Fatigue

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Fatigue

Postby MrsGeorge » Wed Aug 06, 2008 2:26 am

I am really struggling with fatigue at the moment. I am at work and practically in tears because I am so exhausted. It's obvious because my physical stuff gets worse - I'm staggering like a drunk person, my limbs feel weak and I can tell that i am having trouble forming words / my speech is slightly slurred. I feel like such a bad wife too - my house needs cleaning but by the time I get in from work I have no energy to do anything!

Is there anything I can about it? I do sleep a lot already.
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Postby gwa » Wed Aug 06, 2008 6:22 am

This is one of the symptoms of MS and as far as I know there is not much to be done for fatigue. I have never found a magic pill that did anything for me.

The best I can suggest is getting enough sleep and eating properly with a balanced diet so that you get the nutrients needed by your body.

Welcome to the frustrating world of MS.

gwa
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Postby Wonderfulworld » Wed Aug 06, 2008 6:32 am

Hi MrsGeorge]
oh I'm hearing you. The last 15 years I've had bouts of all that and it's so hard trying to struggle at work and keep your life going too.

One thing you might want to look into is Symmetral - doesn't work for everyone but ask your Neuro or GP.

For slightly more alternative help you could try N-acetyl-L-carnitine supplements - I felt they did help me a bit.

Acupuncture really did help me but I know it's not for everyone and some MS stuff it can do nothing about.

If you can afford it could you employ a cleaner for say, 2 hours? I did and it was the best money ever spent. It really frees up your time and energy - why waste the precious energy on housework. I am sure your partner would much prefer to see you happier rather than exhausted having cleaned your house.

Hope it lifts a bit soon - it feels like it's there forever when you're in it, but it nearly always lifts after a while.
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Postby gwa » Wed Aug 06, 2008 6:45 am

WW is right about the maid, but I was hesitant to post it because, unfortunately, so many people are young when this disease strikes and don't have much money.

The best thing I did for myself was to quit work and hire a maid. If you are able to work, hire one now to help you out. I should have hired a maid while I was still working as it would have helped me a lot.

A lot of people don't have this option and just have to do the best that they can. I am sure that your husband will be supportive for you no matter if the house is spotless or not.

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Postby TwistedHelix » Wed Aug 06, 2008 6:48 am

Hi Mrs. George,
It sounds to me as if you're pushing yourself beyond your limits of the moment, and MS fatigue doesn't always respond to sleep in the same, cause-and-effect way that "normal" tiredness does. Amantadine has certainly helped me with my energy levels, but it doesn't help everyone. It can also disturb your sleep if you take it too late in the day, but has the added bonus of being an antiviral.
Of course diet and supplements might help, though you would be in for a long period of trial and error and you may, in the end, have to face the possibility that you simply need to reduce your workload … Plus, of course, leave a note on the fridge with detailed instructions for your husband on the art of using a duster!

One more thing, you are NOT a bad wife… you are every bit as good as you always were, but you have MS – as I said to someone not long ago: forgive yourself
Dom
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Postby gwa » Wed Aug 06, 2008 7:14 am

TwistedHelix wrote: Plus, of course, leave a note on the fridge with detailed instructions for your husband on the art of using a duster!

One more thing, you are NOT a bad wife… you are every bit as good as you always were, but you have MS – as I said to someone not long ago: forgive yourself


Dom is absolutely correct here. Prioritize and use your energy wisely, you only have so much energy every day and when it is gone, it is gone until tomorrow.

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Postby cheerleader » Wed Aug 06, 2008 8:35 am

Dear Mrs. George-
Fatigue is the most debilitating symptom of MS for my husband. He feels guilty at times, too, because he's not able to do all he would like to for our family. Because fatigue is an "invisible" symptom, most people write it off, "I get tired, too! Must be getting older."
Jeff hates when people say that stuff, because he's been tired, but MS fatigue is a whole different thing. Your body is literally exhausted from trying to send transmissions thru faulty nerves.

All of the above advice is spot on. BTW, I loved the pics of you at church camp....helping little kids have a terrific summer...you sound like a wonderful, loving gal and I'm sure you're a great wife. I second Dom, please forgive yourself for being sick.

Provigil (a drug for narcolepsy) is used off label in the states for MS fatigue. It's been really helpful for Jeff. He's able to get his work done (although he still needs cat naps) but it's given him some of his energy back. So does a good diet and supplements like carnitine.

From all of your posts, I've seen a wonderfully sensitive, giving and caring young woman. My thoughts and prayers are with you as you deal with your MS-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrsGeorge » Wed Aug 06, 2008 9:01 am

thanks guys. My husband Adam does do a lot but I feel so lazy because he works full time too!

I know that I overstretch myself but I feel so guilty for letting people down if I pull out of things - I work full-time, have 2 voluntary jobs and a second part-time job! And that's without my church commitments - I'mm lucky if I'm home 1 night a week and half a day at weekends!

I might seriously look into the cost of employing a maid for a couple of hours a week - it's a losing battle trying to hoover the cat hair off the carpet!
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Postby gwa » Wed Aug 06, 2008 10:30 am

MrsGeorge wrote:
I know that I overstretch myself but I feel so guilty for letting people down if I pull out of things - I work full-time, have 2 voluntary jobs and a second part-time job! And that's without my church commitments - I'mm lucky if I'm home 1 night a week and half a day at weekends!



You need to put your own needs ahead of all else. Organizations will find others to help if you pullout. Do not let the guilt trip damage your own health and well being.

What you are trying to do is very stressful and a lot can be eliminated. One of the biggest things that people with chronic diseases MUST learn to do is to say,"NO", and not feel guilty.

You need as much rest as you can get in order to work and take care of you and your husband. I am really begging you to back out of most of your volunteer activities. It should give you time for yourself, which is necessary.

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Postby Loriyas » Wed Aug 06, 2008 11:05 am

I agree with what everyone else has said. It seems that MS strikes those people who are involved in the most things so it is hard for a person like that to let go. But you need to prioritize and only do those things that give you the most pleasure. I know, easier said than done! But if you try to do too many things, then none of them will be done well and you won't get enjoyment from any of them. Plus, you will exhaust yourself to no end and then be good for no one.

If it is at all possible to hire someone to help with the housework then do that. Even if you have to have someone every other week that would at least help some. Also, I too, have had success with Provigil. I know not it does not work for everyone but you might give it a try. For me, it helps enough-it's not like it is a miracle by any means. But even a little is a positive.

Go easy on yourself! We all do the best we can and that is all that a person can do!

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Postby MrsGeorge » Wed Aug 06, 2008 1:36 pm

Thanks - I floated the idea of getting some help with Adam and he wasn't keen at all. I ended up phoning my mum in tears because I felt so bad and my house was so messy. She came over and did my housework - i felt so ashamed but I am so grateful to her that she did. I just sat on the sofa and cried - once she got here she wouldn't let me help her!

I still don't think Adam gets how tough it is for me- and he is very slow at getting stuff done himself! He seems quite happy to live with mess but it really depresses me.
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Postby gwa » Wed Aug 06, 2008 4:35 pm

MrsGeorge wrote:Thanks - I floated the idea of getting some help with Adam and he wasn't keen at all. I ended up phoning my mum in tears because I felt so bad and my house was so messy. She came over and did my housework - i felt so ashamed but I am so grateful to her that she did. I just sat on the sofa and cried - once she got here she wouldn't let me help her!

I still don't think Adam gets how tough it is for me- and he is very slow at getting stuff done himself! He seems quite happy to live with mess but it really depresses me.


If this is an accurate description of your life, you really need to get rid of as much responsibility as possible. If it isn't making you money, get rid of it. All of the volunteer work is taking up a lot of your time and wearing you out. None of us could keep up the kind of pressure for our time that you are under.

Good luck to you. There is no doubt that you are a good, kind person and that you want to help others. You are a winner in my book.

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Postby Wonderfulworld » Thu Aug 07, 2008 1:51 am

Mrs George there are some wonderful people on this board like Dom who can gently say things and get the point across.
I'm not one of them :lol:

Thanks - I floated the idea of getting some help with Adam and he wasn't keen at all.

If Adam doesn't like the idea, let him do all the housework, end of. I'm serious.

Why should it be more your responsibility just because you're female?
The more apologetic you are about the impact of MS on your life, the more people won't take it that seriously - that's something I've learned. The more matter-of-fact you are the easier it is. I think you should go ahead and hire the cleaner yourself and let your hubbie either put up with it, or do the housework himself.

Sometimes you have to admit to yourself that you can't do or have it all with MS, but it's a very difficult adjustment to make. Prioritise - you've got a marriage, a job, volunteer work, housework, a social life? - you just have to work out what you CAN do with the energy you have so the whole lot doesn't get jeopardised. Look at it like a pie with slices taken out - how big can those slices be?

It has taken me 10 years to realise this and I suffered much exhaustion trying to do it all during that time. It helps if you are kind to yourself when you've MS. When you're older I can bet you won't look back at these years and think "I am so glad I exhausted myself keeping the house clean" - know what I mean?


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Postby MrsGeorge » Thu Aug 07, 2008 5:20 am

thanks wonderfulworld! I appreciate straightforwardness!

tbh - Adam is a really nice guy but sometimes can just be a thoughtless arse! I sent him a long and strongly worded e-mail today basically telling him that he needed to pull his finger out and trying to convey what I need from him and that tired and MS fatigue are so very different! He has apologised but I'll wait and see if he changes.

I ask him to do things and after a week and several reminders (which then makes me nagging) I give up and do it myself - to which he then says 'I was going to do it'. Either that or he completely forgets I asked him and claims I never did!

Ultimately - I would have the energy to clean the flat if I didn't have to spend so much time picking up his crap first!

Sorry for the rant. i am just feeling very frustrated with it all at the moment.

I am going to sit down (when I have 5 minutes) and write a ilst of all my commitments and see what I can cut out / cut back on!
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