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Unread 04-30-2012, 05:25 AM   #1
Judy2
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Don't know if I'll be able to get through this since my energy level has been pretty close to zero the past few weeks. Time for another vent, so please bare with me or else go on to something more cheerful. I'm just so sad all the time, sometimes tears and sometimes not, but this miserable disease has really beaten me down and used up most of my body. I feel just a fraction of the person I used to be.

Everything hurts, nerve pain, legs are still swollen with blister-like lumps between my knees and feet, vision is blurry and eyes hurt. It takes so much energy to just get dressed in old pants and sweatshirt/tee shirt depending on the weather, there's no energy left to put on makeup and fix my hair like I always did everyday in my former life. So I usually look and feel like something the cat dragged in.......nothing personal to all you kitty lovers.

Too tired to talk on the phone -- it's so difficult making the words come out, don't even answer the thing most of the time. As for company, forget it. Even having my family here is too much as they don't really know how I feel. Yeah, Mom/Grandma has MS..........but she's had it for years, so what's the big deal? Then there's the "bathroom" issues....UGH!....there's no way in the world to make it to the bathroom in time. Of course wearing these lovely "things" to hopefully keep the flood contained, causes my skin to have problems where the elastic is.

Anyway........you get the picture. Besides all this, I never go anywhere, so what's the purpose? After all these years, it just makes me so sad to have had my life ruined by this monster. Why does anyone have to continue living like this -- year after year??? Sorry to be such a wet blanket but you're the only ones I can "talk" to and who understand.

....to all of you.
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Unread 04-30-2012, 05:52 AM   #2
Blessings2You
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I still have brainwebs this morning, so no words of wisdom (yet), just a hug and confirmation that YES, someone here understands. I'm guessing that many of us (me) have been in your situation. Not the exact symptoms, of course, but at the "what's the point" point.

It's draining to have to re-invent ourselves every time something gets subtracted from our lives, and it's especially insulting when there's little left to drain, or so it seems.

Pain - fatigue - anxiety - frustration - any one of those things can be too much, and I'm sorry that you're getting them all at once. Is your doctor being aggressive at helping you deal with what CAN be dealt with? Addressing your pain?

I know a lot of MSers are determined to "fight" this disease and not let it "win". More power to them! If that's what works for you, then I'm right behind you! That's never worked for me. I just get more discouraged when I "fight" and the lesions and the disability don't go away.

The only thing that works for me is to say, "OK, this is the way it is now--how am I going to adapt?" It isn't easy. Usually I go kicking and screaming, shaking my fist and crying. Then I honk my nose, take a deep breath, and try to figure out how adjust the best I can. I'm not always successful. Pain is the worst.

I'm sorry...I wish I had words of wisdom instead of just lots of words! Someone will be along soon with some useful suggestions. I'm hesitant to say "I know how you feel", but I'm confident saying "I understand."
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Unread 04-30-2012, 06:34 AM   #3
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no advice, just warm hugs
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Unread 04-30-2012, 07:41 AM   #4
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Judy

You're in my prayers. This is a rough disease. So many have it but no two are the same. So how is anyone supposed to understand it?
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Unread 04-30-2012, 07:42 AM   #5
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no brilliant solutions to offer, just sympathy from a fellow member of the club that none of us really wants to belong to.
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Unread 04-30-2012, 09:13 AM   #6
Lynn
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Hi Judy

I am so sorry that you are feeling so lousy, and I am sad that I have nothing to say that will fix the awful situation you are in..... all I can do is send you a heartfelt hug and lots of good wishes that this will somehow get better (even if only a little).

Lyn
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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Unread 04-30-2012, 09:50 AM   #7
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couldn't agree more!!! Life is battle we will all eventually lose so why fight it!!!
Living with MS isn't a fight, its a challenge to live to the fullest with integrity.
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Unread 04-30-2012, 10:55 AM   #8
mochagirl13
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Just know that you are not alone. This monster invades your life and just when you think you've got a handle on it, it changes courses. This darn monster not only attacks you physically, mentally, emotionally and socially, but financially. Your symptoms and responses may not match anyone exactly, but we know where you are coming from.
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Unread 04-30-2012, 11:37 AM   #9
Mariel
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Agreed with other posters, but let me just say this about a possibility: You have these big blisters on your legs. and "skin problems where the elastic is". I don't think this is a typical MS symptom--not to say you don't have MS, but maybe you have something else too. How about looking at Porphyria (I have it, and discovered this through the old MS forum which preceded this one by many years). First try looking at a Safe/Unsafe drugs list for Porphyria, to see if you match. That's what I did. I've put this suggestion up here before, that others look at Porphyria, so sorry, gang, if I'm monotonous.
People with Porph have many of the same symptoms as MS, but some things more or less they divide on--in my experience with reading posts for many years, I'd say that most MS people do not have the strong ab pains (really ER level) of Porph, and most MS people do not have the skin blistering of Porph. And with Porph you are very likely to be depressed--"mental issues". Take a look. I'm sorry such suffering came your way.
Especially about the skin sensitivity at the elastic--how many years did I suffer with this before....take a look.
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Unread 04-30-2012, 12:15 PM   #10
NurseNancy
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judy,

first let me tell you i was so moved by your post and really feel for you with all you're dealing with.

please don't give up hope tho. can i suggest that you contact your pcp? it sounds like you need to set up an appt. list all your sx's (symptoms) so when you're there you won't forget to tell him/her anything.

even tho the dr can't make your MS go away, it seems like some of your sx's can be controlled. like the bladder & skin issues.

have you ever considered some short term counseling? or tried an antidepressant?

i'm not making these suggestions flippantly. i've been thru many of them at one time or another.

if you can't find a good dr call your local MS society; 1-800-FIGHTMS. they will help you find resources.

you are not alone. i know you can find just a bit of energy to find more answers. let us know how you are.
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