Perhaps you’ve noticed that I have been a bit sparse around here lately. You’re not the only ones I’ve been neglecting. You haven’t seen my fridge, but let me tell you, he’s been neglected something fierce as well.
I’ve been quite under the weather and I didn’t want to make a report of it because there just wasn’t any good sense to making a public fuss about it. I had a marked relapse of MS that was made worse by all my regular symptoms getting revved up significantly. On top of this, I had extra kids to stay on top of and my health took a huge hit.
This flare up had me more afraid than I care to admit to. I feel as though I am trying to walk in neck high mud. Everything I put my hand to is an effort beyond description. The fear of a permanent disability hovered just above me every day and it started to really affect my thinking. I couldn’t write about much else and so I chose not to write.
Why mention it now? Because there is light at the end of the tunnel. And I am reasonably certain it is not a train.
The symptoms of the actual attack, which included a twitching nose (VERY annoying) and a dropping foot, have all but completely gone away. My fear was not eased as the symptoms eased because I was finding myself still unable to keep up with my home and family to the standard I have for myself.
My perception of everything changed at about 10:30 last night. I got up and started to clean the kitchen. Really clean the kitchen. I kept telling myself that I needed to go to bed soon and that I should stop, but then I realized that the same thing had happened the night before, and the night before that. What was it about the hours after ten or so that suddenly gave me a boost of strength and ability?
The air conditioner.
You’ve heard me gripe before about the severity of our cooling drama. What I didn’t realize was the profound effect it was having on me. I’ve had MS long enough to be well acquainted with Uhthoffs Phenomenon, which is the sudden worsening of neurological symptoms brought on by heat exposure. It is why I do not walk to the store between May and September.
The best my air conditioner can do on a very good day is keep my home at 79 degrees during the hottest hours. This means that all day long I am working up a sweat and getting over heated just enough to maintain a certain level of inability, but not enough for me to make the connection until just last night.
Eric and I were both overwhelmed with relief to make this discovery. And it helped us come up with a solution. Eric will be waking with the children while I will be using the night time hours to do my housework until we are able to move. We are not certain where we are moving, we just know that it has to be a ground floor place that is not subject to heat rising.
During the day I will simply do my darndest to avoid getting hot. This means I will only do the bare minimum of housework and childcare, leaving the bulk of housework for the evening hours when I can work without falling apart.
It also likely means I will remain sparse around here, as I tend to get wild attacks of word salad when I try to write in the heat.
I have been in a bit of a dark funk these last few weeks, thinking that all my years of relative good health were coming to an end and I cannot begin to tell you how positively over the moon I am at these recent developments.
God’s grace is sufficient for me. His power is made perfect in my weakness. I live this. And right now I am going to live it with an ice cold Dr.Pepper and a rerun of I Love Lucy.
June 13th, 2008 at 10:00 am
Kudos on your discovery. The good thing is that if you are taking steroids for the relapse they will keep you up at night anyway (lol). But seriously, don’t stress about cleaning the house. I have started the 10 minutes a day approach and it works. Since you have kids, put them to work. They get free rent, food and clothes, make them work for it
I know this is easy to say as a non-parent but I am a teacher…
June 13th, 2008 at 10:40 am
My problem is that I am unable to rest if the house is messy. I blame my mother.
This new solution makes it so much easier for me to relax and just play with the kids, even as laundry piles up and dishes are stacked. I know that I will be able to get to it later. And then I get to sleep in for staying up late. It really is a great thing. I may not want to move. Now I’M loling.
June 13th, 2008 at 11:08 am
I love you lady. I wish that i could send you my huge house AC. I was worried about you when you posted about the heat when you got back from OK. I am glad to hear you are coming out of it. I would take it from you if I could. You are in my prayers. My heart is sad. I pray that you find an awesome place that is ground floor with the awesomiest central air and that the Bradys send you Alice.
June 13th, 2008 at 11:58 am
This breaks my heart, Amy. I will be praying for you every day. And I am sending you a cyber-smack upside the head for doing that video outside IN TEXAS FOR CRYING OUT LOUD!
His grace is so sufficent for you.
Stay cool, sister.
June 13th, 2008 at 12:04 pm
I’m so glad to hear you have seen “the light” and that it’s not a train! Yay! I will be praying for your health as the summer months progress, and also praying that the Lord will send you some help for housework.
June 13th, 2008 at 12:05 pm
I think we often treat this like the big elephant in the room of our relationship. I know that it is a problem for you, but I am really unsure of how to help. Plus I feel like any efforts I make would never be enough to really help.
But then, last night, I began to pray for you. Not just “Be with Amy” prayer, but big, bold prayers. I think I felt I was hot to trot with my minor victory earlier in the day. And I was BOLD. Like bolder than I am with my earthly father. I hope that at the very least knowing that my big, bold prayers are being said can bring you more relief than I really could ever give you.
I love you dearly, and I hope you can find that perfect place to live that gives you the relief from the heat that you so desperately need.
June 13th, 2008 at 12:26 pm
I am so glad that you figured it out! And I am also glad you have another reason to get off of the top floor.
Maybe we can get you a cooling vest too- then you would be the most awesome on the street.
June 13th, 2008 at 1:44 pm
This makes me sad. I don’t like to think about you being in pain.
June 13th, 2008 at 3:08 pm
I think you are rather amazing. Your outlook, even in the midst of everything, encourages me. I was very sick most of my teen years and I know what it feels like to think, “Life as I have known it is coming to an end.” I feel for you. Saying a prayer right now.
June 13th, 2008 at 4:47 pm
Thanking God for his providence in your life. I love his clarity.
June 13th, 2008 at 5:05 pm
“My problem is that I am unable to rest if the house is messy. I blame my mother.”
Everyone should blame their mother for something.
Now, if I have to rest, you must rest too!
June 13th, 2008 at 10:54 pm
I am so glad that you discovered a solution to your problem. I will be praying that you will find the perfect place for you to live. In the meantime, enjoy many ice cold DP’s and the extra down time with your children!
June 14th, 2008 at 5:40 am
Go ahead and blame your mother but you come from a long line of “can never rest if the house is messy’ It is a multi-generational phenomenal. Glad you are learning to cope.
Mom
June 14th, 2008 at 6:12 am
Oh, Amy, I really feel for you. It is like that (at least somewhat) when I get low blood sugar. So I have SOME TINY idea of how horrible and confusing and frightening that can be. So NOT fun!
Thank God that He led you to the source!! That is SUCH a relief! ^-^ Take care!!
Laura H…
June 14th, 2008 at 9:25 pm
So glad you realized the heat connection, and praying that you find cooler digs soon.
Twitching nose…makes me think of Samantha on “Bewitched”…too bad the housework didn’t magically get done whenever it happened!
(((HUGS)))
June 16th, 2008 at 9:28 am
I thought of your friend when I saw this Saturday night….http://youtube.com/watch?v=fumb87FtuZo
Hope you are feeling better.
June 16th, 2008 at 9:53 am
If it’s not one thing it’s your mother…
My friend has MS and he is very affected by heat as well. I have the same “gotta get this place in order before I do anything else” syndrome…It can be exhausting and tough to let go of.
Praying for you be healed. Not even “made to feel better” just straight up HEALED.
June 16th, 2008 at 12:06 pm
If it will make you feel better, I’ll sit around too during the hot hours of the day. Then you won’t be the only one who is enjoying a cold drink and some TV when it’s 135 outside!
June 16th, 2008 at 2:59 pm
Man!! My heart goes out to you. Glad you figured out why it was worsening. Always better to know the ‘why’ than be left wondering, I think. Hang in there. I’ll be praying.
June 17th, 2008 at 12:06 pm
I’m glad you figured out what was causing the relapse of symptoms. I’m praying for you. Rest in the cool and in the comfort of HIS arms. Love you…
June 17th, 2008 at 7:43 pm
Amy!!!
Darling, take it slow. Really slow. I have found it is so easy to feel better for a day and than radically overdo. Would you believe I am just really getting back to normal now, after starting my last episode in March? I try not to live in fear of another one. I do respect the heat! To paraphrase Sam Kinnison, ‘move to where the air-conditioning is’!! I’m hoping you can.
The bitch about the episodes is that period of time when you don’t know if whatever it is is going to be permanent. That’s why I succumbed to the steroids my last time. Still not sure that it is worth it.
Being home with your kids with an MS episode is so hard. I’m thinking about you.
trrish
June 17th, 2008 at 11:04 pm
I hope you are doing okay. I’m with Kim — Praying for your healing.
June 17th, 2008 at 11:45 pm
Just droppin’ by to say hi. It’s hot out here in Cali. 104 today. Church is going well. Hope you and the family are doing alright. God bless. — Josh