I feel like the Mom from "What's Eating Gilbert Grape?"

[smalltowngirl]

This fatigue is UNREAL. I'm doing PT three mornings a week before work (just started this week) and started a yoga class once a weeknight. I know the extra activity is supposed to give me more energy, but sheesh! I'm tired!

I used to be able to stay up until 2 or 3AM and then get up for work at 6:30AM, no problem. I volunteered for every committee coming and going. Now I am in bed when I get home from work, just basically sitting there until it's time to go to sleep, which is usually around 9-- 10PM at the latest! It's such a drastic change from pre-MS.

My kiddos (8 and 11) come into my bedroom for help with homework. I eat dinner, fold laundry from my bed, etc. I've gained 30 pounds. I'm 35 years old and I feel like that Mom from "What's Eating Gilbert Grape?"

I just took my first dose of Provigil. Hoping to see results, so fingers crossed. I tried Amantadine and it helped for a couple hours and then I would crash. Hoping Provigil gives me the energy I need to write a grant for a new position at my work, be a "good mom," and WAKE UP!

Are there any other parents my age out there battling fatigue? What's your method? Did Provigil help? I'd love some advice... or you can feel free to vent about your exhaustion here too!

[pennstater]

It is acatch-22. Studies show exercise makes the most difference with fatigue. You are starting with PT. Some therapists may even be willing to help you set up an exercise routine that works with any limitations you have.

Hope both the PT and Provigil work for you.

[MauiGirl]

Me too!

Yup. I'm 40 with a 11 and 14 yo, I was informally diagnosed in February (no lesions over time, so we'll wait a year and look again). I just started Copaxone. Some days I just can't even do anything. Nothing.
My notes on fatigue so far:
-I have a history of anxiety and I just switched from Lexapro to Prozac. I'm definately noticing a difference in my energy-it's easier to get up in the morning and I stopped sleeping ALL DAY on my days off.
-I also think my energy levels are better if I don't get hot at all during the day-it takes hours to feel better even after I get cool.
-Do you notice a energy difference around the time of your period? That time of the month also hits me hard.
-I cut out as much processed sugar as I can-no more cookies or candy or quick sugar. This was hard because when we're tired, we get the "I need sugar now" signal from our brain and I reach for the most processed thing in the pantry. Not only that, it's usually the easiest thing to eat. But the sugar doesn't really give me more energy, and an hour later I've added a sugar crash to my MS fatigue. So I'm trying to be better.

I think a big thing, as Moms, is to not beat ourselves up about this right now. My husband is a fireman and works 24 hour shifts-there are days I do almost NOTHING for my children except drive them to and from school- they've learned to get themselves ready for school, make their dinner, find their clean underware, etc. I feel so selfish for not taking care of them, for not being the Mom I was and want to be, but I litereally can't. I mourn the loss of that, and I'm not sure I'll get over that for quite a while. After I have a good cry, I look at the bright side. My children are becoming independent, responsible people. And microwaveable meals are healthier than when I was a kid, LOL. I also try not to lay in my bedroom while my kids are awake-I feel so disconnected there-so I lay on our couch in our living room, so I can at least be there physically, which makes me feel less guilty.

The other thing I really struggle with is accepting help. I don't want help, I want to feel better. So I'm taking a good look at my schedule and farming out whatever I can. I'm trying to be better about sharing what's going on with me. If you still live in a small town, smalltowngirl, I'm sure there's people who want to help-it's what living in a small community is about. And I'm trying not to feel guilty about my sweet husband doing everything.

Here's to us both feeling better soon!

[smalltowngirl]

It is acatch-22. Studies show exercise makes the most difference with fatigue. You are starting with PT. Some therapists may even be willing to help you set up an exercise routine that works with any limitations you have.

Hope both the PT and Provigil work for you.

Thank you so much! I can already tell a difference with balance and flexibility from yoga and PT.

[smalltowngirl]

Yup. I'm 40 with a 11 and 14 yo, I was informally diagnosed in February (no lesions over time, so we'll wait a year and look again). I just started Copaxone. Some days I just can't even do anything. Nothing.
My notes on fatigue so far:
-I have a history of anxiety and I just switched from Lexapro to Prozac. I'm definately noticing a difference in my energy-it's easier to get up in the morning and I stopped sleeping ALL DAY on my days off.
-I also think my energy levels are better if I don't get hot at all during the day-it takes hours to feel better even after I get cool.
-Do you notice a energy difference around the time of your period? That time of the month also hits me hard.
-I cut out as much processed sugar as I can-no more cookies or candy or quick sugar. This was hard because when we're tired, we get the "I need sugar now" signal from our brain and I reach for the most processed thing in the pantry. Not only that, it's usually the easiest thing to eat. But the sugar doesn't really give me more energy, and an hour later I've added a sugar crash to my MS fatigue. So I'm trying to be better.

I think a big thing, as Moms, is to not beat ourselves up about this right now. My husband is a fireman and works 24 hour shifts-there are days I do almost NOTHING for my children except drive them to and from school- they've learned to get themselves ready for school, make their dinner, find their clean underware, etc. I feel so selfish for not taking care of them, for not being the Mom I was and want to be, but I litereally can't. I mourn the loss of that, and I'm not sure I'll get over that for quite a while. After I have a good cry, I look at the bright side. My children are becoming independent, responsible people. And microwaveable meals are healthier than when I was a kid, LOL. I also try not to lay in my bedroom while my kids are awake-I feel so disconnected there-so I lay on our couch in our living room, so I can at least be there physically, which makes me feel less guilty.

The other thing I really struggle with is accepting help. I don't want help, I want to feel better. So I'm taking a good look at my schedule and farming out whatever I can. I'm trying to be better about sharing what's going on with me. If you still live in a small town, smalltowngirl, I'm sure there's people who want to help-it's what living in a small community is about. And I'm trying not to feel guilty about my sweet husband doing everything.

Here's to us both feeling better soon!

MauiGirl,

I connect with so much of what you've said. I, too, have a history of anxiety. I'm also a sugar addict, but I know I should cut out so much of that bad sugar I love. Seriously... if it were a drug, I'd probably be committed to a rehab for it. I know how much it would help if I moved away from starches and sugars and moved more toward clean eating, but it is SO HARD. The more sugar I have, the more I crave. I actually had to have a hysterectomy after my second daughter, so I can't relate to the extra fatigue during that time of the month. However, I'm certain you're right!

My daughter told me over the weekend that she thought I liked hanging out in the bed. It crushed me. I have always been that mom who hosted the play-dates, planned the parties, maintained the schedule for our entire family, hosted holiday dinners, etc. Now I'm just not. I just can't. And so quickly, it seems my kids have forgotten how much running around I used to do, and I fear they see me as "lazy." That is the worst thing about this fatigue. I know I'm missing out, but knowing they think I'm choosing to miss out is far worse.

Accepting help is hard for me too! Living in a small town is helpful-- you're right! I have let a friend take over pick-up/drop-off for my daughter's church youth group. I've let myself off the hook when it comes to double checking homework, by telling myself that my oldest will be entering middle school and she's old enough to start becoming self-reliant when it comes to homework. I let the crumbs stay on the floor longer than I used to, and I tell myself that's ok. My micromanaging personality got a nice wake-up call! And I am thankful for my husband as well. He picked up a lot of slack for our family.

This is all such a process... We will get through it.

[SNOOPY]

Hi smalltowngirl,

Exercise, PT, OT, are definitely beneficial and can help improve some MS symptoms.

It is also important to find balance between your family/social life, work life, and exercise. This can be hard to do initially as it can be a learning process.

I believe you are overdoing it. Do you have anyone who can help you with your children, laundry, etc.? For now, you might consider discontinuing the Yoga class. Let your PT/OT know that this is causing more fatigue. A knowledgeable PT/OT will know to decrease the amount and/or intensity of you PT/OT.

When having MS exercise should be started out very slowly and increased very slowly. If you are being treated the same as every patient (with the same expectations) then your PT/OT isn't familiar with MS. We don't see improvement with exercise by pushing our limits, but with a slow and steady pace.

Once you have found balance in your life and have a better grasp of what helps/hurts your MS, then you can experiment with pushing beyond your current "limit." Some do okay pushing their limits, some do not.