WARNING:   This update is not for the faint of heart ... I'm hoping my next update will be more encouraging and positive.. This one; however, is giving a window into my life at this moment, with no candy-coating.  I don't want to offend with my negativity .. yet I need to be real.   I still look forward to a brighter day ...


It has been nearly four months since I have posted an update.  Normally, I also keep a private 'health log' for my own personal records of how I fair each day.  There are no logged personal records for the past few months either.  Frankly, I have not been well enough to do much other than focus on keeping my kids fed and somehow remembering to pay the bills before the power gets turned off in the home (although once it was close!).

In the beginning (July 2012), the weekly Avonex injections weren't too difficult, I would feel flu-like symptoms for the first 3-4 days, which I felt was par for the course as my body never really does things the way the "normal" person does.  The normal course of treatment is to do 1/4 shot first, then 1/2, then 3/4 and then up to full dose.  However, as I didn't respond well to the 1/4 dose, my neurologist had me stay on 1/4 dose until I stopped reacting strongly.  I didn't really cooperate, however, and by mid-August we were due to be on holidays for 2 weeks and I knew I would not be able to do the injections myself.  The office agreed to let me take a two week vacation from my injections. HOORAY!    We had a wonderful two week vacation away from bills (ha ha, those would come later once again), responsibilities other than making meals, and I was just allowed to relax and be at peace!   It took awhile for my body to feel a little better, but by the second week (which was at Long Beach, WA), I was feeling wonderful (as wonderful as I can get at this point, that is).   Just staring at the ocean all day, playing with the kids in the sand (YES!! I actually had energy to PLAY!), and just being with my family without stress was so life-giving.   It makes me wonder what the keys are to this whole thing -- is it less stress?  Is it the clean ocean breeze?

Once back home in early September, life got back into the crazy schedule that it always reverts to, and of course, the Avonex was back into my life.   I started with the 1/4 dose again each Friday, and then after a few weeks of that I decided to start trying the 1/2 dose.  I really didn't want to enslave my sister (who gives me the shots) into a life of every Friday morning having to travel to my house to be my nurse.  I HAD to try to at least eventually work my way up to full dose.  Once at full dose, I would be able to give the shots myself, as it is a self-injector pen where you do not see the needle. 

I would have some days where I could accomplish my goals for the day, but most days have only a few hours of productivity.  Undoubtedly at some point during the day my body would drain of all energy and I would be out of commission once again.  After a few weeks on 1/2 dose, I started to really feel very weak and "horrible". There really is no good way to describe it.   Upon the third shot at 1/2 dose, it threw me in bed for three days without being able to move much.  I realized then I had made a mistake and asked to go back to 1/4 dose.  Talk about feeling like a loser.. Here I am having a few months of constantly being sick and in bed, feeling horrible and am still only able to do 1/4 dose?   It felt like I would never get back to a normal daily routine again.   I took the next week's shot off of my schedule as when the Friday came around, I was still in bed and unable to even attempt another.   The following week I started up with 1/4 dose again.  That weekend was not too bad. I was able to actually go out (with lots of Tylenol and Advil) and do scheduled activities.  However, by Tuesday, I could feel my decline.   I had another shot again the following Friday, and that is when things took a turn for the worse.  On Saturday I crashed in bed and again couldn't move much ... and here we are at Wednesday, and I'm barely functioning.   Last night I thought .. "I wonder if this is what it's like to be dying".  I felt as though I was being poisoned and the toxic feeling has prevented me from sleeping much at all for the past four days.   Yesterday, I called my neuro office and explained my symptoms and she told me to STOP all injections.  "Clearly, betaserons aren't for you".  Music to my ears, and heart.

I am sorry this is such a long note.  Guess I should have been keeping up with this as then everything would be organized neatly by date, and not one long diatribe.  

I wonder how long it will take to get this nasty thing out of my system.   I am feeling like death today.  I am dragging my body up and around to take my kids to ballet, art, etc.  There is no life beyond that -- there hasn't been a life for many many months.  This takes a giant toll on your emotional and spiritual life.   Emotionally, I cry at most anything -- I just don't have any more energy to continue -- and yet I must.  There is no choice.  Spiritually, I continue to wonder why God is silent to me.  I wonder if I matter (and yet in theory we all know that we do).  To continue to walk in faith -- I'm struggling with that.  I think my faith has dried up (for me anyway).  I manage to push out a prayer now and then in desperation, hoping upon hope that one day He will actually do or say something to let me know that He does notice me .. and that there is a purpose to all this pain and suffering.  It is SO difficult to teach your children "faith" when you feel like yours has been trampled.  I continue to try.  Everything for me is one second at a time. I cannot look more beyond that.

My children have been a light in this darkness.   Their hugs have dropped little bits of life into this dead body.   I love how they like to remember good things.  They often talk about Oma and Opa (my parents who died over 6 years ago) and how they can't wait to hug them in heaven, they keep asking me what I would have named the baby we didn't get to hold, who would now be 2 years old as of last week.  They tell me all their favorite names.  Julianna tells me how she wants a sister.   A very difficult one is how they daily say to me how they wish mommy could run and play with them, and not be in bed all the time.  That makes me tear every time.  Yesterday, Ryan said to me: "I guess you are now my 'stay in bed' mom" -- and I know he is sad.   My heart breaks.

I am too tired to pray for help, for rescue -- and I know others pray for me, when I cannot.  I am grateful for that.  This road is long, and I often want it to end.   I am thankful for family that keeps my eyes focused off of my pain but often I feel I just can't take it anymore.  I often wonder if someone else (who is strong) was supposed to carry this load.  I don't think I have what it takes to be a strong person.  Maybe it looks different from the outside looking in.   Oddly enough, through my pain, I now notice so much more pain in the world.   I know it just didn't appear all of a sudden - I know my pain has opened my eyes to see other's sufferings I couldn't see before.   I told my hubby it makes me feel useless that I can do nothing to help others.   'What good am I to others when I am always in bed? (other than to my kids)', I asked.  I want to help.  I feel like I cannot.  I continue to pray for a day that I can.

A few hours after posting the above, my 8 year old son came up to me and said it makes him really sad that I don't play with him anymore.  He then just broke down and started crying and won't stop.    Oh how I need for disease to stop hurting my family.
Last week's injection went okay without too much reaction. I was very achy about 10 hours later (instead of the 12 hours later last week).  By Sunday I was almost back to normal.  This week, however, was a different story.  

I had my injection at around 9:30am on the 13th, and aches set in early afternoon, much sooner than previous injections.   Friday night I took Advil PM, but it did not help me sleep, nor did it help with the aches.   I was feeling fairly nasty all Saturday.  We had a family get-together Saturday night and I managed to pull it off, basically pushing myself to be "involved".  Nausea set in late evening.

Again, I took Advil PM last night and hoped for a good sleep, however, even with taking Advil AND Tylenol, I was up most of the night in pain with nausea.  This morning, it was just worse.  This has been a new experience, as the symptoms seem to be continuing and worsening, rather than going away as before. This concerns me, especially since I'm still at half-dose.   I can't imagine doing this for 6+ months, waiting for my body to accept the Avonex and stop nailing me with the flu-like symptoms.   It makes me mad that I have to toss half of my upcoming year away to feeling sick, just on the hope that it might slow down the disease progression.  I know my family isn't enjoying me laying around all the time.
I woke up not knowing whether I still felt super achy after my first Avonex injection or whether it was just my normal self (I usually feel body aches much like a flu).   Got up and went to church and managed to focus through most of the sermon.  After the service was over, a couple came and prayed for me.  It was refreshing.

Disabilities are difficult. When you first get diagnosed, many people surround you and support you, but as the disability continues and/or worsens, many do not know what to do or how to respond and often avoid you.  A lot of times it's just that they feel uncomfortable, and it's easier to avoid you rather than to feel awkward in conversation.  It’s been quite some time since anyone has offered to come and pray for me.   I struggle so much with faith, as I feel so defeated.  At this point it needs to be the faith of others to pray for what I can only remotely dream of.  


Song Lyrics

This is not how it should be
This is not how it could be
This is how it is
And our God is in control

This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control

Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control

(Holy, holy, holy) x2

Our God is in control

(Holy, holy, holy)

Our God is in control

(Holy, holy, holy)
June was a pretty bad month.  I didn't post on this blog as I just didn't have the energy. Some have been asking how I faired the past month, so I thought I would upload my personal daily journal.


June 1/12 - (see previous post)

June 2/12 - Woke up with hubby sick .. took him to hospital where he spent the day.  Diverticulitis for him as well as a pulled muscle in his back.  Hard day for me as I had to take care of kids while feeling sick.

June 3/12 - Another long day with hubby sick.  Took major gravol tonight because I needed sleep.. slept better, but still feeling very toxic and disoriented.

June 4/12 - Skipped German and drums today.. just felt too sick.  Spend day with rachel at my house - I just lay on the couch.  Feeling horrible.. toxic, almost like I’m dying.  It’s a horrible feeling and it’s just so horrible to exist this way.

June 5/12 - Still feeling toxic.  Super dizzy, lightheaded and nauseous.  Had a hard time sleeping this night...

June 6/12 - Feeling horrible.. laying in bed all day.

June 7/12 - Exhausted today. Checkup with Dr. Louie on gums as they are receeding terribly and hurting. He wants to do grafting again, but I crashed so horribly last time.. I can’t see doing it again. Hubby went to see a physiotherapist for his back and his leg numbness went away.  Went out for homegroup to Wired Monk. Had gluten-free choc cake and coffee. Feeling ok, but tired.

June 8/12 - Felt so nauseated all night. no sleep.. super sick. Probably from the choc. torte and coffee last night?  Stomach starting to really bother me.  Horrible.. doubled my stomach meds and starting taking DIVOL plus for stomach pain.  Figured out later I am not supposed to be eating that type of stuff (coffee etc) due to it’s high acidic nature.

June 9/12 - Feeling a bit better.  Had a busy day, cleaning house, washing floors and vacuuming (very draining). Got kids registered for Friday Nite Bball and went out to Chilliwack for veggies.

June 10/12 - Almost feel human.  Was able to wake up at 8am. Haven’t been able to do that in weeks.   Made bacon and pancakes for family before church. I didn’t go.  Hands and feet burning less, although still doing so.  Fatigue less, but still there. Minimal bladder issues, if any.  Facial jaw pain minimal.  Gums still hurting.  Not feeling much weakness in my right leg at the moment.. Good?   Spent the day out at a family bday party .. did fairly well. Very tired but not feeling toxic.

June 11/12 - Went in to see my neurologist which was very disheartening.  He wants me to do injections again.  Felt like my life was over.. flashing before my eyes. The thought of that hell is just more than I can handle today...

June 12/12 - Had nightmares all last night of trying to kill myself in various ways. Obviously I’m more stressed about these injections than I realize.  I also had a dream where I was in front of the neuro for an appt. and he said to me, Hmm .. your scans came back clear, and as you have no symptoms, I would have to say you no longer have MS.  The joy and elation I felt at that moment was indescribable.   Unfortunately at that moment, I woke up.  Still reeling from the news of the shots. Whenever I think about it .. I just feel panic.  

June 13/12 - Took the day to stay at home and just relax. Do nothing. try to recoup.

June 14/12 - Woke up feeling exhausted and achy, feet and hands on fire, like people are taking a hammer to my toes.  Hard to do normal tasks. Just want to be in bed, but even laying on my body hurts.  Have MRI today to see what further damage has happened.  Had friends over for dinner, went okay. Final night for Interchurch baseball.  Sunshine so that was great for the boys to have fun.

June 16/12 - Couldn’t fall asleep and every time I did I was awaken by hubby's snoring.  Didn’t fall asleep until around 4am.  So exhausted.

June 17/12 - Skipped church.. made breakfast for hubby for father’s day.  He took them to church and I went back to bed.. took a gravol and slept off and on until 3pm.  I feel more human now rather than the horrible feeling of this morning.  Leaving tomorrow to visit friends .. so I need to get a good sleep tomorrow if I’m going to be up by 6:30am to leave :(

June 18/12 - Not a great night .. kids were up a lot .. too excited about going to see friends. Got up at 5:45am and left early to get there for 9:30am.  The trip takes 3 hours each way.   I did okay except once I arrived back tonight at 9:15pm , my feet and hands started to go crazy … burning.  So now i”m going to try to get to sleep with this pain.  Little J was near her wits end by 9:30 .. couldn’t stand being in the car and was melting down.  Brought a kitten home.. not sure it was the best idea.. but we’ll see how it goes...

June 20/12 - VERY bad hands and feet. Hurts to step on the ground. Tough since that’s how you walk and get places ;)   Almost through the process of getting financial aide for Avonex.  Just waiting for the final okay and then they will send in the order to Safeway and have the nurse do the training with me.  Fast process so far.  Decided it’s time to get back into full exercise after 2 years of being a blob.  Did some exercise bike today and some light weights for arms.  It’s a start. :)

June 22/12 - Didn’t do much yesterday.. just too tired.  Today, pain in feet and hands getting terrible. Have been taking gabapentin but not helping.  Got a headache today so took Aleve.  Got 100% funding for Avonex today. Safeway called and said I can pick up the drug anytime.  Will wait until nurse calls though, as I don’t need to get it earlier than necessary.  Need to get a fridge thermometer as the drug needs to be between 2 and 8 Celsius.  Tonight, I contemplated taking morphine, as my feet are in so much pain I can hardly walk on them.. even the tops of my feet now are just horrible.. I have no other way to describe the burning pain. Almost like I”ve taken a sledgehammer to the tops of my feet and I am left with the after-effect.  The entire right side of my body is now numb.  Even my butt .. is so sensitive like my feet it hurts to sit.  What have I left?   THere is no respite from this pain.  How can I live my entire life in this much pain?   I decided to just cry, and take 2 gravol.. hoping to knock me out so I can sleep. I am so emotionally exhausted. I don’t like life.. I don’t want to be here anymore. I have no choice.  God does not rescue me.  Somehow I must continue to fight, but I don’t feel any fight within me. 
It’s a battle.

June 23/12 - woke up today with feet worse than yesterday.. OW!!!

June 24/12 - didn’t sleep much at all last night.  Feeling so much pain in my feet, and now it is also in my arms up to my elbows.  Feel so discouraged and defeated.  Stayed in bed until 12:30pm  .. had lunch and got ready to go out with the extended family to bowling. Felt I should make myself do it to get outside of my sorrow.   It did help ..it was lots of fun and helped me to be distracted from my pain. They all came over and had pizza, again which was good, distracting from my pain.  Still don’t know how I’m going to gather enough faith to continue .. I feel so defeated and weak it’s hard to even want to try.

June 25/12 - Didn’t sleep much last night.  Too much pain.   Picked up the Avonex today.  The bill was $1,800.00 .. and that’s just for one month!   Thankfully, my bill was $0 … (as it is being covered each month).

June 26/12 - Felt REALLY weird today, very disoriented.  The only thing I can think of is I started on the new prescription for Gabapentin from Safeway, rather than my old one from another pharmacy.  I called SAfeway and they said sometimes the formulation can vary a bit, and try to go down from 4 a day to 2 .. and see if that helps.  It did.. The rest of the day I only took two 300mg's (one in AM and done in PM) and the dizziness was much less.

June 29/12 - Nurse arrived at 1pm today for my first Avonex injection. It is only a 1/2 dose... I will have a shot a week for 4 weeks and then I will go to full dosing.  My sister Marilyn was here, as she was able to get instruction as to how to do it for me.  The first 4 weeks, as it's only a 1/2 dose, is only in a syringe. There is NO way that I can inject myself.  I can barely watch the injection, let alone do it myself.   After the 4 weeks, it will come in a injector pen, so I won't have to worry about that, I'll just have to get the courage up to press a button to inject.  I am a little nervous about side-effects after I go to full-dosing, but I will cross that bridge when I get there.

I’ll leave out the details of this first injection, but it went well.  I was waiting for the “flu-like” symptoms to kick in after a few hours, but it wasn’t bad.  I had taken an Aleve two hours before the injection and a T3 just before, and then alternated Advil and Tylenol Extra Strength the rest of the day and was only slightly flu-like.  I went to bed hoping that I had missed the worst.  Unfortunately, I woke up at 1:30am fully in flu-mode.   I was achy from head to toe, and the rest of the night was fitful with dreams of being sick.  

June 30/12 - I spent the day on Tylenol and Advil, but making myself busy to keep my mind off my body.  I went out for breakfast with my sister-in-law and spent the morning at Wired Monk relaxing.  At times I had difficulty concentrating, but managed to pull off being “out”.  Later in the afternoon, we had company over until the evening, which was another good way of keeping me distracted. 
By May 25th, the pain my my feet and hands had increased to the point where I could not sleep at night anymore. I had contacted my neurologist and he was unable to set up the IV steroids as a course of treatment before the weekend. He suggested I go into emerg that day (Friday) to have them set it up directly at my local hospital. After a long 8-hour day waiting, it was then shift change at the hospital (7pm) and someone slipped up and didn't pass on the information to the next staff that I was waiting for a neurologist. Another hour later and the neuro left for the night, without seeing me. Once the staff realized their mistake, they called him on the phone and he refused to order the IV steroids, telling the staff to just send me home with morphine and to call my doctor on Monday. At that point I just broke down and cried. I had spend an entire day sitting in a chair waiting, no food, no water. I was exhausted. It was then 10pm. The resulting weekend was a blur. On morphine, I did sleep, yes, but it also kept me sleeping later than noon, and the rest of the day was a mental fog. Nasty drug! I managed to survive the weekend in that fog, not recalling much. Monday morning my neurologist's office profusely apologized for my misfortune, saying "that is not how it was supposed to happen" (referring to the hospital refusing treatment). So, they quickly were able to set up the infusions to start on the next day, Tuesday, May 29th at 2pm. One more day.. just one more day!! Tuesday came and I was VERY glad it did. By this day, my feet hurt so much, that it was very painful to put any pressure on my feet. Walking was NOT a pleasant option.  I had gone from 100mg of Gabapentin per day to 1200mg a day, and it still wasn't touching the pain.

Infusion Day #1 - May 29/12


This infusion was different.  Instead of a period of one hour to infuse, it was over two hours.  Now while this means I'm sitting in that chair for over two hours, I soon realized it didn't burn in my arm, and over the week, seemed to keep other side-effects away.  Normally, my arm wouldn't tolerate the IV for more than two days, but this time, I lasted the entire four-day bout without any arm irritation or redness!  Two hours is the way to go!!  My neurologist had prescribed Ativan to help with sleep, as the steroids can keep you awake at night, but no matter what I did, sleep did not come. I think I got only two hours of sleep this first night.  I had major leg pain that set in in the evening which made it very difficult to sleep.

Infusion Day #2 - May 30/12

Second day ... everything is going smoothly, just a little tired.    Jordan decided to keep me company which was nice.  I had also had an appointment with a head surgeon today regarding my facial pain from months ago. He says it is NOT MS related, but rather jaw deterioration. Stuck a nasty camera up my nose to see down my throat.. blech. With the clicking in my jaw, it's most likely deterioration that may have to be dealt with surgically down the road. He wants to see my MRI in July and also if it gets much worse, he will schedule a CT of my jaw and sinus cavity to see if there is possible infection which is causing the deterioration. Nice to know it's not all in my "head" .. well.. it is, but you know what I mean :) Bottom line: just because you have pain, it's not always chalked up to .. "It's just your MS".   
Stopped taking the gabapentin today .. I want to see how much I can handle and see if I am finding any improvement in pain.  My body is WIRED, yet so tired.  Thankfully, no leg pain tonight, and only feeling a little hot.  Very thankful the weather outside was cool, otherwise my increased body temperature would  have made any summer temp feel like a desert!   Took another Ativan tonight to help me sleep, but unfortunately, I only had around four hours or so this night.

Infusion Day #3 - May 31/12
Another rainy day, thankfully, because I was so warm it looked as though I was sporting a new sunburn!  This IV treatment day was mostly uneventful with respect to difficult side-effects. I can deal with feeling warm.   I find myself not thinking clearly.  This bout of steroids is really messing with my brain.  I find I have great loss of concentration and have difficulty focusing.  I'm sure it's just all that is flowing through these veins.. or at least that is my hope!   Tonight I thought I would try sleep without Ativan, as it certainly wasn't helping me sleep.  Sadly, it was another loss-leader for sleep, not falling asleep until around 5am, when I took an Ativan. I think I'll try a gravol for tonight.

Infusion Day #4 - June 1/12
My beat-up arm is happy to be free of the IV. Now if I can only get some sleep tonight!  It is actually much more bruised than looks in the picture.  Apparently I'm a good "bleeder". hehehe
I feel so very disoriented.  I can't follow conversations well.. More than two concepts are introduced into one sentence and I'm lost.  Freaky feeling. I am attributing it to having not slept for days and this solumedrol pouring through my being.  Dizziness is a common side-effect, but I'm sure Kirk will argue that is part of who I am anyway.  I am going to try to forego the Ativan today and try plain ole' Gravol, and see if that does the trick.

Thanks all for your prayers and offers of help during this time.

My father-in-law emailed me a devotional today, which I found very fitting to where our lives seem to reside lately, so I felt I should post it below.  

Posted: 31 May 2012 10:05 PM PDT
by Charles R. Swindoll
God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear, though the earth should change
And though the mountains slip into the heart of the sea;
Though its waters roar and foam,
Though the mountains quake at its swelling pride. Selah. . . .
The LORD of hosts is with us;
The God of Jacob is our stronghold. Selah. . . .
"Cease striving and know that I am God."
—Psalm 46:1–3, 7, 10
Quiet our hearts, dear Father, and in so doing, remind us that You are sovereign—not almost sovereign but altogether sovereign. Nothing occurs in our lives that has not been masterfully planned and put together by You, our eternal God. Help us to enter into the truth of Psalm 46:10 personally and consistently. May that result in being still, enabling us to discover that You are God. As we cast our cares upon You, knowing You care for us, release our stress.
We entrust our concerns to You today . . . large and small, new and nagging. We long to experience peace-filled living by stepping off this treadmill called pressurized living. We pray that Your mighty presence would take the place of the stress, the demands, the struggles, the mess we've created. We ask that You would give us Your shalom—Your peace—like we've never known it before. We deliberately choose to trust You and to rest in You.
In the name of Jesus. Amen.

See also Psalm 34:4; Proverbs 16:3; Jeremiah 17:7; Philippians 4:19.

Excerpted from The Prayers of Charles R. Swindoll, Volume 2, Copyright © 2012 by Charles R. Swindoll, Inc. All rights reserved worldwide.
The last two weeks, I was starting to feel a little better. I was still feeling terrible, but "better" in that I didn't need to be laying around but was still tired and weak. My jaw actually had started to feel better and it wasn't aching anymore. There was still some numbness but it had gotten much better.

My little Julianna had her 5th birthday on May 17th. That was a very busy weekend. A few days later, I realized I was crashing again. My numbness in my face picked up and the discomfort in my face increased to being the entire left side of my face. I couldn't sleep well because of the pain (for lack of a better word .. it's not really painful, but severely achy). The weakness in my right leg has increased, and with each day I seem to be getting weaker.

This year has been a rough year. Each day seems to bring more struggles. My spirit is broken. I can't seem to accomplish the most normal things. My life has regressed to taking care of my kids (schooling etc.), not cleaning the house (no energy) and not seeing friends.. I just don't have the energy to go out.

It's hard fighting guilt, because my illness brings such stress to our family. I just so long to feel nothing .. no pain. I long to play with my kids, to have the emotional strength for another day. Sometimes pain is loud. It clouds all you do. You try to focus on the beautiful flower outside, but the shooting pain in your leg screams for attention. Wearing shoes proves to be difficult, because it just feels like an alligator is trying to cut off the circulation to your foot. My body is so sensitive even wearing clothes is uncomfortable. You sometimes search for the END button, but realize it's not there.

I posted a picture on Facebook recently, which is exactly how I seem to feel. When I try to make sense of my world, it feels like it's all messed up. This is a great visual of what seems to go on in my head when I try to figure out where to go from here. It's all just chaos.

On March 27, 2012 I woke up in the middle of the night by throbbing aches in my left jaw. This was the start of a period of ill feelings. This numbness and achiness in my jaw continued and increased slowly over time. To this day, I still do not know what is causing it. It could be the MS, but one can't always blame every malady on MS. Several weeks ago (April 19), I was at home with a few people over and I felt that horrible feeling in my body -- the one where you can feel the rapid onset of the decline of your physical state. I did not sleep much that night and since then, I've been struggling with my daily life. My energy level has been minimal. My ability to cope with lots of people around has been minimized -- by evening, all I can do is just sit around and vegetate. I do venture out, but it requires such energy and concentration to engage the world, that it wipes me out even more the next day. My entire body (skin) feels numb (rather than just my arm or leg), it hurts to touch my scalp, my head/migraine pressure seems to have decided to stop renting and move in full-time, and overall the rest of me just aches and continually sucks any energy remaining. I tried Gabapentin for a few days, but I noticed my restless legs in the evening going CRAZY .. so on the chance that is what was setting it off, decided to stop. I went to a camera class last night. Being in the evening, I was already exhausted and I found concentrating very difficult. At one point, all the people in the room were talking in small group conversations, filling the room with too many distracting voices. Oh how I wished at that point for the tall wooden wardrobe to be beside me -- where I could quietly get out of my chair, sneak into that wardrobe and into a quiet and peaceful (and snowy!) Narnia. Unfortunately, this is the world I am in ... and try as I might, I cannot change it -- cannot escape it, nor can I use strong will or determination to push it aside. I left that meeting completely worn out -- tired. There are times when you have the emotional determination of Job, suffering through life yet pushing through and seeing the blessings around you. Every once in awhile, it seems as though all the bullets that come your way make so many holes that your vessel will no longer hold any more strength or resolve. I found myself waking this morning, wishing I were 90 years old.. at least then I'd be close to the end. The days are long, but when you can at least feel semi-normal, you can manage it. When your body is working so hard to tear you down, and you feel like an alien with skin, it's just so hard to muster up any will to keep fighting. I just want it all to stop. I just want to cry and keep crying. But I can't. Responsibility. It's not the problems we face that define us, but how we choose to handle them. I feel like at times when I'm weakest, I do not cope well. How does one get to the point when you can hold strength to keep going at low points? How can I choose to handle this "problem" in a way that will be an encouragement to others? Nagging thoughts in my head also tell me, "what if it stays like this for the rest of your life?". I just can't even imagine how horrible... At this point I'm living one minute at a time, cancelling engagements and watching life from within the fish tank -- trying to remain as positive as I can. It is a war within.
Where did you come from? A few days ago, I started to feel the weakness come back in my right leg. A weakness that when you walk, it feels like it's a struggle to bring your right foot up high enough to complete your gait. Over the past few days, it has been increasing, with a heightened weak feeling all the way up to my knee. Drat. Was really hoping to have that not come back. Praying that it does go away again, but as we all know, this is a road we cannot pave ourselves, we cannot control the disease, it presents its surprises when it wants. The best I can do is to try to take the best care of myself that I can, and pray that God gives me grace to walk through it.

Found this on another blog, which hopefully will provide some help:

The “Foot drop” fight is so un-evenly matched….that it doesn’t take long to see who is the victor and “The Evil: “Foot drop” is now a permanent resident that you never invited to your now……..disabled mobility.

Your only hope is to keep that dominant “Soleus” muscle stretched……Always!!!!!

Trying to bring the angle from shin to big toe to less than 90 deg.