There are questions that I often ask with no intention of trying to answer simply for matter of not having enough information. When I choose not to answer those questions, I choose to not be aware of the world around me. I choose to not know what it feels like in someone else’s shoes and heart. And I choose to not know whether or not my hands could lend aid.

I’m not entirely positive where this Awareness column will take us. What I do know is that we will take advantage of every opportunity to answer those questions we formerly had no intention of answering. What does it feel like? What is my stand? What is my role?

This first article is actually one of two that I will be running this week. They are both repeats from my personal blog and Lauren and I felt that they had a place in this Awareness column. They answer a question you may have that I know I can answer. What does it feel like when your body starts to fall apart and your spirit within is challenged?

Onward Through The Fog

Thank you for all your e-mails. I was quite surprised at how many of you had questions, and at the volume of questions some had. I have decided to only address some directly and to try to answer the rest in a more broad manner with detailed accounts. Feel free to ask any other questions that come up.

What is one question you hate being asked, and what is one question you wish people would ask?
I really like this one. There is one question that I feel uncomfortable being asked above all other questions and this usually comes after someone has seen me looking pretty poorly: “Do you feel better?”.

The answer is almost always no. The truth is that Multiple Sclerosis is a chronic condition, chronic meaning that it never goes away and that it is usually either not actively getting worse, or it is getting worse. It is rare that it gets better.

That’s just the nature of the disease and I don’t like the question because I feel like a real negative person when I say, “No, I don’t feel better”, so I usually just say that I am feeling better because it takes less time than explaining why I don’t.

Second only to that is when people suggest that I take a nap. I know that it seems obvious that a nap will rejuvenate someone who is tired, but again, it doesn’t get better.

A better question to ask, if you honestly want to gauge the current state of someone with a chronic illness is, “Is this a good day or a bad day?” That is a question I can answer because while it doesn’t get better, some days are better than others.

Before this question, I couldn’t have told you if there is a question I want people to ask, but I think the first part of this question is one of the best ones I have ever heard. There are some things I would rather people not ask and it is nice to be asked if certain questions bug me. Thank you, Susan, for the question.

Do you get tired of people asking you to do things that you don’t have energy for?
Another good question repeated by Ruth Ann and that Sarah asked me some time ago and has adapted beautifully to. The answer to this one is that I would like the opportunity to say, “Yes, I’d love to”, even if it’s only once in a great while. Please ask often and don’t be surprised or offended if the answer is usually no because I just may be up to it one day, and boy, I am a HOOT to hang out with.

I also have a very hard time making plans to do something in the future. I can’t commit to going to a movie tonight until it is tonight. I don’t know how my body is going to feel and I can’t guess because it is always different. Sometimes I say no to plans only because I feel bad having to back out at the last minute.

When I do choose to go out and do some activity, it is always at the expense of some other chore or parenting duty. I only have so much energy and something must always be left undone in order to spend energy doing something else.

Sarah wants to know how I keep my house so clean when I feel so worn out.
The answer to this is simple: I clean it.

My reality is one with very limited energy, so I prioritize what needs to be done in any given day. Number one is usually the kids and whatever they need. Number two is my home and keeping it tidy because I just can’t feel clear headed in a messy house. Eric is rarely home and requires very little attention as long as I am keeping up with the house and cooking, but I try to make sure he doesn’t get too far off my list. If he wants extra time from me, he usually tries to help with some of my other tasks to “buy” the time.

This means that anything else is extra. It is rare that I am able to do extra things like Ladies Bible Class, or play groups, or just fun outings, but this is my reality and it is one that I have adjusted to.

I can’t take complete credit for it always. My Mom popped in last week and detailed my kitchen for me. It is really hard for me to accept, and almost impossible for me to ask for, assistance. That is my own fault and it works to my benefit that the lady who bred that into me knew better and came to clean my kitchen.

(Thank you, Sarah, for the public clean house props.)

I think I can safely answer all other questions by simply telling you my M.S. story. When I was 17 years old I noticed that my left hand felt tingly and numb. This continued for a week until my right hand also became numb. After my right hand, things began progressing by the day instead of week. Two weeks after my Mom took me to the first doctor for a numb left hand I was in a state of functional quadriplegia. This meant that I could move my arms and legs to some degree, but they were useless to me for any function.

This became the body that I lived in for about a year as I went to physical therapy and took copious amounts of intravenous steroids. Anyone who has taken - or knows someone who has taken - steroids, knows that it wreaks havoc on one’s psyche. I had your regular teenaged angst made all the more volatile with the addition of mood altering drugs. I have decided in the last few years to never again use steroids.

My senior year began and I was able to return to school. I remember much of those first two years as more of an observer. I often felt like I was a tiny one inch version of myself rambling around in this giant, stupid body which refused to do my will. I was frustrated and eager to be taken seriously as something more than, “that girl who got so sick”.

My body recovered to some degree, but carried with it a residue from that first attack. I will discuss in a moment the exact nature of my current and, so far, lasting condition.

I was asked how I have gotten used to being in this body now. The answer is simply that I can’t. That has to be the most frustrating part. It is a maddening thing to feel like my personality is paralyzed by a body that won’t work properly. It is not something that I can get accustomed to, though I do feel like it is something I have developed a bit of a sense of humor about.

As I have aged with this diseased body, I think I have gained a certain perspective about how to at least live in it gracefully. I no longer feel compelled to feel guilty when backing out of prior arrangements. I always feel bad about putting people out when they must change their plans because I can’t keep up, but I do not feel guilt. I did not manifest this illness, therefore I cannot be held responsible for its limitations.

State of the Body Address
My current symptoms on a “good” day are the same as a “bad” day, with the exception that a bad day just seems like the symptoms get revved up. The last year has seen a bit more progression than I was prepared for, so I am still getting my bearings.

For the last twelve years I have had a sensation as though I am wearing a corset that is about two sizes too small. Some patients call this the “MS Hug”. Hug sounds more cheerful than it feels. In addition to the corset, it feels as though someone has placed quarter sized marbles along my lower ribcage that are embedded into my flesh by the pressure of the corset. On a bad day, this sensation makes me want to cry. Sometimes I do, but then I laugh at myself for being such a baby.

The pain along my lower ribs sometimes travels to my legs and causes a crushing sensation like one might expect from a wood press. My Dad has such devices in his workshop and it sometimes makes my legs hurt just to look at them. I really only experience this pain in an unbearable way if I have a fever, am over heated, am tired, or if I have walked too much.

I have a “restless leg” sensation that is also in my right arm. While I have heard people say they experience this only when resting, I find that I have it just about all the time. It makes walking frustrating and is worsened greatly when I am tired. I find that the physical frustration of this often make me feel mentally frustrated and impatient.

I have also felt all these years as though I were wearing socks laced with Icy Hot solution. My brothers know what that stuff is. My feet and legs up to my knees lack proper heat/cold sensation recognition and have a constant tingly, chemical burn like feel.

If you can imagine wearing a pair of rubber exam gloves under a pair of leather gardening gloves while trying to thread a needle, then I think you can imagine what my hands feel like. My fingers often twitch and appear to play an invisible piano if I am not watching them closely. This makes talking on the phone difficult some days because my fingers will disconnect the call if I am not ever mindful of their position. Concentrating on them complicates my efforts to stay focused on simple tasks and makes more intricate tasks daunting.

My eyes often hurt to move and my vision becomes darkened as though the sun has gone behind a cloud. I have several moments throughout the day when I see shadows, or movements out of my peripheral vision that are non existent, except in my damaged eyes.

I have often heard that one of the more frustrating parts of having a chronic illness like MS is that it remains virtually undetectable to the casual observer. I would have to agree that that is one of mine. While I am happy to be able to walk and function somewhat normally, I am likely to need a wheelchair for lengthy activities and it is tiring and a bit embarrassing to to feel as though I have to explain why when I look just fine. If I was missing a leg or deformed in some fashion, nobody would think a thing of me having the limits of a disabled person

I have gotten dirty looks for using store offered scooters when I have no obvious disability and I was even yelled at years ago by an elderly woman for taking the last handicap parking spot with what she was certain was my Grandma’s permit.

Sometimes I even have trouble convincing myself that there are certain things that I just can’t do. In fact, I think I just might be my hardest sell.

My Prognosis
Some of you wanted to know what the future holds for me physically. The easiest way to answer is to say, “I don’t know”. The more complicated answer is that, based on my current condition and the laws of averages, I will likely remain as I am with a slow degrade marked by periods of no change. I figure that in the next ten years or so I will stop wearing heels all together and I will eventually start wearing only shoes that aid proper walking. My personal unease with Velcro will likely be put aside in about 25-30 years and by the time I am 60, I’m okay to be perfectly content with elastic waist bands and tennis ball bling on my walker.

Perhaps by “prognosis”, you were asking if the disease is fatal. The truth is that it is quite rare for someone to actually die from MS, though it is not uncommon to die from MS related causes. In the less ambulatory, blot clots that lead to stroke or heart attack are common. In the bed bound, pneumonia that won’t heal is not unheard of.

My Grandmother, for example, did not die from Rheumatoid Arthritis. However, she died because she had R.A. Her hip replacements got infected which wouldn’t heal and led to her ultimate death.

They say that M.S. takes ten to twenty years off a person’s life expectancy. I think this number is just an average based on the fact that every case is very unique and different.

No doctor can tell me if I will suddenly get worse, if I will continue my slow progression
(and it is quite slow) or if I will stay in the same condition I am in right now forever. Personally, I like it better not knowing. I can accept the unknown easier than the known.

Next time I’ll tell you why, given the chance to never have this illness, I wouldn’t change a thing. (And why that doesn’t mean I wouldn’t mind kicking it to the curb.)

Categories: Awareness
Tags: chronic disease, health issues, M.S.