SLIPPING AWAY......a real downer...
 

Do you ever get this feeling that your life is on a downward slide and nothing can slow it down plus nobody else is aware of your feelings? This pretty much describes my life these past weeks.

All I want to do is sleep -- at least try to. The constant, horrendous fibromyalgia pain always gets in the way. When I awake, I'm as tired as when I went to bed. A good part of my 'awake' time is spent nodding off. Using this powerchair all the time, my legs and now arms, keep getting weaker. It's almost impossible standing long enough to wash my hair at the kitchen sink, let alone trying to take a shower.

The vision is blurrier than it used to be. My bladder control is non-existent. By the time I simply get dressed in sweatpants and shirt, I'm puffing and completely exhausted. My feet and ankles are so swollen, my shoes no longer fit. Nothing will correct this according to my doctor.

The spastic legs......ouch! How do you get "stiff-as-a-board legs" into/and out of bed? It's impossible to get them covered up until the spasms gradually stop. Still sliding.....

Whatever happened to my "former life"? It was so rewarding...making music, reading, being a grandma, helping others, etc. Now it's reduced to sitting here in my house alone for days on end, trying to live like everything is normal. Big slide.....

Yes, depression even with an increase of AD's. How can we not be depressed? Just another part of life going away....

Does anyone else feel this way? Of course the disease is in the progressive stage, but why even bother? It's really getting hard trying to function each day and harder yet figuring out why?

((((((((((((Judy))))))))))))) I'm so genuinely sorry to hear you're going through such a crap time - can you see a light at the end of the tunnel or is that a daft question?

Yes, I can't speak for others, but I feel like my life used to be one big circle which over the years has gradually shrunk to a pin prick of a dot. You're not alone in feeling the way you do - and I fully support and understand your way of thinking. Please hang in there, one thing about MS is that you never know what tomorrow will bring - and just as it can bring bad, so too can it bring good. PM me if you want to talk luv.

Yes, I have felt that way Judy, and I am very empathetic to your thoughts & emotions. :(

It is often our circumstances that make us feel so bad/sad, but perhaps a new antidepressant might actually help somewhat? They can lose their effectiveness, I imagine, and a new drug might do what it should. :D

Are you still having relapses? Sounds like you might be going through a particularly bad time, so it could be . . .?

I was going downhill quite fast in 2004, after a serious of back-to-back attacks. I have felt so much better (EDSS has even improved) since going on LDN. If you are on nothing else, it might be worth a try.

Sorry to hear you are feeling down and having a hard time.

Cherie

My dear Judy, Yes I understand and have felt this way, periodically. If it gets too bad, then I know that it's time to change ADs. I even posted here, I think, that I was down and thought about changing meds and then it lifted. I don't know why, my AD started working again and I just felt better. Maybe it's because I took charge. It was empowering.

If this has been going on for awhile, Judy, you should empower yourself to get help, before it completely takes over. I have been in that abyss and never want to go there again. Ask your Doc if you can try a new AD. I believe there is just the right AD for everyone. Mine is Paxil right now and for the last 6 years, but it may not be the one for you. There are many that did not work for me. I kept trying until I found the one that worked for me.

Do you have Family or close friends that you can talk with. Maybe a counceler would help you. Don't hold this in to save others the worry. You need someone to worry about you and to hold you.

I just hate that you are feeling so low and unworthy. You know you are a good person and that you are needed and loved. MS is an evil disease, sucking our strength and playing with our psychological well being, but God gave us tools to help ourselves, so don't give up the fight to feel better.

You will be in my thoughts and prayers, as always.

Sally

AGR, Cherie and Sally -- Thank you so much for your hugs and encouraging words. It really meant alot knowing you care and can identify with these rotten feelings, although it makes me sad that you can.

My doctor increased the zoloft rather than going with another AD since I've been on many of them over the years. Hopefully the increase will help.

Cherie -- I've been on LDN for a couple years and it does help somewhat with the bladder issue, but it too is getting worse. The neuro has labeled me SPMS and I don't seem to have relapses, it just keeps progressing all the time and never is any better. With the fibro, I'm extremely weather sensitive so whenever rain/snow/just a lower pressure system comes along, the pain is excrutiating. It feels like I'm constantly getting the flu along with the ms symptoms. So far, no pain meds have touched this.

Probably a specialized counselor would be helpful to talk with, but I don't know of any in this area or where to look to find one. My 'kids' aren't close enough to see regularly plus I wouldn't feel comfortable speaking about some of these "ms things" with them. There are a couple good friends, but you know how it is, unless someone actually has ms, they just don't get it. The same with fibromyalgia -- everyone has aches and pains, but this is a whole different thing.

It's mostly the increasing changes we have to adjust to and accept in our lives with this miserable disease, that are so difficult to deal with. Yes, I know there will be some better days, but being unable to get into my car to drive without help, unable to leave my house, unable to take one or two "normal" lousy steps along with the constant pain, is just too much to deal with at times.

Thank you again for your kind words, the human touch is always a God-send.

Gentle hugs.....Judy

judy,

been there, done that ... still doing it. the constant weekly (sometimes daily) adjustment to even more progression can become old, fast. i have not found the answer either. bah, humbug! :confused:

instead of taking it one day at a time, you have to sometimes take it an hour at a time. hang in there -- ((((( :) judy :) ))))

Yes, well, everyone is saying they've felt that way. I feel that way; pretty much all the time. It's the freight train inexorably approaching. I can see it, I can feel it, and nothing I do will stop it, slow it down, or get me out of the way. What helps me?

Getting real, for one thing. I can't do something today that I could do yesterday? Fine, get in the moment (as in this is today, not yesterday), and now I've got two choices: find another way (this can include asking for and accepting help from someone else), or don't do it. My life is enough of a struggle without the useless and depressing fight of trying to do something that has passed from "fabulously difficult" to "physically impossible."

Getting more flexible. This includes being able to change my routine when my routine results in negative outcomes. It also includes ditching the false pride and asking for help before a difficult moment becomes terminally difficult.

Having at least one person in actual space and time (not the computer) to whom you can say anything, without that person trying to convince you your reality is distorted and/or screwed up, and blowing sunshine up your butt. For instance, Lisa had to help me to pee the other night. She got me all settled on the couch for the evening, then the moment she walked out I lost control of my bowels. I just lost it. I looked at her through my tears and said:"What would you do if you were me? Would you stay?" She said, "I don't know what I'd do. But I know if my dog was suffering as you do, I'd take her to the vet and have her put to sleep." Of course, then she totally cracked me up by singing softly, "Smelly cat, smelly cat, what are they feeding you? Smelly cat, smelly cat, it's not your fault." Laughter through tears. My favorite.

Moving forward within my current reality. Get grab bars. Get a lift. Modify my living space. Get a transfer bench for the shower. See a therapist. Anything, as long as it helps me to cope with reality as it is, not reality as I wish it were.

These things help me.

Chris

I'm there too, Judy. I keep up my hopes through faith, the only thing left.

I can't take anti-depressants because I have porphyria. Porphyria probably was the biochemical cause of my MS. My MS is probably that kind, not the auto-immune kind. We talked about that kind some time ago on the new-old forum.

I would love to take ANY anti-depressant.

My only help is getting outside in clean air. Even in your chair, have you got a place where the air is clean and the view beautiful? I miss the Pacific NW, but our clean air and sky-views in New Mexico are great.

Also, I get help from a TV program we can get here, Light of the Southwest, which has great guests on it. It can be accessed by computer in many places, even worldwide. It's on 7-9 Mountain Time. It is something I look forward to all day, and it makes me laugh as well as "filling me in" on things I want to know.

We are snowed in again, fourth time this winter....too cold, dark.

Mariel

Isn't that sad? we humans - we humans who are supposed to be HUMANE - put our beloved fur babies to sleep to cease their suffering. But we HUMANE humans are expected to exist (no way can you call it 'live') with, struggle through and ENDURE all the physical suffering, humiliation and difficulties - why? because our HUMANE society has decided so. I wish to gd there was a plug you could pull or a switch you could throw that would end it all when the time came to end it all. Instead we have to contend with responsibility, guilt and others who are well and have no idea whatsoever what we have to go through. So, when is enough enough?

I am constantly blown away by this. I would never let an animal of mine, a dog, cat, or horse, suffer this way. But in this society we have this idea of "life at any cost" for human beings. I see this constantly: a woman with terminal breast cancer (which is excruciatingly painful) has to suffer right up to the bitter end. The doctor who gives her a humane and merciful OD of morphine is seen, and punished, as a killer. Concern over becoming an addict trumps concern over a life endured with chronic, disabling pain. Suicide is comprehensively seen as the result of distorted thinking produced by depression and mental illness. A family refuses to turn off the machines of a parent, child, or sibling in whom all meaningful brain activity has ceased. And in the middle of the greatest extinction crisis since the extirpation of the dinosauers, we're bogged down in quarrels over the ethics of using human embryos that were otherwise bound for the trash can in stem cell research, research that holds out the promise of alleviating the suffering of a life already on the planet.

I also wanted to add this to my original reply -- the three rules of coping with trouble.

1) Get your head out of your ***.
2) Calm down!
3) Pay attention.

Chris

Are you a member of a local MS or Fibromyalgia society? If not, maybe someone from one of them can call you and set up a mentor program so that you can actually have a voice to talk to and tell you that they do understand. I pray that you will eventually feel like you can talk to your family about your 'MS things'. I don't know what I would do without mine. Of course my sister has Fibromyalgia and my Mom has Lupus so we all cry together sometimes. We joke that all together the three of us have the equivalent of one brain now!

Oh WOW! It is so sad that so many of us are living (?) our lives this lousy, sub-human, painful way. I hadn't thought about the comparison between us and our pets before in relation to quality of life -- ending life. But you're right, as tough as the decision is to end that beautiful, unconditional lovey life of our fur-babies, we do it to put an end to their suffering when there's no other hope.

However, we're human and have the ability to make decisions, know right from wrong according to our beliefs, etc. No matter our situation, we always hold out hope for a miracle. That's not to say it makes life any easier. As to the stem cell situation, I recently learned that stem cells can be found in hair follicles and amniotic fluid, along with from the umbilical cord. For my personal pro-life position, this makes so much more sense than killing a potential human being. Please don't jump on me for this opinion, you're entitled to yours too! :)

I respect and thank everyone for your comments and suggestions. Doydie, perhaps I can find someone in a local support group to share with even though I'm not a member. As to speaking with my family -- I do to an extent, but these are my adult "kids" and I know they're secretly hoping they don't get these diseases. I have no brothers/sisters/ etc to speak with, pretty much on my own.

Thank you all again for being here and so supportive. Bring on that "magic pill"!!

Gentle hugs.......Judy