Acceptance or Not???

[foggyrose]

You'd think after 30+ years of living with MS, my emotions should have dealt with it -- right? -- WRONG!!! For years I seemed to have come to terms with it and accepted each new phase and loss. However, this past year or so the symptoms have progressed rapidly even while taking LDN, and I'm really having a rough time living with it.

It's become sooo difficult trying to stand with swollen legs/ankles/feet -- getting dressed is a nightmare -- everything I touch ends up on the floor -- bladder incontinence -- severe pain 24/7 -- spasticity -- freezing cold after eating -- and on and on. Often I'm saying to myself while in tears, "I don't want to do this anymore"! "What purpose is this disease serving?" There doesn't appear to be much quality of life left, being alone and housebound.

Usually whining isn't my "thing", but I just can't stand it!!!! Perhaps it's something to do with getting older and seeing so many years pass by with utter frustration. I do take 150 mg. Zoloft daily, but this isn't like regular depression. Does anyone else feel like this? Any suggestions for overcoming? My "head knowledge" is there, but my body doesn't agree.

HELP!! Thanks you guys..........foggy

[twisterred]

Accepting the disease is one thing.
Accepting that one's body shoots continuous, new reminders of the disease is another.

MS is very emotional (at least to me).
When I was having new symptoms pile on top of each other, I'd lose it.

I had heard my Dr say I have a progressive, neurological disease.
No one had told me how it would affect basically everything!
So, I get not accepting MS.

We all have a purpose in life, even if we don't exactly get what it is at all times.
Believe it, it's true.

Sorry that the Zoloft isn't helping as much as you'd like
Wellbutrin has helped me with depression more than anything. And I'm on a higher than average dosage.

You are wonderful for writing and expressing your feelings.
Hopefully, things are brighter for you now.

[Windwalker]

Since you have posted this under the PPMS/SPMS section, I assume you have one or the other. I'm guessing SPMS because I find it hard to believe a person could live 30 years with PPMS.

I have PPMS for about 10 years...if you go back to the first sign of any trouble. It was so mild for a long time but over the last 3 years I have gone from walking unassisted, traveling weekly, etc. to now needing a powerchair and barely able to take care of myself.

I have no delusions about making it another 20...I'm 49 now. I give myself < 10 yrs. I probably will wish I was dead long before my 60th birthday.

I know what it is like to have so many issues. I usually deal with it pretty good and with some mild painkillers feel pretty decent most of the time.

Not lately though. I have been in a lot of pain going on 4 days now. I have these bouts of increased neuropathic pain from time to time. This time I am really feeling exactly as you described your feelings.

I feel I have nothing to live for or look forward to. I'm worth so much more (financially speaking) dead than alive...alive I'm just a burden. I'm not the suicidal type and never have been but I think about it all the time...no harm in that.

I also feel I am experiencing new "things" happening to my body and I just get thinner and weaker with each passing year.

I have no advice, just empathy and understanding. I don't think we can possibly be positive all the time. My MS is full of ups and downs. I just try to weather the downs and hope I stay on a level that does not leave me totally helpless and bedridden. You do not sound like your totally helpless. Maybe you should be grateful for that.

[freedom1]

I am so sorry you are feeling the way you do. I have been battling MS since my early 20's I am 52 now.

The emotional rollercoaster is different for everyone. I have had my share of ups and many many downs. Sometimes I feel as though I missed my children's childhood completely, too tired, too short on patience, physical limitations and now foggy memories. They are all successful adults in their chosen fields, I guess it wasn't as bad as I sometimes think it was.

I worked hard in college to prepare for a successful career, I climbed the corporate ladder fairly quickly, achieved the level I wanted only to have to choose disability 2 years later. I am home now with very little stamina for much, all of those fancy degrees a distant memory.

I find alot of solice in just being alive and being able to watch my girls enjoy their success and their lives. It would be so much worse not to be able to experience this.

Depression is a very big part of this illness maybe a different medication would help. What about support groups? Or friends? Just talking with people who understand this illness may be a big help. I realize that is what this board does, but sometimes face to face is better.

You say you live in NEPA, I also live there and know their are all types of groups out there for this purpose.

To me acceptance is the start of peace.

[foggyrose]

Thank each one of you for replying to my questions. It does make me feel better by once again realizing I'm not alone, but then it also saddens me hearing what you're going through in your journey with this miserable disease. I am actually feeling somewhat more "normal", whatever that is, and am sure your support and encouragement had alot to do with it! My thoughts are with all of you -- and yes, I am SPMS.

Take care........

[HereIam]

Foggy,

Your post was so desperate and sad and lonely. This disease is just plain nasty, especially in it's secondary stage. It is progressive and cruel and at times relentless.

I too have SPMS and am in a period of decline that has been going on for 3 months and doesn't seem to be ending.

I'm not sure if I have advice or comfort for you. Some times to help ourselves we have to work very hard and when we feel just plain miserable and done in, the energy required is just not there.

The only way I've found to cope is through the distraction of helping others and of diving into the hobbies I can still manage. Without these activities I'd be toast. Through the assistance of a cab service and also the Senior Shuttle (even though I'm not over 65, my disability makes me eligible for rides) I am able to get to an outreach center 2 times a week where I volunteer at the desk in the food pantry. Every other week I go to a sewing circle at a local fabric shop and once a month I go to a local animal shelter where I pet the kittens or puppies to help socialize them. And when ever someone calls to ask me to go out, I say Yes, even though every fiber of my being is screaming NO NO NO I want to stay home and curl into a ball.

It is not easy to do these things, and was not easy to arrange them. However, I feel that without them, I'd be much worse off than I am now both physically and mentally. I come home from my activities totally exhausted, but I'd be in that state if I stayed home anyway.

[Kittianne54]

When I read the initial letter, I realized there was others like me, but when I read the third, I kept looking to make sure it wasn't me who posted it!

I'm PPMS, dx'd 10/01 when I was 47. I'm 56 now, and steadily declined to the point that I don't like leaving the house.

There is not a single thing that this disease hasn't touched. I feel like such a prisoner in this body. I feel just a step away from being bedridden. Less than ten years ago, when I was dx'd, I was just walking a bit funny!

I wish assisted suicide was legal in my state. I'm on both Wellbutrin and Lexapro.

[palmtree]

We have more choices than we think. There is an organization called Compassion and Choices that provides information about our rights and specific information on a very simple legal way to chose the time of our death.

It's sad that we have to think about these things but it's reality. Having a choice has given me comfort. I want to take it out of the shadows. I wish you the best whether it's here on this earth or beyond.

[foggyrose]

Kittianne What a cruel disease this is to take so much of life away from us. I too was diagnosed at 47 but am now older, at 67 How did that happen??? My symptoms started when I was 32 but went into remission for quite a few years....thank the Lord!!! I'm going to check out that website palmtree mentioned since most of the time I seem to wonder why I'm still here. Just wanted to give you a hug and say I understand.

Hugs...........foggy

[nightflyer]

IT IS SO-O-O HARD!!!

I think many of us in this progressive state have thought about the alternative....I know I have many times...but I'd never do that to my husband. It does make you wonder why!!!!!!!!!!!!!!! If my life is this bad, and my world gets smaller every few days, why????????????? And the...what have I done in this life (or past ones) so bad that I deserve to suffer this decline? I have found no answers.

[Wyomingsmiles]

Some days, or weeks or months are ever changing

My heart goes out to all of you.

I have Progressive Relapsing Multiple Scelerosis, (PRMS)

and even though I Know what I was dx'd with I just

couldn't remember the 4 types and had to look it up.

I was dx'd with MS in 2006 and in a way I was glad to

know that I had not been making up illinesses since I was

23 yrs old. But the glad ends there.

I am now 60 and most of my MS is cognitive. It gets pretty

scary when sometimes I almost forget my own name!

Other examples are things such as:

I can no longer cook which I used to love doing because I

now pour the ingredient down the sink instead of the pan!!

I also drop things or totally miss the table when trying to

set things down.

The only thing that keeps me going are my children and

grandchildren. I could never be so selfish to end things because of tem.

But there is no reason to be in pain. There are some pretty good drugs that your neuro can prescribe.

I am on some pretty heavy duty pain meds, and also amphetamines just so I can function. I've been on the same dosage for over 5 yrs now and never take more than what the rx states.

There is also many anti-depressives and maybe you just haven't found the right one yet.

I am unable to take any of the MS meds. (skin rejection)

so I'm fortunant my Drs. have calaberated and keep me comfortable.

I hope some of my suggestions are helpful. This is long and I have a hard time getting my point across, I apologice.

Hugs to all. We have a hard struggle but then there is always someone worst off.

God Bless and take care.

[foggyrose]

Pain Meds?

Thank you for your encouraging post, Wyomingsmiles. Could you tell me what pain meds you are taking that make your pain bearable? I just take two Aleve a day to take the edge off, but haven't found anything else that works, other than making me feel like a zombie. From what I've read, this nerve pain is one of the hardest to control.

Any information you can throw my way will be appreciated. This disease is so nasty and unrelenting. I'd give just about anything to have just one day free of pain.

Hugs...........foggyrose

[flossie]

I really am glad I read the Acceptance or Not threads. It was really helpful to know I was not alone. I've had MS for 14 years and really feel the same as foggyrose and others. I've been so discouraged lately. I am 63 and feel like this is as good as it gets. I try to put on a happy face for my kids and grandchild but it is getting hard. I no longer drive and really feel like my independence is gone. I was hoping Ampyra would make an improvement in my walking so I didn't feel so trapped. Unfortunately I feel better when taking it, but my walking has not improved that much.

Thank you all for sharing.

[drmarc]

My partner of 27 years was diagnosed with MS in 1983. After two serious exacerbations leaving him paralyzed he went into remission in 1986 until 2004. During that time he completed Law School and I achieved a Psy.D. in psychology.

Fast forward 20 years and he is now SPMS. He has been steadily progressing and can barely take a step. Our life of travelling, getting together with friends, going out shopping together, or just having joy in our hearts has been taken from us. He is home everyday while I go off to work. The pain of watching him suffer, both emotionally and physically, takes my breath away every minute of every hour of every day.

I yearn with pain for the life we had, the life we should have., and the life we will never have. I am a psychologist who is supposed to help him get through the agony, the fear, and the depression that consumes him, yet there are no words or tricks in my bag to help him.

How does one live with this disease? How do we go on and find meaning in our life? How do we survive? We struggle with these questions everyday.

I look for the most simplest of things to get me through the day. For me, it is simply having this person in my life, being able to look into his eyes every morning, and knowing that we have each other.

Nobody knows the pain of MS unless you live or your loved one has it.

But there are things you can do to make it a bit easier. Take control. Focus on those things that you can still do. Engage in those activities that will help to distract you from the reality of your illness, such as watching your favorite movies, listen to books on tape, or surf the internet.

Most important, do not ever give up on hope. Read up on those studies that are looking for new treatments and cures. For example, follow the Mylien Repair Foundation, read up on Berkley Bionics. stay on top of Stem Cell Research, and most important connect with others who can understand what you are going through.

Three years ago we purchased two Segways. We eventually put a Seat (segsaddle) on them to make it easier for my partner. The Segway changed our lives because it allowed us to go for "walks" and no one could tell which one of us was disabled. For those times that we go for a ride, my partner feels normal, well feels like he did before he lost his ability to walk.

And when he needs to upgrade to a scooter, I think I might just get one myself so we can continue to "cruise around" together.

It's all about thinking outside the box, taking risks, and not letting MS win the fight.

God Bless!

[Cartoonist2]

I have PRMS too and with me, it's a different symptom almost every day. They all go away, most of them, stuff keeps lingering. I have been ridiculed for 39 years till I finally got a diagnosis. I didn't say what I my issues were on daily basis to people, besides the real obvious ones, because I was fed up being laughed at, especially my mother and ex partner.

Then I finally was diagnosed. I had accepted that I had a serious issue looooong before that. I also accepted that I will get worse, but I was used to that already. Getting used to new problems is another thing of course and that takes time.