Making the Move: Mal de Debarquement Syndrome Takes a Couple Cross-Country

May 29, 2013

It’s coming up on us so soon now…the move my wife and I decided, 11 months ago, to work toward. And now, here it is, not even two months away. A date has been decided on, reservations have been made and, little by little, our home is becoming a whole new work in progress (storage and packing facility, makeshift eating, sleeping and working quarters and soon-to-be moving sale/thrift shop) as we inch toward the goal that we are so hoping will improve my wife’s quality of life.

It’s rather daunting, at the moment, to be facing a move from the house where we have lived for eight years and (for me) from the state where I’ve lived the better part of 48 years. Moving is, of course, a major chore and life transition for anybody. But having moved a fair number of times in my life (though never away from the West), I became quite adept at it. Too adept, perhaps! And given my history of moving, one would think making another move would not be that big of a deal for me/us. However, chronic illness has changed this for me.

Not only is my wife dealing with ongoing and severe Fibromyalgia and Chronic Fatigue Syndrome, but I too have been drastically affected by a condition that began on a cruise in January of 2011. This condition is a rare and still-rather-poorly-understood balance disorder called Mal de Debarquement Syndrome (MdDS) that has continuously interrupted my life now, in varying degrees, for almost 28 straight months.

My wife, with her illness, is not able to do much, but she helps toward actualizing the move, in her own way, when she can. And I, being her caregiver, as well as coping with my own condition, am not able to do much (compared to what I used to do) towards expediting our move. In spite of my best efforts, I’ve found myself able to do only a fraction of what I used to do…both in stamina and ability. I get tired rather quickly, I have come close to falling, trying to weave my way through the tight spaces that are created by this kind of transition, and I simply have no idea how we’re going to make this move become a reality.

Now why, you might ask, would a couple dealing with chronic illness be committing to such an undertaking? Since before I got sick, we’ve both had a dream of eventually moving to a place that might “feed our souls,” a place where we both feel like we could thrive. We had no idea where that place might be…until we took a trip to the mountains of North Carolina a bit over a year ago and fell in love with a whole new landscape.

We also found out, three years ago, that my wife has heavy metal poisoning, one of the metals being uranium. Uranium also happens to be rampant in this part of the Southwest. Was this finally the answer to why she became so sick when she moved here? We still don’t know for sure, but we are holding out hope that getting away from the uranium will lead to some degree of improvement in her health. As for my condition, too little is known to speculate whether the move will help me at all. So far where I go seems to make little difference in how I feel, except for the fact that both travel and stress (both of which necessarily exist in making a move) exacerbate my symptoms.

So how WILL we pull this off? We are pulling it off…very slowly and with a LOT of help. I’m having to learn my limitations, where, before MdDS, I could go full speed ahead all day long. I could get up on roofs to fix things, I could climb ladders to bring things down from the rafters, I could carry big and heavy things up and down stairways, and little stopped me. Now, I get tired after just a few hours of working and often need to recharge for a long night (or even a few days) before I can get back to work. I’m having to learn (against everything that my “don’t need help” mentality says) to ask for help– a lot of it.

I don’t know what tomorrow will bring. Maybe I’ll pack one box, maybe I’ll be able to get something done, but maybe I won’t. No more (for now, anyway) can I go to bed at midnight and get up at five in the morning for a workout, breakfast and then off to work. Yes, I miss my old abilities, and yes, I often still over-extend myself (I’m still learning how to “do” this new normal). Yes, I come way too close to falling and hurting myself when I forget to be careful. And yes, I am gradually, one day at a time, getting a little bit better about asking for help when I need it. And yes, we will make this move happen. Will it really happen, as planned, in six weeks? I don’t know for sure. All I know is that we are making progress. And sometimes (not very often, but sometimes), I am okay and accept the way it is for now.

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