Although it is not time for me to post my yearly MS update, I felt the need to write a little more personal story about how my MS has affected not just my immediate family but also my relationships with extended family as well as friends (near and far).  And I want to be very clear that no two people have the same MS symptoms.  It is an unknown disease, regardless of how much money is thrown at the researchers.  There is no way to predict where the lesions may appear in the brain and hence, how it will affect the person who has lesions.  My symptoms are mine – and that is what this personal revelation is about.

I am broken.

This image signifies SO much of what I deal with on a daily basis – a crack in the “M”, which would be ME.  I am broken.  I am suffering daily.  Nothing thus far has helped with my MS symptoms.  Nothing has regained any of my facilities that brain lesions have destroyed.  Even some of the brain lesions still show up as great big white holes in my brain, on CT scans and MRIs.  No medications have helped stamp out my MS.

I am broken.

And when the wife is broken, the husband becomes the primary caretaker of not just his bride but also our children.  My husband works sunup to sundown taking care of the responsibilities that I used to at least share with him.  He is a trooper though he occasionally needs a break from his duties to regroup and come back rejuvenated.  He holds me up when I cannot walk.  He lotions my feet after a shower because I am too dizzy to do it myself.  He drives me to and from my medical appointments and helps me make sense of what the doctors are trying to tell me.  And he holds me when I am hurting (emotionally and/or physically), letting me know that we are in this MS fight as a team.

I am broken.

My children are the next in line for suffering through my MS.  I can no longer handle their chaos, noise and drama.  I am no longer the Mom they once knew.  They can tell me things and just a few moments later, I forget what they said.  They are distancing themselves from me because they do not like what MS has done to me…better to hang onto a positive (their dad) instead of a negative (me, their mom).  Each day, I lose a bit more of my former self and if the kids can find a way to get away from me, so they do not have to deal with it, they will do so.  The kids make fun of me quite a bit.  I know it is their way of trying to get a handle on their mom with MS, but it hurts my heart.

In the beginning of my MS journey, my husband and I agreed to keep the communication lines open with the kids.  What we knew, they knew.  We talked about the side effects and symptoms often with them.  At this point, we are thinking perhaps we gave them TOO MUCH information as they worry about me way more than any child should have to worry about their parent.

I am also unable to participate in many of their extracurricular and/or fun adventures.  This spring break week is a prime example – my husband is taking my kids to a state park for three days and two nights of backpacking and camping.  I cannot go.  I cannot hike the distances.  I can barely walk, most of the time…which means my husband would not only be carrying a 60 pound backpack, he would also have to help our youngest daughter (whose backpack is pretty heavy for a first-time backpacker) and then hold onto me so I could walk.  But, even just going to the store makes the pain in my feet pain-med worthy…so, backpacking just a half of a mile would mean I would be down for the count.

I am broken.

At this point in my journey, I have already failed four MS therapies/protocols.  From the most common drug to the strongest drug…none of them have helped me and have, in fact, made my MS symptoms worse.  I have been referred to a different neurologist (known as a MARC neurologist – MARC standing for Medical Arts & Research Center neurologist) and she has run a number of tests.  She is of the belief that I have something else wrong with me such as another autoimmune disease – something that would explain why the MS therapies have failed me.  Unfortunately, I cannot get in to see her again until April.  And her office refuses to fax us the results of the tests until she has a chance to go over them with us.

Next week, I see a neurotologist.  She specializes in dizziness, which has plagued me ever since diagnosis in late 2010.  Perhaps she will have some answers and give me relief from this most debilitating symptom.  Nothing my previous MS neurologist was able to do.  Yes, answers would be nice.

But, I am still broken.

The loneliness of MS is probably one of the top five repercussions of having this disease.  Since I do not do well in crowds, I am better off at home.  Going to our local quilt group, where I was totally in my element for four years before MS, is a thing of the past.  Even visiting with one or two friends is difficult for me.  I am unable to think as quickly as I used to and therefore, unable to articulate or even participate in a conversation/discussion.  Talking on the telephone falls in this category, too.  Extended family comes to my mother-in-law’s house…my husband and kids go up to spend time with them…and I have to stay home or else I would end up in the bed for a day or two.  I just cannot handle it anymore.

I am broken.

And what I am doing to my kids is foremost in my mind.  They deserve a ‘whole’ Mom.  They deserve more than they get from me.  They deserve to be kids.  And they deserve escape from the MS that has turned their mom into someone they do not recognize.  They deserve so much more than I am able to give.

I am broken.