How do you deal with MS and it taking over your life?

[DexterMorgan]

Hi everyone

I'm a female, 24 years old and overall I'm just feeling really down at this point. I'm still studying and it's really the only thing I'm doing in my life. Most of my friends I only speak either at school or through Facebook. My life just means nothing right now, I'm only debilitating and I never have a minute to relax and do something fun.

One of my dreams was to go to this festival this year and just relax for 4 days, not think about the MS but my parents are so strict they kept saying I couldn't go and now the tickets are sold out. So here I am again, just waiting for the MS to progress, studying and that's it.

I'm getting Tysabri which has left me with an inflamed jaw for literally a month and now also this huge lump/pimple in the corner of my eye. Looks like a stye tbh but it's been there for 2 weeks.

I don't know what to do in my life, I feel like I have no goal, nothing to enjoy anymore and the only thing I can think about is how I'm going to progress with the MS.

How do you guys deal with MS and trying to not take over your life?

[Mamabug]

Sometimes, MS does seem to take over. My strategy is simply to listen to my body, and, when it needs to take over, I guess that I let it. For example, I sleep ten hours each night and take 2 naps each day, because my MS body and brain require it. And, I went on SSDI in 2008 and volunteer 10 - 15 hours per week, rather than seek employment, because that's what I can handle. I've learned to say no to people when what they ask of me is difficult physically or feels like it would add unnecessary stress to my life. And, I don't feel guilty about saying no when I need to.

I wonder, for you, about not allowing your parents to take over your life. I understand that some parents are strict when parenting minor children. But, at age 24, IMO, your parents should not be making decisions regarding whether you attend a concert or not. Or other decisions either. It is, surely, OK to seek their opinions and advice. And, then, it is your job, as an adult, to make your own decisions, based on what you believe is in your own best interests.

You didn't say whether you live independently, or with your parents. But, perhaps, if you are living with them, it might be time to consider whether you can afford to live on your own, even if you need to apply for low-income housing and / or other social services that may assist you to make that possible.

[msgijo]

Hi DexterMorgan.

I don't know how long you have been dx'ed, but I remember when I was. For a little while (a month or so?) I simply carried on with my life as usual. Then it hit me. And I gave up on living for almost a year.
I would no longer do the things I loved to do - like buy houseplants or flowers to work with in my yard, because I saw it as just making more work for somebody else to have to deal with. I was going to school at that time and I just stopped - after all why bother when I had MS?

I think that the fact that I had children to raise helped pull me out of the funk. One day I realized that I wasn't living - I was practicing dying .
So I started doing my thing again and had over 15 years of good life before disability started setting in. And it was not like I just woke up one day totally disabled - I can still do most things. I just have to modify HOW I do them, and take my time.

Yeah a little more difficult, and NOT what I was before, but still a good life. Concentrate on what you like and what you can do and get busy living again. MS is not a death sentence!

[KatieAgain]

DexterMorgan

I have been reading through your posts. I think you are sad right now, and scared and certainly unsure of your prognosis. Very understandable...MS is a scary disease and quite unpredictable. And it affects all of us in very different ways...especially when you get it young.

I was able to go about 8 years without MS really affecting my life that much. I am glad I had that time because I did the "bucket list" thing...several times over. I accepted the MS as part of me and it does pretty much define me. Nothing I can do to change it. So I had to adjust to it's schedule and I had to lower my expectations a little. And now...even more.

No matter what flavor your MS takes on, set some goals, start a hobby, and if your want to go to a concert, you go! You don't wait until tomorrow if you can do something today. Who knows what tomorrow brings...for anyone.

When things do go wrong and they will...be flexible enough to change the World you are living in. Change it to fit your needs. I tell people when I got dealt my hand of cards I got four Jokers and one Ace. My goal is to keep trying to play that Ace as much as I can. One of my jokers got played this week and I got ON. Did it change my plans? Absolutely. Was I upset? Yes. But I hope my Ace pops up and the ON completely resolves.

As far as your parents...educate them...talk to them over and over if you have to. You will need them someday, but don't let them squash any of your fun. I hope they are just being protective.

Live your life now...write that list!

[Sir-Voor]

How I deal with my MS has changed over the years, and although MS has put up a good fight at times trying to take control of my life I have always won that fight.

The first few years I was in semi-denial, I took my meds, learned what I could about MS (which was much harder in 2002 than it is today) and place it out of my thoughts the majority of the time.
At some point I realized I had two options, curl-up in a ball and cry “Why ME!” or Fight it and look inward and Ask “Why Me?”.

Yes MS ended the path I was on, but I control the new paths it has taken.
Don’t assume to path you were on, is the path you’re meant to be on.
God guides us in ways that few gain the enlightenment to understand.

For example here is a small part of my journey;
Before my MS Dx; I thought it was bad news when I got laid-off from high stress, long hours and long drive job, along with 20% of the company, and then after not finding work for 5 months and saving running low, I lucked into a low stress, easy hours and short drive job. It was a pay cut, but I was working and I always been able to work my way-up.
A little over a year later I had my first noticeable symptom (3 short muscle spasms about a week apart) because my new job had good health insurance I made a neuro appointment for what I thought was a pinched nerve.
Surprise Surprise Surprise I got MS! and my getting laid-off was the answer to my prayers a year and a half before I knew my life would be taking a new path.
My old path was high stress, inactive, and was a path to an early death, on my new paths I have grown spiritual and have gotten healthier.

We are here to grow and learn, so embrace your unique path and use it to become a better person.

As Janine Shepherd states; “A broken body isn't a broken person” (Search for video of it)
What make a person is their spirit.

If your feeling emotionally down Jane McGonigal’s SuperBetter may help.
I was able to find my post-traumatic growth before and with-out it, but I know it has helped a lot of people. (Search for the video of “Jane McGonigal: The game that can give you 10 extra years of life” and don’t be fooled by the title or the first few minutes of it.)

I hope this post helps you embrace your new path.

[Redhead]

Dealing with MS

Hi everyone

I'm a female, 24 years old and overall I'm just feeling really down at this point. I'm still studying and it's really the only thing I'm doing in my life. Most of my friends I only speak either at school or through Facebook. My life just means nothing right now, I'm only debilitating and I never have a minute to relax and do something fun.

One of my dreams was to go to this festival this year and just relax for 4 days, not think about the MS but my parents are so strict they kept saying I couldn't go and now the tickets are sold out. So here I am again, just waiting for the MS to progress, studying and that's it.

I'm getting Tysabri which has left me with an inflamed jaw for literally a month and now also this huge lump/pimple in the corner of my eye. Looks like a stye tbh but it's been there for 2 weeks.

I don't know what to do in my life, I feel like I have no goal, nothing to enjoy anymore and the only thing I can think about is how I'm going to progress with the MS.

How do you guys deal with MS and trying to not take over your life?

I cope with my ms by adapting to the changes I need to make to make my life easier with ms. I have secondary ms and I am seriously worried about how much longer I can remain walking. I felt I needed to respond to your post since you are only 24 and I am 55 and 9 years into the disease. When I used to go to ms support meetings and saw others in wheelchairs I thought I'm going to be one of the lucky ones and my ms will never take me to their level. Wrong!! I've tried to get in on the stem cell trials but they are only taking rrms who have relapses. So many rrms patients have been successfully cured of their ms. Have you been reading about the trials they are doing in Chicago IL with Dr. Burt? It isn't easy to go through the treatment, but to have your life back is worth everything.

[KatieAgain]

So many rrms patients have been successfully cured of their ms. .

No. There is not a single MSer, let alone a RRMSer that has been sucessfully cured of this disease. Although Dr. Burts trials offer some potential and hope a cure has not been found. With time, there might be hope this statement is one day true.

[palmtree]

You are on Tysabri. That's great! There is a good chance you won't have any progression for awhile.

I'm sad that your parents wouldn't let you go to the festival. If there will be one next year I hope you can convince them how important this is to you.

It's so wonderful to hear from someone from Belgium. Keep writing to us.

[Thinkimjob]

Try not to worry too much. Tysabri is pretty good - 70% reduction in flares.

Your parents are probably scared to death.
I've had this for nigh on 20 years. I can't pretend it's good, but I can still work, and I can more or less walk. Nothing flash, mind.

I was 28 when officially diagnosed, had it a few years before that. I thought it was the end of the world, for quite a while.
I wasted ten pretty good, in retrospect, years worrying about what might happen. You wait long enough, and it probably will happen. None of us live forever.

You do your best, and that's all anyone could ask.

[REG53]

I draw strength from God. That's what gets me thru each day.

[JerryD]

I am with you, REG. Faith, trust and hope gets me through. i just say a prayer because the medical world is useless to us MSer's. Good luck to all.

[hunterd]

I do not dwell on the negatives, sure sometimes they can be overwhelming, I just remember to tell myself that every cloud has a silver lining. If you take a moment and look at whatever, you will find most often that there is some good and some bad.

[DexterMorgan]

Hi guys

I want to thank everyone for their response in this thread it has really helped me a lot. A loooot! It's really nice to read some other opinions about this, also from older people as I'm still young. Really appreciate the advice.

I'll be trying some yoga classes next week, I'm sick of - as someone stated here - "dying" mentally and emotionally and I want to start living. It's going to be exciting though, I still have the huge bump on my eye so I hope they won't look at me weird. First impressions and all haha.

I've also tried the "Superbetter" game that was advised here, it actually has some really helpful tips and has been helpful to put some things in perspective.

Just thanks again, the responses mean a lot to me!!

[DexterMorgan]

I cope with my ms by adapting to the changes I need to make to make my life easier with ms. I have secondary ms and I am seriously worried about how much longer I can remain walking. I felt I needed to respond to your post since you are only 24 and I am 55 and 9 years into the disease. When I used to go to ms support meetings and saw others in wheelchairs I thought I'm going to be one of the lucky ones and my ms will never take me to their level. Wrong!! I've tried to get in on the stem cell trials but they are only taking rrms who have relapses. So many rrms patients have been successfully cured of their ms. Have you been reading about the trials they are doing in Chicago IL with Dr. Burt? It isn't easy to go through the treatment, but to have your life back is worth everything.

I actually haven't, kinda gave up on all the news about MS. I remember when I was newly diagnosed I'd research literally everything but I've outgrown that phase. But! This literally put a smile on my face, sounds very promising! I did read however that with the Tysabri it's difficult to get this treatment because of the risk for PML. Plus I'm not in America so I'd have to wait I guess.

[drmarc]

Truth or Lies

Do you want the truth or what others tell themselves to feel better. MS is a horrible disease and when you start to progress it becomes even more horrible. There is no upside to this disease and when the MS Community stops conveying that this disease is anything but a nightmare, maybe the world will listen and find a cure.

Even before that German plane crashed in the Alps, I used the analogy of having MS to being in a plane that is about to crash. You can't stop it, you can't make lemons out of lemonade, there is no hope that you will be saved, and as every second, minute, or period of time goes by you get that much closer to your death.

MS or as we are facing SPMS is a daily struggle in just getting out of bed, putting on a pair of socks, getting to the bathroom before it is too late, coping with excruciating neuropathic pain every second of every minute of every hour and no drug can stop it.

We have lost our life, the life we planned, and the life we worked so hard to have. We, like those in the plane, are terrified, angry, helpless, and in a nightmare. Anyone who tells you that having MS is "...not that bad. Just use a wheelchair," is lying.

It is about time that those with MS and those who love those with MS stop perpetuating the myth that having MS is not that bad, that having MS is something you can adjust to, that having MS is something you can live with because it is NOT!

I hope you can handle the truth.