questions and how do people deal with this?

[Jules A]

Perhaps this quote is more relatable: To live is to suffer, to survive is to find some meaning in the suffering.
- Friedrich Nietzsche

Love, love, love this. And would add..to flourish is to find moments of peace and happiness despite the challenges.

This lifetime can be rough so getting caught up in the "why me?" is counterproductive and wastes precious time. It is what it is. Keep moving it along for as long as you are blessed to be able.

[Tawanda]

Love, love, love this. And would add..to flourish is to find moments of peace and happiness despite the challenges.

This lifetime can be rough so getting caught up in the "why me?" is counterproductive and wastes precious time. It is what it is. Keep moving it along for as long as you are blessed to be able.

Clearly Mr. Nietzshe was having a bad day when he came up with that one! Although I don't think he was all wrong, I don't think he was all right, either. You are correct about "moments of peace and happiness" and how important it to remain open to recieving such moments.

Thank you Daisycat for starting this thread. I have personally benefitted from the wide range of posts from members old and new. It's all good.

[Daisycat]

Perhaps this quote is more relatable: To live is to suffer, to survive is to find some meaning in the suffering.
- Friedrich Nietzsche

I can relate somewhat more to this quote. Can't say I am surviving or finding any meaning in why this had to happen... but the first part is 100% relatable.

MGM - I hope your results come back and they are whatever you are praying for them to be. I wish you the best with this.


I think it is normal for people to ask why me. It is hard not to ask that. You see your entire future taken away from you, but see 75% of the other people in the world with their entire life ahead of them and it is hard to not ask why me and hard to not get jealous. And for the moments of peace and happiness... I have about 1-2 minutes every day of this. When I first wake up I don't remember about my curse. I usually spend a few minutes laying in bed with my dog and cat before the reality of my life sets in and I have to force myself to get out of bed.

I really have tried to find ways to be happy and to accept this, but I just do not think that is a reality for me. So I am going to set "goals" from my bucket list for me to work towards. My two things I am wanting to do now are go sky diving and get back to my "skinny" weight. I just need to find a place close by to go skydiving. The weight loss shouldn't be hard since I really never have an appetite anymore. People at worked are always shocked when I eat something since they never see me eat, but to be fair I have never really been a huge fan of food even before this happened...

I am just glad my practice manager approved my vacation request for the year anniversary of this. I didn't see why she wouldn't since I never take off for anything but I was worried since it would have been very bad if I had to work at that time.

[Myoak]

JulesA, your post was excellent. Thank you so much!

Life isn’t lived absent of difficulty for anyone, and for some there are incredible hardships. A successful life is not one of escaping hardship but of functioning well in spite it.

JulesA, you said something profound, “to flourish is to find moments of peace and happiness despite the challenges.

A story is often told as an example of that.

“Two artists each painted a picture to illustrate his conception of rest. The first chose for his scene a still, lone lake among the far-off mountains. It was a serene and beautiful scene; yes, very calming, very restful to look at. But the second artist, on his canvas, wildly painted a thundering waterfall. You could almost hear the roaring of the water. But a closer look revealed a fragile birch tree bending over the mist of the roaring water. At the fork of the branch, wet with spray, there sat a robin on its nest.” -Henry Drummond

Peace isn’t the absence of turmoil; it is calmness in midst of the it.

Dasiycat, no one is at peace with MS, there is no question about that. The real question is… can you have peace in spite of MS?

Right now, perhaps all you can see or hear is the thundering waterfall. It commands your attention and it is frightening. Will it subside? We think so. Experience has shown it usually subsides, not always but normally, it does. We control what we can and go forward functioning the best we are able. Although it may be turbulent, there are seasons.

Daisycat, the people who know you love you.

Many people who don’t know you care about you.

You have endearing qualities others recognize but you are largely unaware of them, it seems.

Girl, where are you getting these gloom and doom predictions of what your life will be like?

You may be the lousiest prognosticator since Punxsutawney Phil on Groundhogs Day.

How can you, or anyone else for that matter, predict what your life is going to be like 10, 20, or 30 years from now? Thirty years ago when I was spoon feeding my spouse after a bad flare-up, it didn't appear as though she would be leading Yoga and Silver Sneakers classes at the YMCA but today, she does. MS does not lend itself to accurate predictions 30 years down the road. Some are bad, some are good, many are between the two extremes.

However, we do know there are a few things which tend to make MS worse… low vitamin D, smoking, and stress, for example.

Swedish pwMS who smoked and did not stop after diagnosis transitioned from RRMS to SPMS 8 years sooner those who quit. Not always, but often the course of this disease is affected by what we do and don’t do.

Daisycat, you are under a great deal of stress; seek ways to alleviate it, lowering your stress can only be helpful.

Take a breath, inhale and allow peace to enter your body. Inhale peace; exhale anxiety; settle down, give yourself a break.

Please allow yourself the luxury of thinking, if only for a sneaky second, the possibility that your life ahead may have good days and even wonderful days in spite of this “curse”.

There can be peace in the midst of a thundering waterfall if we are open to it.

There is a time for everything. A time to be frightened and a time to go on in spite of it.

Thank you again, JulesA. You are so nice!

[Daisycat]

I honestly do not think I can find peace with this curse. It’s been almost a year and I cannot even type the words or say it. I am trying to find ways to avoid thinking about it. I am actually hanging out with some friends this weekend. We are having a game night. This was something we did pretty much every weekend before this happened and my boyfriend kind of agreed for me that I was going. He said if I still want to leave after 30 minutes we can, but he wants me to at least give it a try.

For me not thinking about it might be the only way I am able to find any small amount of happiness. I know the days I have to inject myself with my poison are always the worse days for me.


There are some days I don’t think about this – like yesterday at work. I was way too busy and too worried about my critical emergency surgery patient and my “simple” surgery patient. At least at work FOR NOW I can put this out of my mind and focus on the animals. I am one of those weird people that actually loves my job. I think that is why this is so hard for me. A lot of jobs can make accommodations for this curse. For me if I have trouble walking I can’t really carry a 50 pound dog after surgery or run to grab something unusual that the Dr needs that we usually don’t keep in the surgery suite. If I have trouble with my vision I can’t trust myself to safely see the monitoring parameters. If I start to think “slower” (for lack of a better way to describe it) I might not react as fast as I need to in certain situations. So it is really hard for me to think that even things that most people can deal with might cause me to have to go on disability and quit the job I love.

I take lots of vitamin D most days. Some days I forget just because I am in a hurry to feed my animals , give them their medicine , and get ready for work. I say I take it 90% of the time. I also haven’t smoked cigarettes since the day I went to the hospital for this. I would love nothing more than to buy a pack and smoke the entire thing. I miss nicotine so much. I don’t though. One reason is because it is expensive and my animals have decided I need to spend lots of money on them. And I do not want another flare. Stress is something else. The only way I cannot be stressed is different OTC pills and other random stuff.

[Tawanda]

A year really isn't that long. I predict you won't even recognize yourself in this post because you'll still be at the job you love and you will hopefully have decided to travel and stop worrying about a flare. Worst case scenario is that you have some wicked bad flare...there are hospitals everywhere. I have been to third world countries since I got my "curse" and although I NEVER needed to go to a hospital in 15 years, they were in those countries too.

As for losing your hair, some hairloss happens, for some people, with some medications, but it's not like chemo-therapy baldness. Doubtful anyone at work would even notice it, and if it did happen (and that side-effect is about as rare as having a flare that puts you in the hospital while on vacation) you could get on another DMT pretty fast if you wanted.

You said the OTC drugs are helping with stress, but how are they helping? If there is some awesome OTC drug for MS besides vitamin D at CVS, I want to know about it!

So what I have read in between the lines is that you have what I would consider a great life that deserves to be saved from the current rubble: an awesome job, a loving dad, bf, friends, a cat and a bucket list.

I wish you lived in CT...I would take you to my "bad yoga class" which takes my mind off my life's problems. I say problems with an "s" because mine aren't limited to MS alone, so if MS is the only fly in your life's ointment, that's another credit to your life in my book. Exercise has given me the best bang for my buck, more than anything else I've tried, for MS. Although I am guilty of some NetFlix binges myself, I still get my butt to the gym 4X a week...are you exercising? I read Montel William's books after I first got diagnosed. That is the first time I realized the importance of exercise with this "curse". He said if it came to a point where he could only move his neck, he'd do "neck ups". Well, he is in his 60s now and he can do a lot more than neck ups, and run circles around men his age without MS.

[Daisycat]

Otc drugs help because they are kind of like benzodiazepines with how They work but different enough that I don’t have to worry about withdrawal. And I can swap up between them. I just can’t take certain ones in the am because they make me sleepy. The ones I take in the morning are just ones that supposedly help with energy and focus. A girl at work was talking about how great they are so I decided to give them a try. I try to work out on my days off. Just some days it doesn’t happen. And this is how I see it. I HAD a great life and now I have a ticking clock that is “counting down “ until the day comes when I can’t walk and everyone will have to know what is wrong with me and my bf will leave because he really doesn’t want to be a caretaker and I’ll in up in assisted living before im 50. I really wish I could have just lived in ignorance until that day.

[Mamabug]

...I am actually hanging out with some friends this weekend. We are having a game night. This was something we did pretty much every weekend before this happened and my boyfriend kind of agreed for me that I was going. He said if I still want to leave after 30 minutes we can, but he wants me to at least give it a try...

I take lots of vitamin D most days...

I also haven’t smoked cigarettes since the day I went to the hospital ...

Stress is something else. The only way I cannot be stressed is different OTC pills and other random stuff.

Thank your boyfriend for arranging time with friends.

Also, Vitamin D is good. D3 is better. Also consider Omega 3, a probiotic, B Complex and B12. I'm glad you're taking care of your health and that you quit smoking.

And about the stress. Find some stress management techniques that work for you. We're all different.

Here are some ideas. Some work for me; others don't. You'll find the same. Some you won't be interested in; others you won't.

- yoga, stretching, etc. You already get lots of walking at work. These are more relaxing.
- a hobby, scrapbooking, adult coloring books, making a vision board, journalling, writing, photography, or other creative activities
- playing games
- listening to music
- spending time with pets
- getting a massage
- guided meditation or binaural beats (you can search on Google for both. You'll need stereo speakers for binaural beats.) or the Serenity Prayer,
- gardening
- sitting in the sunshine
- therapy
- etc

[Daisycat]

I just checked. It actually is d3. I also take b12 every morning since it helps wake me up since I’m not a morning person and 545 is early. I also just realized I am taking omega 3. Been taking magnesium for years since it’s helpful with my stomach issues. The stress is something I’ll have to figure something out on. Smoking used to be what helped but I can’t do that anymore. Although quitting did save me a lot of money so there’s that too.

[Mamabug]

Good. Yeah. You're taking some good supplements. I take a Magnesium / calcium supplement too. I think they need to be balanced so it's good to take them together. Fir me, it helps my night time urinary frequency.

And the stress. Yup; you'll have to do what works for you.

[smalltowngirl]

Life isn’t lived absent of difficulty for anyone, and for some there are incredible hardships. A successful life is not one of escaping hardship but of functioning well in spite it.

I appreciate this, Myoak. I'm trying to adapt to this approach of functionality. It seems I have wasted too much time waiting for things to change, get better, resolve, or remit, when I should have adapted and continued.

Right now, perhaps all you can see or hear is the thundering waterfall. It commands your attention and it is frightening.

We control what we can and go forward functioning the best we are able. Although it may be turbulent, there are seasons.

"There are seasons!!" Most definitely, there are seasons. The only constant I've found so far to hold true is how different symptoms are from person to person. No one seems to experience the same MS.

[Daisycat]

For me for now I think I am going to have to go back to my unhealthy denial phase. I still feel like I am mourning my "death". I do not know if it is harder for me right now since it is coming up on the year anniversary of when I lost my future but I do not remember it being this hard earlier this year. Of course earlier this year I was drinking 2-3 bottles of wine a night so that might have had something to do with it.

I am going to focus on losing 15 pounds no matter what. My weight is the only thing in my life I still have control of and I am going to at least be at a weight I am happy with. This curse has caused my enough disappointment in the past 11 months so denial is the only way I think I am going to be able to deal.

I'm not going to start smoking cigarettes again-(won't be in that much denial) , and I am still not going to do certain things I had planned on but I just cannot accept this as my life. Self medication and exercise and Netflix binging is my new life I guess.

[Daisycat]

I appreciate this, Myoak. I'm trying to adapt to this approach of functionality. It seems I have wasted too much time waiting for things to change, get better, resolve, or remit, when I should have adapted and continued.

I might be wasting time being depressed about this but I know that I cannot accept living with this thing for another X number of years. I just am begging the universe to have mercy and let this be a misdiagnoses. If my dreams of that are crushed I honestly do not think I will be able to accept having this curse for the rest of my life. Some people can deal with certain things better than others and there is plenty of crap I have dealt with but this is something I can't.

This is not a problem that can be fixed and no matter what I do I will never be normal or happy again. I keep thinking how just a year ago I had so much to live for and so much hope and so many dreams for my future... now my hope is to make it through the day without crying to much.

To all of you that can move on and be happy again after this curse you are a better person and stronger than me. I just cannot accept this curse and the more I read people's stories online the more depressed I get. Most end the same way... they talk about how they walk with a cane somedays or how they think slower than other people. My favorite was the one describing how this curse can pretty much affect any area of your body and going into great detail about what all can happen. And this was just from me trying to find some actual 0.0000000001% hope that I will be OK and happy again.

[gargantua]

I am going to focus on losing 15 pounds no matter what. My weight is the only thing in my life I still have control of and I am going to at least be at a weight I am happy with.

Cool. One thing leads to another, and getting in the shape you want to be in could improve your possibilities of not having major symptoms. It's all a discipline, and you do seem like you possess a lot of inner discipline!

[Daisycat]

Cool. One thing leads to another, and getting in the shape you want to be in could improve your possibilities of not having major symptoms. It's all a discipline, and you do seem like you possess a lot of inner discipline!

And I think one of the things that terrifies me the most is losing control of that and not being able to being charge of what I do.