Spontaneity. It may just happen. The words given to a couple unable to conceive a baby using all means within their financial, emotional and physical power.

Spontaneity and just letting things happen is not how am I trying to live my life with MS.

So now what?

I'm feeling a bit useless and damaged. But don't worry - I got out of bed, I washed the dishes in the sink, and I'm writing this blog. I just need to reach a final point of acceptance...of something.

Wishing a baby to just happen while on Rebif is not recommended. So is it time to get back on the DMD track, accepting that being pregnant will never be in my cards? Or is it time to lay off all drugs, DMD and fertility and see what happens? Back to square one, just like five years ago, but this time I do have MS.

It was made clear to Jason and I yesterday that my insides are a "hostile environment". Recent medical oopses...oops, did I say that, I meant to say recent unfortunate medical events have resulted in extensive internal scaring. Not to mention endometriosis, have made motherhood the old fashioned way next to impossible.

I have to make a choice. Time is not on my side. Though I am not "old", any time waited is time past in reproductive years - decreasing the odds of successful "other methods" of conceiving. And as far as I am concerned, time is not on my side with MS either. At the drop of a hat, things can change or maybe just as time goes by...things can progress.

When I was waiting to start my DMD 3 1/2 years ago, I likened it to standing in the middle of a busy intersection, unprotected. For myself, I believe in the DMDs.

While I may have the inclination to take it as it comes for many things, I can't be this way with MS.

Emily

Now: when I tilt my head back to drain a can of pop...I can do it.

Then: I couldn't finish a can because if I tipped my head back, I got the wobbles.

This is just something on my mind these days.

Emily

Before now, I have never been afraid of catching the flu or a cold. I'm not going to tell you that I'm afraid of H1N1. People die every year from flu and flu complications...

I am concerned with the ease of transmission of this virus - because I don't want to get sick. I don't need anything else taking away my energy. My energy is precious. When I'm dragging, I feel useless.

Sure, we all feel that way. But I feel drained of energy everyday. I don't need the flu, or a bad cold making it worse.

Emily

Do you remember in the spring, how my MS Walk Team sold fabulous lip balm, soap, and lotion, all handmade by a special friend of mine? From what we sold, we donated approximately $500 to MS.

Well - I'm doing it again, just in time for Christmas!

This time, to make ordering easier, all you need to do is visit my Etsy shop. The goodies are laid out there for you to make your selections. Soap, candles, lip balm, whipped soap, and buttercream lotion - in rich scents, including some special ones for the holidays!

You can purchase individual items, and there are some package deals as well. These items make great stocking stuffers, Secret Santa gifts, super special gifts for super special people...or just something for yourself.

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Whew - I committed to something for six weeks - early Wednesday mornings, and I did it. Some days, I did not want to be there: I was just too tired. Other days, I slept for the rest of the day...and even the day after.

I'm not sure that I learned anything NEW, but it was a good refresher of some common sense things.

I know to preserve my steps. I know that not for fatigue, but for the wobbles.

I know that there is such a thing called Secondary Fatigue: fatigue brought on by medications, stress, physiological conditions and a few other things. I'm not on any new medications, and I try to limit my stress.

I know to keep my body compact when working/moving. But, I still need to move my Mini Wheats down from the top shelf, and if I ever have to make the bed, I will raise my knee up and rest it on the bed.

Schedules can be good things. Schedules help to give you a sense of purpose, as well as allow you opportunities to rest. When making a schedule, plan your rest FIRST. Jason and I need to make a house cleaning schedule.

Fatigue is unpredictable - we all expressed to our Occupational Therapist that no matter how good it sounds to "BANK" energy, there isn't always a guarantee that it will be available when you call upon it. That being said, to plan a day of go-go-go is silly...schedule rests. The gist of it is to not over-do it. And...don't wait to rest. If you are slipping, put your work/play/conversation away, and rest.

Communication is important, including communicating to those close to you what your fatigue is like. Choose your time to share carefully: be in a good place yourself, and make sure that your audience is interested and also in a good place. Communicating helps you and your friends/family/co-workers to be comfortable and supportive. And in the end, not everyone will understand.

The goal of the workshop was to give us strategies. I think it was a success. Can't wait for the cognition workshop!

Emily

Since the beginning of my new reality, I have had random body twitches. Finally, they are reaching a frequency that I find concerning. All I can think about, is that I need to get back on my DMD (Rebif)...maybe it will make a difference. Did stopping my Rebif allow this to happen sooner rather than later? If I stayed on the Rebif, would it have not happened at all?

At first, the twitches were few and far between, not even a weekly occurrence. We joked that they were my "tell" in a poker game. I mostly had a shoulder twitch when I was stressed. Now, the twitches encompass more of my body, and I think, are more noticeable. They sure are to me!

I can be lying in bed, trying to fall asleep, and my leg jumps. Nike the cat, doesn't like this so much, as it disturbs her blankets. I can be talking with Jason, and my shoulder-upper chest-head area will jerk. It isn't a tremor - it's an all out movement: out of position and back again. The freakiest time is when it is my entire body - lying in bed, and I do the worm...or a body wave.

I don't know if there is anything I can do about it. When I first started with Dr E., my MS specific neurologist, I asked him if the twitches were caused by the MS . His response was non-committal. This was my way of telling him about the issue: I had already addressed it with my first neurologist, who wasn't in to treating symptoms, but rather seeing what symptoms would arise. My GP is supposed to be my primary care provider, even for MS, BUT, as he as told me before, he doesn't know enough about the disease. So, I'll wait another year, and take it up with Dr.E when I see him next.

Emily

Our workshop is starting to become repetitive. Instead of planning a day, we are planning a week for ourselves. The idea is to "bank" energy. Banking, to me, means leaving it tucked away for use in the future.

But, I have quickly learned in my short time with MS, this isn't always possible. It doesn't work that way: if fatigue is going to get you, it will. Don't get me wrong, the workshop has been beneficial in that I have met women like myself, and it has provided us with some strategies for doing tasks to use the least amount of energy. But if I could see "the wall" (fatigue) coming, I would get out of the way...trust me. If energy could be "banked" then fatigue would hardly be the issue that it is.

The workshop has also reminded us to not fill our time with "have to's": it is important to have some "would like to's" in our day/week. A lack of "would like to's" is depressing.

Other stuff...

In our workshop yesterday, we talked a bit about things that we have given up, or stopped doing because of our fatigue. It felt good to hear someone with the same "give up" as me. Sad, but nice to know that I'm not alone.

Over the past three years, it has been common place for me to leave my house without going to great lengths to "perk-up" my appearance. I've never been one for much make-up, but now I wear none, if any at all. I prefer my hair straight, but now a fuzzy ponytail is about all I can muster.

And for the most part, I'm okay with it. By the time I am out of the shower, I have used my arms enough. And to spend time in front of a mirror before tackling the great outdoors, that is a waste of energy.

What's the point of having sparkly eyelids and pink lips if you are slouched, watery eyed, and dragging your feet?

Emily