physical loss became important to me. I have become a pro at compensating for fatigue. You rest more!  And I also take a Provigil and drink too much caffeine.  And this is when I usually start meditating again.

The physical part is relatively easy also as I have all of the assistive devices at my disposal. Wheelchair,walker, cane etc..  And I have learned over the years to use them when I need them. No heroics here!  I've tried that!!

So when I see people limping or lurching or even not going out because they can't walk that far it makes me just want to scream!  Being a physical therapist I know that using your body improperly when walking can lead to secondary problems. And letting yourself lose out on life by being stuck in your home because you won't or can't afford the right assistive device is wrong. To be honest I also have had times that I did not want to admit that I needed an assistive device so I do understand the emotional aspect.

But it is really so detrimental to your physical body and your life itself. Why is it that nobody talks about respecting your body and what it's needs are for the physical task you going to perform?

When I was working as a physical therapist whenever the Olympics were on I would be reminded of this.  And tell my patients how even though they weren't athletes their exercise and walking program and what they were doing was an equivalent.  And when you see these Olympics Stars using the best equipment possible so they can use their body to the greatest advantage performing the skilled event you have to question why can't it be the same for a person who has a disability! Why wouldn't it be just expected that they would have and be using the right assistant device so they too can use their body in the best way possible , even if it's just walking across the room !

Do we have our priorities upside down here?  Would we tell these Olympians who choose to use more advanced equipment that would help their bodies perform at a higher level that their giving up or cheating.  No way! And closer to home when I played tennis I chose the best racquet for myself as did most other people I knew.

But do we give the disabled who choose to use an assistive device so they're not lurching or limping or exhausting themselves and preventing future secondary problems the same respect for their judgment?  Or do we think that they must be giving up or cheating by not trying harder? It's odd that we even think they must be getting old if their past a certain age. You don't use an assistive device like a cane because your old. Even if a person is 90 they would use a cane or other assistive device for a physical reason. 

So I propose that we all make an effort to salute and support these people who are respecting their bodies and trying to live their life to the fullest!  And the hell with what other people think. Let's help them get over the fact that it's a negative. Because it is not! It's a positive act!!!

If you have a condition that effects your walking ability that's life. And your life will be much easier when you admit to yourself that that's the way it is. Then you can move on and do what you can to assist yourself to living your life to the fullest. You go get the best assistive device possible to compensate for what your body is no longer capable of doing.  And in the process you will be preventing secondary problems that could be occurring by using your body improperly. You will be respecting your body!  

We didn't do that with polio patients and they now have secondary effects that if we had a different policy things might be different for them now.  But it doesn't have to happen again.  We have the knowledge and also better equipment if we can afford it and the outside world is more available to us thanks to the ADA.

So let's get out there people proudly and feisty with our  walkers, canes,crutches and wheelchairs as appropriate and live!

See you out there!   Ellie

Last Sunday morning I woke up and staggered to the bathroom and went past the clothes all laid out on the dining room table. I thought oh boy where am I going this morning?  Oh yes I remembered Church.  It was late but I grabbed a cup of coffee and tried to wake up and  clear the fog.  But it did not work.  So I crawled back into bed.

Later that day I felt better so I decided to get up and try to finish what I wanted to finish in January as this was the 31st.  I needed to put up the Christmas pictures on face book.  These were something I really wanted to share.

So I opened up my picture file and face book.  Needless to say my foggy brain wasn't very cooperative. It seemed to me that they had changed how you put pictures up!  So after some frustrating attempts I called on my younger son who helped me a bit through my problem with my neural fibers in my brain in slow mode.

And we did put up a couple of pictures with proper identification of them. I also wanted  identification of everyone in the picture of my niece Gale's Christmas Family Dinner.  But when I looked at the picture it seemed to me it had shrunk and was so blurry that to identify people was out of the question.  And to be honest at that point I was so tired I could hardly remember my own name. So when my son said," Let me finish this up for you mom and you can add to it tomorrow or the next day". I gratefully took him up on the offer,

I swear everybody is getting faster and smarter and I'm getting slower and slower and dumber and dumber! At least that is how I felt then. So as that was my big event of the day I crashed early and had a long sleep.

The next morning when I woke up and walked to the kitchen to get my cup of coffee-- 10 steps was it.  So I sat on the seat of my walker and pushed myself backwards to my wheelchair. Then I went into the kitchen and  poured my coffee. Well this feels like relapse I thought and too tired to get angry or finish my coffee I crawled back into bed. 

The next day when I got up I wasn't better- now I was angry!  A week ago I was using my cane for short distances. I had started back walking outside with my wheeled walker. I was able to go 2/3 of the way around my short block. Inside the house I was mostly walking with no assist with a few wall touches here and there unless I needed to carry things that were heavy or awkward.  And I wasn't as tired !!!

I was making plans to go to the theatre, movies, out to dinner.  We were also discussing that we might do a coffee hour at church. Damn! Damn! Damn!

It just doesn't seem fair. It seems I spend more time in a relapse than I do in remission!  Of course I did have a lousy cold when I was in my remission which might have triggered the relapse. However, I didn't make myself get a cold.

I thought when I made my box for the Haiti Relief  I was going to have a problem finding reasons to put money in  that related to my being upset about MS .  Not so, that  box is starting to fill up real fast with IOUs.

Oh I know, I'm 74 and I should be mature as I know this is what happens with MS.  But you know my age and the fact that this has happened many many many times  doesn't make it any easier. Disappointment is disappointment. And yes I always get better, that knowledge helps, but it still takes too damn long to get better.

But then I look at the Haiti box I made and sighing I think putting things into perspective I'm still dam lucky. I'll get better! I have a great family. I can rest when it's is needed, I have the right equipment, good medicine,and good doctors.

I'm not saying all this is OK it's not!! But it is what it is. And it could be so much worse as it would be if I was in Haiti or I was a person who didn't have a good support system, good healthcare, or a nice home to be crashing in.

When I wake up tomorrow morning I'm going to spend  time looking at the shelf near the bottom of my bed.  Then start my day meditating on that prayer which my son made, framed and gave to me. Then I'll go online and find the relief agency list that helps the disabled in Haiti and send some money.

Grant me the Serenity to accept what cannot be changed

The Courage to change what can be changed

And the Wisdom to know the difference

                                               Be well, ellie