Month: <span>December 2010</span>

It’s an odd thing I sometimes consider. (Trust me, I’m not crazy) – but once or twice a year I wonder, what if the neurologists are wrong? What if my wife doesn’t have Multiple Sclerosis? What if she has something that looks like MS but isn’t as bad?

I know it’s wishful thinking. And I know why I wonder. I so want her MS to be something else – something that has a cure. Something that isn’t “progressive” (and isn’t that such a sadly ironic word for a disease).

When I first start to wonder, I find it easy to feel hopeful. MS is one of those odd diseases that seems to take forever to diagnose. It took a lot of visits to doctors and a lot of tests to get a firm diagnosis. The diagnostic process sets one up for doubt.

On the other hand, take a normal health problem.

If you break a bone, you usually remember exactly how it happened. You go to the ER and the doctor looks at your arm and says, “looks like you’ve broken your arm.” Or maybe the diagnosis requires an X-ray. The doctor pops it on the light board, looks at it and says, “yep, look here, you’ve broken your arm, here’s a cast, you’ll heal just fine.”

MS is so unlike that.

When we were told the diagnosis, I told the doctor, “I don’t think that’s it. What else could it be?

It was a desperate question. “What else could it be?” At the time, I was aware of only one person who had MS. He had been in a wheelchair for years.

Even now, ten years later, I still find myself asking, what else could it be? And after a decade of asking, I see the symptoms, I re-read the lab reports, and I know the truth. It’s MS.

I’ve not talked to anyone about this wishful thinking because it seems irrational. I have a logical mind. I have the evidence and it’s conclusive. Yet some part of me hangs on to the impossible chance that after a visit to her neurologist, the doctor will report with a smile, “Wait, we’ve been wrong! It’s not MS! It’s disease X, Y or Z and it has a cure!”

In case you’ve wondered – and I imagine there are MS caregivers who find themselves wondering as I occasionally do – I’ll share a link to an article on diagnosing Multiple Sclerosis and how other diseases are ruled out through something called differential diagnosis. It serves as a useful anchor to medical reality for me.

Accessing the article requires that you register for a free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology“. You will be prompted to login or register. The article is “MAKING THE DIAGNOSIS OF MULTIPLE SCLEROSIS” by Dr. J. Palace.

When you find yourself wondering about the diagnosis, you have a few options:

1) You can ignore the wondering. However, if you do, it will always be there in the back of your mind. It’s better to address it.

2) You can always talk with the doctor and ask her or him to walk you through the diagnostic information again.

3) And finally, if you already have the irrefutable evidence and just wonder as I occasionally do, call it what it is: wishful thinking. Everyone is entitled to a little wishful thinking every once in a while.

However, avoid letting your wishful thinking distract you from reality. Reality is where you must live, move and have your being. MS is what it is. You’re a caregiver, so take good care.

(As an aside, if you’re interested in reading about research into MS, the free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology” is a great deal. The journal articles and study results are excellent.)

Caring for Yourself MS Caregiving MS Diagnosis MS Research

Driving past a neighbor’s last week I saw him and his wife setting up Christmas decorations in their yard. The lights around the edge of the house had been put in place the week before. These decorations were the large figures that sit on the ground and are lit up at night.

Later that evening as I drove by again I saw their yard with the lights on and it was all that they should be – festive, pretty, and exciting for children. He and his wife decorated their yard together.

As I pulled into my driveway and looked at my house without Christmas lights or yard ornaments, the little voice that tries to help me feel better about what I’m unable to accomplish whispered, “you cannot do everything.”

And after several years, I have grown to accept that there are things that I must do alone if they are going to be done. There’s not a lot of joy in hanging Christmas decorations alone in the yard – so I don’t.

But my neighbor’s festive lights turned on a little Christmas melancholy for me.

A few days ago my wife remembered aloud that when our daughters were small she took them to the mall and pushed them through the Christmas-shopping crowds in their stroller. She looked forward to Christmas shopping with them when they were teens – three females having fun laughing through the mall together. That she can’t do with our girls what she once looked forward to doing now casts a shade of Christmas melancholy.

For many reasons, Christmas is the holiday that has the reputation of being an emotional minefield. Elvis sang, “Blue Christmas”, about the sadness of Christmas without a loved one. Newspapers often run a December article about holiday depression. The shorter days and less sunlight are related to Seasonal Affective Disorder aka S.A.D. (Has there ever been a less hopeful name for an emotional disorder?) SAD is a form of depression caused by seasonal changes and seems to be related to loss of sunshine.

Christmas is at the year’s end when most of us are looking back and evaluating the previous 12 months. If we’ve not accomplished what we intended we may feel regret. More powerfully, if we’ve lost a loved one, the holiday season is a time of remembering and consequently, sadness.

For many multiple sclerosis caregivers, Christmas seems an unnecessary complication.

Comfortable routines are changed because of festivities. In addition to the usual full load of making life happen well, additional responsibilities arise like decorating, preparing for parties, buying presents, wrapping presents, scheduling visits with family so that no one is neglected, cooking, finding money for presents. And of course, one has to have a good time doing all of this or they’re being a Scrooge!

If I ever do hide in the woods and become a hermit, Christmas is the holiday that will force it!

A friend has a two-word phrase he uses for times like this, “man cave”. He has one and he uses it.

What To Do When You Want to Hide in the Woods

You know as well as I do, MS caregivers cannot become hermits or hide in caves. So what’s a caregiver to do about holiday chaos? I’ll share what works for me.

1. Have reasonable expectations. Don’t expect your family to sing “The Hallelujah Chorus” together on Christmas morning if none of you can carry a tune. Don’t expect everyone to be happy with the present you give them. In fact, be reasonable! Expect that someone will not be pleased. When it happens, you’re prepared. If it doesn’t, you get the pleasant surprise.

Don’t expect a “perfect” anything. It’s not going to happen. The holidays are about people who are all imperfect.

2. Make certain you have holiday time for yourself. This one is difficult. It will feel selfish, but the only way you can be fully present for another is if you are fully present for yourself. You can only give another the parts of yourself that are available. If you do not occasionally find time to recreate your sense of self during the holidays, you’ll miss yourself and others will too!

3. Acknowledge emotions. You cannot avoid them. All of the anniversaries of life that occur each year tie us to the past. The holidays are an annual celebration with ties to previous years. You’ll remember family who are no longer with you, friends from whom you are separated, plans that have not been accomplished. All of these are real and present. Acknowledge the emotions you have about them. Emotional energy spent trying to avoid remembering can be better spent facing the memories and being thankful that loved ones and friends from the past were a part of who you have become.

4. Focus. Make choices about what is important. If you’ve ever used an old 35mm SLR camera which had depth-of-field preview focusing with a fast lens, you’ll quickly understand the image. Only certain things can truly be “in focus”. Everything outside of the field of focus is blurry. The photographer chooses what in the scene will be perfectly in focus. All else will be present, but out of focus.

As a caregiver, choose what you wish to focus on during the holidays. Everything else will be there, but at any given time, you can choose what you will make the object of your focus.

5. Remember the historically spiritual nature of the holiday season. Spirituality is, of course, a personal matter. So contemplate the meaning and value this season has held for you in the past.

In the middle of any current chaos, most of us have a bedrock of faith we rest upon – more or less. For me it is this, “‘Behold! The virgin will conceive in her womb and will bear a son, and they will call His name Emmanuel’ (which translated is, God with us).” I cannot explain what ‘God with us’ means because the experience lies deep on the bedrock of my faith in the realm of the ineffable.

But without doubt, I know the experience is real. When I’m running around trying to keep up the family traditions and do all that’s required to make sure all gets done, I know hidden beneath the chaos, there is one truth: Emmanuel, God with us.

Caring for Yourself MS Caregiving Practical Tips

Readers of the Multiple Sclerosis Caregiving blog make comments that can usually be separated into just a few subjects related to caregiving: 1) shock at an MS diagnosis, 2) concern about the future and worry about how difficult caregiving will be, 3) questions about a particular aspect of caregiving, and 4) support for another reader.

I wrote in my initial post, I’m an MS Caregiver, “My goal for this blog is that it become a helpful resource for other MS Caregivers. I hope you can use what I share to improve your own life. And in making the caregiving lifestyle easier for you, I believe it will be easier for you to be more helpful to the one for whom you care.”

That fourth subject, “support for another reader”, is the one that has become a very pleasant surprise. That MS Caregivers spontaneously help each other, share insights and tips, and offer emotional support to each other has become the part of this blog I enjoy the most. Thanks for helping other MS Caregivers!

Caring for Yourself MS Caregiving Reasons for Hope