Okay, so I've decided to stop the amantadine.  I haven't notice much of an improvement in energy levels.  While I only took one (instead of the maximum 2) per day, I wasn't willing to take more due to the possible side-effects.  I already was experiencing lack of sleep at night and didn't want to increase that at all.

It's been two days since I've been off of the meds.  Yesterday I was doing okay and even made it church for the first time in months, but noticed a slight increase in numbness/sensation in my fingers and feet.  Today, it's greatly increased to the point that it feels like someone is taking a hammer to my fingers.  Yes, quite painful.  Hurts to type, hurts to hold a knife to cut up food, pretty much anything. The electrical sensations are having a 'heyday'.  Also, nausea has kicked in full-time.  Fun. Time to do some research.  Here is what I came up with when stopping amantadine:

Neuroleptic malignant syndrome, involuntary muscle contractions, coma, stupor, hypokinesia, hypertonia, gait abnormalities, paresthesia, EEG changes, and tremor have been reported during postmarketing experience. Agitation, hallucinations, stupor, and slurred speech have also occurred after abrupt discontinuation.

 Thankfully, I haven't noticed any of the post side effects other than the increased paresethesia (sensation of tingling, pricking, or numbness), but at least I can safely "guess" that is why it's kicked up a notch all of a sudden. I am hoping that in a few days that pain will decrease.   Now, if hallucinations start making me believe that I'm in Hawaii on the beach, I think I'll just run with that one.

Such a struggle to find joy amidst pain, to find the willingness to tell your body to get up and move.  I so long for healing .. for the possibility to enjoy my family, to participate with them.  Take them for walks in a forest, go bike riding with them, chase them around the house. God, hold me while I cannot do all that is so dear to my heart.  Help me to find ways to be a part of these great "little kid" years. I don't want to miss it all because of a disease.

Ok, I'm beginning to wonder if perhaps someone is slipping sleeping pills into my water.  For the past few weeks it seems I have been consistently getting more and more sleepy.  There are times, however, in my day where I do feel like I have a little energy to do things, but it is short-lived.  I feel constantly exhausted.  My body doesn't want to do anything. The simple act of taking the kids to the park almost feels like running a marathon.  One step at a time.  Take is slow. Don't think about tomorrow (too depressing).  Focus on now.  Count your blessings.   Try not to think about your losses and at all costs don't "wish" you could do what others are doing .. that is a guaranteed recipe for failure (feeling sorry for what I can no longer do).

Life feels very long.  When you take so many things that you enjoy out of the picture, it creates a searching for something else to replace your hobby or the thing that gives you life.  I am a very physical person.  That being taken away, I am stuck in a place trying to find out what gives me joy, fills up my 'gas tank', etc.  I find myself stuck, always reverting to thoughts such as "I like tennis, ballet, jogging, shoveling snow (my favorite!), hiking .. ".  Hmm.. how to find things that are not physical.  Any suggestions?  Knitting? uh no.  Chess?  (with MS brain fog? big resounding NO).   I will have to continue searching.

I also would like to find my place in how I can serve others.  I feel so stuck in a place of weakness, that I'm unable to do things such as cook meals for others (something I used to do) or find other ways to bless others.  Frankly, I feel like a big sponge in society.  While I am grateful for all that I receive, I do want to give back too.

Just a few meandering thoughts.  My pain is very minimal right now, which I'm thankful for.  The amantadine (for energy) doesn't seem to be working, so I may have to double dose it as suggested.  Really not wanting to do that.   I did just down a Starbucks Doubleshot Espresso & Cream coffee drink I purchased yesterday.  Thought it might give me a KICK to jumpstart my housecleaning (as we have guests coming over tonight).   While in a perfect world I could take up drinking that as my new "hobby", I'm sure my body wouldn't appreciate ingesting that on a regular basis.  Mmmm

Okay, off to do some dishes by hand (our dishwasher is broken  ARGH)

On day 4 of Amantadine.  It's supposed to help with energy levels.  I think it *might* be working as I have been able to stay out of bed the last few days, albeit with some effort.   I really hate taking drugs, but if my life will consist of staying in bed all the time, I don't see what other option I have.

Still dealing with emotional issues which make my perspective on life a bit more dark.  Finding myself at times suppressing my emotional side so that I don't have to deal with it.  I'm really at a loss as to how to look at heart issues without cracking under the pain of it.  I haven't been able to figure it out over the past year, so I'm not too optimistic that I'll figure it out any time soon.  I hope that I can .. because it makes life feel very long.

Pain levels are pretty low right now, just the internal toxic feeling which hasn't really gone away over the past few weeks. Numbness is still all there and going strong.  Fatigue is still strong and it's a constant battle with fighting depression about where my body and life is going.

Finally got my parking permit this week, so at least I can park close to a store's door on days when I feel all I can do is crawl from one place to the next.

Started a new (oral) medication which is supposed to help with energy levels. Will see how that goes.

I remember a day when I had joy.  I remember a time when I had hope.   Lately, I feel lost.  I understand the concept that I'm the clay being formed by the potter.  However, the process is long and very difficult.  What about the verse that says the joy of the Lord is your strength?  I must be missing something.  Where is the joy .. and the strength?  I keep plugging along. It's not like I have a choice.   If I did, I would choose health.  I am not adept at fighting.  I am weak and frail.  The fatigue - insurmountable.  I know the Holy Spirit intercedes for you.. but does He fight for you?  I hope so.

I ran across this poem today.  Feels like it was written just for me.