Friday, December 17, 2010

Glitter in the Moonlight

It's the holiday season; I'm not supposed to feel blech. It's not allowed, right?

For many years, big holidays such as Christmas have been difficult for me. Part of that is due to seasonal affective disorder and some is due to various disappointments over the years. I dread this time of year.

Yesterday I had a 4-month follow-up appointment at the neurology center. It was fairly uneventful, however I did learn that I really can't feel my left foot. When my neuro NP bent my big toe and asked which direction it was, I honestly couldn't tell. At first it felt like she was moving it side-ways, not up nor down.

The numbness in my legs is up my torso. I could barely feel the safety pin which I understand is 'supposed' to feel sharp. LOL. It was kinda, sorta sharpish near my bra strap. It's time to admit that this extent of numbness is permanent.

The swaying and balance issues are permanent. After testing the same during several visits over more than a year, it's time to accept that my appointments are not coincidentally on "bad days." This is just my new normal and adjusted baseline.

I asked about vision issues, wondering if visual disturbances ever really get better. We're going to repeat the visual evoked potentials test in January and compare the result to my original ones over five years ago. My optic discs look good upon exam, and my MRI brain scans look good, but it is most likely that there is damage somewhere behind the eyes along the optic nerve.

After asking about MS bowel issues, it is confirmed that a case of MS doesn't have to be really advanced before bowels can be affected. It is not the most common symptom, but definitely one which can be annoying and disturbing.

So to be honest with myself and readers, I really am doing rather well. I function; I look good; I can walk, talk, hear, see, think, write, teach, and smile. But when adding up all the mild and moderate symptoms, it becomes rather annoying. It is impossible to ignore that MS puts limits on what I can do.

Maybe it's really just the season. Maybe it's that spasticity has come back and causes pain. Maybe it's that I have my final pulse steroid session on Monday and I won't be getting a boost until I actually have a significant relapse or something else happens in the future.

I'm kinda looking forward to the steroids (as odd as that sounds) so that my growing joint pain will subside before I'm traveling for a week. The spasticity will probably be subdued and maybe my eyes will brighten up.

Basically I think I'm traveling through some of the typical emotions of anger and grief before acceptance can be regained again. Interesting that once we find acceptance, it doesn't guarantee we'll always feel that way.

I know that compared to many of my online friends, I am doing fantastic!! I am awesome. There is no reason to feel blah and blech. Already I feel a little bit better compared to yesterday. Tomorrow I will probably feel better still.

One thing I learned during a few years of counseling is that it is important to acknowledge feelings and allow yourself to feel them. This is helpful in taking away their disruptive power. By admitting that I feel blah, I help myself overcome it and find more peace and joy.

Maybe that is what I should focus on this week, helping myself find peace and joy within. It is not something which is limited to one day or season of the year. It is always there, within, to be nurtured and allowed to breathe.

So my wish for you this holiday season is to find the peace and joy which comes from within. Not from lights or trees, poinsettia plants or even red roses. You are your own angel. May your wings glitter in the moonlight.


  1. Interesting you should post this. My poem for tomorrow is about finding the inner stillness. We're in agreement.

  2. Many people feel as you do during the holiday season. All the fa-la-la and merry this and joyous that is bantied about brings no comfort to those of us who are just making it through the day, as short as it is this time of year.

    Even as we feel the dysthymia, there are parts of the celebrations we do enjoy. Relish those, and surrender to the rest, just as you have to surrender to the MS and RA. Now go pet your kitty.

  3. Yes I do understand the blahs, during these seasons?? I always try to find that peace within! Love your honest post.

  4. I found your observation that a case of MS does not have to be advanced for certain symptoms to kick in intriguing. I guess because in the two decades of living with MS in our family, Patti's has always been that way. You made me pause and think that for many there probably is a belief, hope, something that symptoms progress somehow sequentially from less complicated to worse. Yet because Patti's have progressed so randomly, perspective has a whole lot to do with acceptance and anger.

    Caregivingly Yours, Patrick

  5. Judy, great timing on the poem. Very apropos. Inner stillness can be rare sometimes. :)

    Webster, my kitties have been getting lots of extra pets (when they will slow down for them, lol). It's been brutally cold recently and that makes it feel as though this winter is going to be a looooonnnnnggg one. In only a few days, those days will be getting longer though. Must remember that.

    Kim, thank you! Definitely the inner stillness is something which must be sought and cultivated often. I felt like writing 'something' but this is what came out. Honesty is important. :)

    Thanks, ladies!!

  6. Patrick, I had believed that there didn't have to be a set progression to how symptoms developed. But my new GI doctor was insistent that only really advanced cases of MS experienced neurogenic bowel issues. Then he jumped to examples such as impaction, not simple slowed motility that I was asking about.

    So I had to ask my neurologist for clarification. It's important to me to really understand these things so that I don't spout off inaccuracies on the web.

    It's kinda of like an ad which has been appearing online for the past few months using a wheelchair as something to avoid by taking DMDs. The concept would be confusing and insulting to those MSers who started their journey with a wheelchair.

    Lesions don't know that they're not supposed to touch certain abilities until their lesion friends have had a chance to do their things. :) Some generalizations may be true, such as vision issues commonly being an early symptom, but that's a little different.

    I have an online MS friend who was diagnosed in her 20s. Her initial attack effected her rectal tone. She had to take care of business manually for awhile and her case is definitely not advanced.

    Like my neuro said on Thursday, "MS is a crappy disease."

  7. excellent. I agree wholeheartedly. I have days when I feel bleh, but I think sometimes it is important to experience the anger and other emotions. I mean, based on your comment about how you are fantastic compared to some of the others online, if that is the case, I must be better than fantastic. Some days I am. Others, not so much.
    If you look around, you can always find others who have it much worse. Then again, you can find others that have it better as well.
    I really like that cartoon that was posted on someone's blog featured in your carnival - that seems to apply as well.
    This time of year, depression is common. Add stress. Add various diseases/ailments and you are asking for trouble.
    Hang in there. And yes, pet the pussies. They have a wonderful way of making us smile/laugh and relax just watching their antics, and I don't know about yours, but mine can sense when something is wrong, or I'm not feeling the greatest. Ziggy our tiger is the love-bug, he will cuddle up next to you and keep you company, as if to say, "hey, it can't be all bad, come on, rub my belly...."