Comments on: Find Me In Fatigue

By: Karin

Karin — Mon, 02 Nov 2009 16:04:39 +0000

Seldom have I read as succinct a posts on how it feels to live with MS without being able to describe it fully. Thank you for doing me and fellow MS sufferers a great favour! My only regret is the fact that people without the disease won’t read about it and will remain in the dark.
Please, do not ever lose your sense of humour, it will carry you through the tough times.
Karin

By: Darline Kilpatrick

Darline Kilpatrick — Sun, 01 Nov 2009 19:22:18 +0000

Amy, so glad you posted this on FB, certainly helpful to read more than once.

Here is my favorite passage, “This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you.”

I often tell myself that I wouldn’t necessary know I have MS if it wasn’t for the fatigue that never goes away. Other than that I have very few MS problems. The fatigue doesn’t go away though, I’ve adjusted to it, but it sure feels good to read about how hard it is to handle, from someone able to present the info so well. No wonder it is so hard on me. lol

Thanks for the great writing!
Dar

By: Finding Familiarity in Fatigue « MS~LOL: Multiple Sclerosis a Life Of Learning

Sun, 01 Nov 2009 16:48:48 +0000

[...] to this one resonate the most. So, I’m taking a moment to invite more of you to read this post, discussing what is perhaps the most challenging MS symptom to live with and explain to others. The [...]

By: Suz

Suz — Mon, 26 Oct 2009 18:29:27 +0000

Hi Amy – finally the fog is lifting a bit and I just read your post on fatigue. R u a writer? if not you should be – your description of what it feels like is so right on – i loved the sentence – “Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.”

I too did a “fair” type thing with my parents this summer – within 1 hr i felt like I was sinking into the ground. The fatigue comes and goes – warning signals are when my leges and feet start to “buzz”. It seems to overcome me or intensify in situations with alot of activity – which is sooo hard to avoid because I am a social being and love to adventure. That’s where the frustration and depression sets in. All of what you said was intense to see on a page – thanks for putting words to it.

By: Eva

Eva — Wed, 08 Jul 2009 22:17:30 +0000

I’m so happy to hear that … I’m not alone. It’s tough having to explain almost daily why I’m so tired. Just yesterday I had a great day, maybe I played with my three year old too much who knows? Today I’m so exhausted, it’s hard to explain the muscle pain & I can’t concentrate, so I must take a nap.
I did become distant with those around me, it angered me @ first. Just don’t think about it … is what I hear most often.
I’m a tough lady I don’t use pain meds I think I have a high tolerance for pain. It’s the muscle spasms, weakness and
my vision that at times, although I know it’s MS, still wonder why, and how does it effects me on certain days.
Eva

By: Sharon

Sharon — Sat, 23 May 2009 22:42:22 +0000

I find that the fatigue is a tell tale symptom that I am headed for an exacerbation. The last few weeks I have been feeling fatigued. I wake up in the morning feeling like I never slept or haven’t slept in a week. Now I am actually having an exacerbation. My left arm started to feel weak and painful yesterday and now its both and my back. I am also stiff all over and have 2 lovely fever blisters on my mouth. It even hurts to breathe. I have to say that the fatigue is one of the hardest parts of an exacerbation to deal with. I could sleep all day and all night and still be tired right now. I called my Dr today and they told me “You need to see soemone”. My thought is duh! I told them I needed medrol dose pack and they told me to ge to the ER. Frustrating dealing with MD’s who do not understand that when you’ve lived with this as long as I have, you know what you need to get out of an exacerbation. I have learned to live with the falling and cold sensation in my feet and occasional fire feet. But the fatigue kicks my butt every time!

By: Grethe Nordgård

Grethe Nordgård — Sat, 23 May 2009 22:02:54 +0000

I’ve been trying to explain how fatigue feels, especially to my 12 year old son, but it’s hard to put it into words. I think you people have made a very good job of explaining it. There’s both mental and physical fatigue and I experience them every day. The physical kind is the flu-like type where all your muscles are exhausted and you feel like sleeping for a year, and the mental kind is the type where you just can’t gather your thoughts because your head is totally “foggy” and you just want to bury yourself under the cover until the fog lifts.

The worst part about this symptom is that it’s invisible on the outside and as many of you mentioned, you often get the comment: “I’m so tired myself”, “You look so good” or: “You always seem to have so much energy!” I’ve even gotten the comment: “Are you sure you really have ms, you seem so normal!?”

I always feel that I have to keep going. I can’t just go to bed or take a nap, because there are always things to do and my son doesn’t seem to realize that I’m sick. I guess he’s in that hormone-state-of-mind where everything revolves around him I’m still a student (mainly because I’m afraid my brain will “die” if I don’t keep exercising it) and I have a part-time job, but it’s a struggle and I don’t know how long I can keep it up.

To sum it up: fatigue is the invisible monster that keeps us from doing all the stuff we used to do – without even thinking about doing it…

By: Joy Prior

Joy Prior — Thu, 14 May 2009 13:39:36 +0000

I really enjoyed reading this and I am so glad I saw it on facebook. I was dx in 9/08 and the fatigue is my biggest challange right now.

I have posted my question on several groups in facebook looking for opinions on how to deal with it. For years I have had periods of fatigue and have always just pushed through them because I had no choice (have to have a paycheck…). Now that I know it is the MS I am trying to figure out if I listen to my body and rest or push through it like I always have.

Common sense tells me to rest but it goes against the grain. It seems there is a part of me that feels that if I rest I will somehow be “giving in” to the MS and things will progress at a faster pace.

Any thoughts on how to figure this out?

By: Connie Nichols

Connie Nichols — Tue, 12 May 2009 04:45:47 +0000

OOOH, I want MOMA! Sadly, that is NOT in my future, so I shall have to be satisfied with your report of the trip !

By: aglol

aglol — Mon, 11 May 2009 23:58:16 +0000

LOL! I love it Connie…. and I look forward to Madeline “pimping” a ride. I was very close to getting one a few years ago, and the process took longer than the summer, and thus I did a big nevermind. Easy to back out. I greatly appreciate your clear articulation of how I’m cheating myself out of good times. And I will take that adaptation all the way to the scooter store! (Have you ever seen that movie-Adapation?) Okay.. back on topic. Thanks for adding further power to my practically made decision. Now I just have to wade through the red tape… and plan a trip to MOMA to reward myself. Thanks for your ongoing encouragement!
xo
ag