Not what I wanted to hear

[katie4242]

A friend of mine from church, upon learning of my recent diagnosis, recommended that I meet with her good friend who has MS, has had it for 6 years, and is doing "quite well."  I was chomping at the bit to talk to this girl.  Someone who is my age, and lives right around the corner, and was "doing well"!  I happily drove off to the meeting today, certain that I was going to have all my fears assuaged after talking with her.  
Well -- I guess I'm an idiot.  While she is doing "quite well" I don't want her life.  I guess I foolishly wanted her to say "yes, I have MS.  I take such and such and everything is the exact same for me."  This is not what she said.  She had a lot of complaints, etc. ARRGHHH!  She was completely nice and I know that I should just appreciate her honesty.  Maybe I just wasn't ready for the reality of it all.  I have 3 little kids, a job, a husband, I'm active at our church, I have plans for my life.  I don't have time to be "tired," and I don't know how to "take it easy"!!!  This girl kept talking about how if you don't "take it easy," you might not know it, but you are doing irreparable damage.  Is this true??  I've always been the kind of person to take hold of adversity and power through it.  

Sorry - just needed to vent
Katie

[tonyad]

   Hello,
  
     No worries, we all Have to vent sometimes :)   And that is Not such a bad thing but rather a good thing because we do not want to keep everything bottled up inside.

    Sorry that your meeting caught you 'Off Guard."    This will happen from time to time even when just being out in a public place.  In my personal opinion, some folks feel the need to tell others (perhaps their way of venting) how they feel in great detail!

    Kinda reminds me of how one female will tell another about how horrible and terrible childbirth is and then there are others who just breeze right through it.  Hope that make sense.  Just ones own perception of there own illness.

     You know what really catches me off guard.....Is when someone askes why I am using a cane, I tell them I have MS then they tell me that their Aunt, sister, cousin, grandmother (and so on) had MS..Then I ask how they are doing and they say "Oh, they die!"......I think to myself...WOW!

    NO worries because I think that your Positive attitude and strong "Will"........is going to help you in many, many ways!  There are so many folks who get their Dx, then just kinda 'Give Up"  and "Give In"....So, good for you having the attitude that you possess :)
  Just rest if needed and GO when you can!

Take Care,
~Tonya

[Erin0313]

   Sorry that you had such a let down with your MS "buddy". I can't stand it when people compare me to others with MS or act like if I did exactly what that MS person did I would be as healthy as her! It makes me angry that some people while trying to help can be so goofy in their thinking.

I don't usually want to educate them so I just listen and thank them for caring. It's up to us to decide what things we will take or try, do or not do! Everyone's MS is theirs and we are all different.

I too raised 2 children now 24 &22 and worked, coached soccer and stayed very active in school activities. Don't start thinking about what you might have to give up. Stay positive and IF things change you will know when you should re-evalute which activites you should cut back on.

Hugs,
Erin :)

[jean_619]

I was dx'd 7 months ago and in my experience, I've learned over time how my body works -- what the triggers are and how I can manage them so that I don't get flare ups or if I do, they are not as significant.  

For example, heat bothers me, so I don't spend a lot of time outside in the heat -- and instead go out at night or do inside activities.  Lack of sleep is bad for me -- so I've taken an earlier bedtime.  And finally, stress is the big kicker for me -- so I'm trying to learn some stress management techniques.  In the end, I'd say that I've slowed down a little -- but just enough to avoid a flare up.  

I have huge fatigue problems that slow me down, but I've just accepted that I'm going to be fatigued sometimes, and just go with the flow.  I take it day by day, and just learn more about my body and how it reacts.  That's what keeps me having a "regular" kind of life.

What I have done is take significant steps to get healthier.  I see a trainer who helps me not only with getting in shape, but also works with me to improve my balance.  I'm trying to work on eating healthier too.  The more I feel like I'm taking control of my health, the better I feel about myself and my outlook.

[jensequitur]

Doing well is relative.  I would say I'm doing well right now, but I wasn't doing well three years ago.  That girl was right - the most important thing is really not to push yourself.  I know you want to pretend like this diagnosis doesn't exist, but it does.

But like Lulu says, get on with your life.  Do as much as you can, when you can.  When  you can't, rest.  And don't be hard on yourself when you can't.

[Lulu54]

Sumana and Sarah have shared excellent words of wisdo and I have little to add to those thoughts.  I would say, however, that there is nothing to the  thought that if you push yourself too hard you will do permanet damage.  I believe that is pretty much a falsehood.

If you push too hard and get overheated and have Uthoff's, then yes your symptoms will act up until your body cools down.  If you push too hard and get tired, then your body will act up until you stop and rest.  We tend to recover in a short time from both of these things.  


That may be true for those of us with MS, but it pretty much is true for all people.  Note: The tiredness I'm talking about  is not the same as MS fatigue, which is an entirely different problem.

Please get on with living your life as you can now, and don't worry too much about the future.  It could be that the future you think you may be facing will never materialize.  This is one unpredictable disease and none of us know how it is going to end for us.  It's healthier to not dwell on the possibilities.

be well, Lulu  

[Sparkysarah]

Hi Katie

I don't think I have me you before at least there is a good chance that this electronic meeting has a better chance of making friends than when you met your neighbour. I am 12 years older than you although I have never found age to be a barrier, I llive in the Uk and I have yournger and older friends. I also have 3 children and can hardly believe that they are now 20, 18 and 15 and it seems like no time since they were under ten.

I was only dx'd 6 months ago with RRMS and my consultant says I am "doing well". Personally I think there is no point comparing how we all are as what is important is how you feel yourself.  I can really empathise with part of me wanting to meet someone my own age who is a positive thinker and just getting on with life. I have stayed away from support groups and other such meetings as I am not ready to face the reality of seeing people in wheelchairs yet as I don't need a reminder that this is a possibility in the future.

I beleive in being positive, getting on with my life and enjoying now and the present. I try and surround myself with friends and family who share my perspective. I am honest about how I feel and the only thing I have learnt is to listen to my body and if I am tired I know that I must not overdo things. I try and avoid too many late nights and do not drink as much as I used to (but this is bad thing) However I do not want MS to rule my life and I am certainly not putting anything on hold.

So vent away and I would get on with enjoying your family and don't worry about what anyone else tells you..listen to your own heart and instinct but just make sure that you have support in place if you need it..three young kids can be very demanding and tiring..but  you have the gift of three children so enjoy them.

With love

Sarah x :)


  

[katie4242]

Thank you, thank you, thank you!  I think I would rather have had coffee with you this am!  Your can-do spirit is an inspiration!  Again, thank you!

[Sumanadevii]

Katie, I suspect I had MS for a good twelve years before diagnosis.  I had still a houseful of kids..some middle, some high school and some college age.  I worked.  I did all the household repairs, maintenance, lawn (a full acre), gardened, cooked, baked, laundered, active in all PTO, PTA, etc and an artist to boot.  Today I understand why I slowed down.  Today I understand why I was so tired.  Today I understand why the back pain was unbearable.  However, there wasn't a day (until these last three years) that I wasn't able to do it.  With treatment?  I believe I would still be that active!!!!  

I think you will find days you do have to push.  I had no "reason".  I just assumed I was getting older...lol...and couldn't keep up as well so I pushed myself and hard at times because I thought it wasn't the fault of my younger children that they had an "older" mommy.  I remember going to award nights or performances at my children's school in the evening after work and feeling like I could hardly make that walk into the auditorium.  I did find some nights that I would take an hour of sitting before getting that huge meal on the table but it always got done.  

No, I believe because you are getting treatment, you won't find yourself unable to care for your family.  Some people, Katie, are just negative.  She may even have a more advanced form of MS than you.  Who knows?  I don't think comparing yourself to her situation is not helpful.  

Keep your mind on the positive.  You are in treatment.  Sure there will be bad days.  Sure you may have to push.  But I wouldn't be shy about telling my neuro if my days became unbearable and I needed some meds to help.

I have so much respect for young mothers fighting this battle but I think your thought process is wonderful.  You want to continue caring for them and that is more than half the battle.  You will " WILL " it to be so!!!!