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How to Handle

In addition to the effects of MS and what it takes from you......and dealing with all it does to you....how do you include family/friends in the MS process ( tests, different things it does to you, the physical & emotional or whatever)   when you want or need them and they all seem to run  cuz ya got the "plague" or something.....how do you include them or help you with whatever your going through:(     its tough enough to deal with the BS of MS.....its even tougher to deal with it solo:(
14 Responses
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1655815 tn?1306930462
Unfortunately we cannot make people "support" us the way we need it when we need it. Some people are so selfish that they cannot see beyond the tip of  theier own nose. Fortunatley there are people in this world who are willing to help you whenever & however they can, and I gues the difficulty is findin those peopl if they are not readily availbable to you. While I have reach out to any local MS chapters or support groups, maybe you should check into any programs in your area. You may make friends and develop a solid support system that way.

I have been very BLESSED to have a strong, solid support system. My job is very supportive; my family and friends are as well. My dad told me to stop trying to be so independent & let the family help. LOL... the funny thing is, my husband is probably the least supportive! He thinks he is, but NOT! I just ignore him & rely on the rest of my family & friends. He will do whatever I ask; my problem is I don't feel like I should have to ask for EVERYTHING I need. But again, as far as my MS goes, he is insignificant. Everyone in my circle is wonderful. I have not had mobility issues since '97, but I deal with a lot of fatigue and nueropathic pain. I'm constanntly getting stabbing & electrical shock pain,,,,,So frustrating.....

But again to answer your question, focus your efforts on those that are willing to help, and they are out there. We just have to find them....

Hugs,
lilbit
Helpful - 0
1382889 tn?1505071193
My challenge has been that my friends and family forget I have MS.  When I decline a summer mission trip (long hard HOT work) they complain. Cannot expose myself to overheating I tell them. Oh, come on, you are being too sensitive they tell me. My personality was always to be the go to girl, the one who volunteered first and finished the job no matter what.  Not anymore.

Maybe b/c I don't have any outward physical symptoms people look at me as not having a progressive disease. That's ok with me actually.  Until or unless it starts effecting me physically, I am going to live my life as if I don't have any limitations all the while making sure I take care not overdo it. It's the not overdoing it that throws people around me off.

I make no apologies for having what I have.  I will however take care of myself and not put myself into situations that will exacerbate the MS. What people think really doesn't matter to me.

Now that I think of it, I one relationship has changed quite a bit b/c of my MS. Another mom at my kids school who I have worked w on a lot of projects just would not let me bow out of some activities last fall when I was just a few months out from dx and selling/buying a new house. I told her I could not participate in an event that she thought I should as team mom be in charge of.  We actually kind of got into a verbal sparing match. She kept telling me I could do it. I kept telling her I knew I could do it, but didn't want to and I wouldn't. She hasn't spoken to me since.  The impression I got was that she thought I was a wuss and needed to suck it up.

My point is we all have to make our own way. We cannot be responsible for what other people think.  And truth be told, everyone is really acting they way they always have, it is me that has changed. I will not push myself anymore. Instead I am proactive and say no, and that has been hard for others to deal w/. But again, not my challenge, it's theirs.

Julie
Helpful - 0
Avatar universal
hi.I was a first level nurse of some 33 years until just over 5years ago I was diagnosed with multiple sclerosis.(first and only mild symptom when aged 26years) I too went through horrific poverty.2 boys at home, no job and no money etc. I was lucky my friends stood by me.Shame my employer did not but that is the way it goes when you get a label. I am doubly blessed as my ms has only just had a relapse that caused the rare symptom of a partial hearing loss that will result in stone deafness. Does any of this worry me? No. Sadly I have far worse things to cause me concern but all will be revealed with time and then I can laugh again. Now I just smile occasionally and get on with the most outrageous things.Like trying to lift stones to build a wet stone wall (will be like the house that Jack built but if it stays put who cares)  and repair a pigsty at the bottom of my garden-no I have no four footed friends but might be a good idea!. I will turn it into a sun house with plenty of squealing and laughter when anyone care to visit and the cork can be popped to celebrate my new quirky creation with no roof to watch the stars and drink in the moon light. So look for happiness in the smallest of things and never allow yourself to be put down.
(A small thought for you. Since I lost my job I was on three occasions minding my own business and just happened to save three people's lives! So you will never be 'off duty')  
Helpful - 0
738075 tn?1330575844
My DH has come to two neuro appointments with me, but that's as far as that goes.  Alex's comments really resonated with me.  DH does the heavy lifting as far as household chores go, but the MS stuff....I feel like I'm trying to protect him from a lot of this, too.  

My whole family knows, as do my co-workers.  Everybody treats me like a delicate glass sculpture, which on one hand, I appreciate, but the grrrl in me HATES it!!  I've always been physically very strong and athletic, and that's gone, now.

I feel like one of the best parts of our marriage is that we give each other lots and lots of space to achieve our own projects, and we sort of come together in the middle.  But since none of us are mind readers, we DO need to communicate our needs and wants to each other.  He's all too happy to help me out when I ask him to.
Helpful - 0
352007 tn?1372857881
I don't know what I have but whatever it is, it has kept me out from the work force, doing the one true thing I thoroughly enjoy -- nursing, since August 2010.  Not only did I gain the satisfaction of caring for others, I also had financial independence.  Now this was ripped away from me.

There were days and even weeks that I went without a penny in my pocket. No gas for my car, eating sparingly to make things last which included a bag of frozen vegetables for lunch.

During this course of whatever I have, I adopted myoclonus which makes people look at me differently.  My coworkers at the hospital at my last stay in early April treated me differently and even looked at me differently.  My significant other kept pushing me to go back to work no matter how debilitating the fatigue was, no matter how numb my left leg was that had given me a limp.  No matter how nauseated, no matter what pain I was in because we are in a monetary mess.

I will be going through this alone as far as family and friends.  As they rest their heads on their pillow at night and sleep soundly and peacefully without pain or whatever neurological issue that may arise for "me", I continue to go through on a daily basis the reminders of what a neurological disease can do.  How physically and mentally it has incapacitated me, how it affects the people I care about around me, how they treat me, how they view me, that my career that I worked so hard to obtain in late adulthood, is right now at an end, and most of all, how it interferes with my life to be a productive adult.

I am thankful that I have landed here in this community, because as sad as it is, "you're" all I got.

So thank you all for all of your support, no matter what I have.

Lisa

Helpful - 0
1453990 tn?1329231426
My friends, family, employer, coworkers, neighbors, etc. all know.  My partner and I made a conscious decision that we were going to treat this like a broken leg that never goes away.  My fatigue, dropping stuff, and falling is the "physical manifestation."  It is my "cast" on my broken leg.

Just about everyone asks how I'm doing.  I think people "mirror what we show them."  If we act like it isn't there, so do they.  My hands shake and I end up wearing my coffee.  My hands bounce up and down, I drop plates and glasses.  It is not like people can't see.  I fall and now people just ask if I'm OK.  They have learned that these are things I just "do."

I have learned not to be apologetic about it.  My leg has given out in front of clients and coworkers. There is a saying that "Closets are for clothes, not people."  So I just don't hide my MS.

Bob
Helpful - 0
704043 tn?1298056844
the bs of ms  how true ,  gosh im like the rest here and you- hide what i can, they do love us i know!!  but they-dont- want to hear it. sometimes the truth hurts!  so  i do what i can enjoy what i can, and dont complain, i have learned that a long time ago, wouldnt it be neat, really neat if we could all meet each other!!.-thats what we need.  hugs!!!!
Helpful - 0
Avatar universal
AMO
hi spitfire,

my heart goes to you and anyone without thhe much needed support from others.
I     amm so fortunate to have the most incredible  support  system. THankfully, or i would be in care facility.

I never was one to ask for help befoore. I learn now I point blank ask for what I need. This has been one o f my hardest thing to learn how to do and accept.
I have losst a ffew freinds along the way. I just figure they are  missing o ut on some wonderful lifes lessons and maybe one day theu come around.


Have you opened up and hoonest and frank discussion , letting them know how you feel ?
It  can be the difficult certainly. If nothing  else, you havae done all youu can.

Hang in there spitfire,
amo
Helpful - 0
198419 tn?1360242356
Hi there,

My hubby is my best friend, but I deal with my MS mostly solo. No-one recognizes it publically in the house and if family is concerned, we don't discuss it for the most part.

Knowing they care, lifts weights off my shoulders - I feel like I can do anything just so long as I feel they have my back.

I know this would change for me if I were disabled though. Tell us more about where you are at with the mobility that way we can get some more specifics for you. I know you've been here but I'm forgetting how far your MS has progressed.

(((Hugs)))
shell
Helpful - 0
1394601 tn?1328032308
Darling, what was I thinking?  I included your father and not you or your brothers?  There is no excuse.  You do know.... I know ....We know.... All of us know how supportive you have been...EACH of you!!!!!!!  You laughed when you called but I could feel the hurt.  I am so sorry.

To board members, I want you to know how blessed I have been...I could write a huge list of the check ins, the scooter one bought, the son that sanitizes my baths and kitchens, the sheet changing, the yard help, the painting.  How I missed adding my sons???...I dunno.  I wished I could blame it on MS but we know it isn't on my brain.  How about just a not thinking mother....So please add my sons to the list above....

Hugs, Sumana
Helpful - 0
1318483 tn?1318347182

I use the "Spoon Theory" by Christine Miserandino when dealing with friends and family.  This is written to explain how she feels with Lupus, but it also works for MS and Limboland.

I have printed it out and most of my family and friends have read it.  It has been very helpful for me and I know several of our forum members who refer to it, as well.

Here is the link:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Hope you find this useful, as well,
Addi
Helpful - 0
1394601 tn?1328032308
Except for my husband that has been at my side through thick and thin and ONE friend most have gone on with their lives as if nothing has changed.  My body looks the same to them.  They have no interest in understanding what MS is or how it effects me.  

My advice is to expect nothing and be shocked when someone gets it.  Other than that make clear boundaries that they cannot cross with you.  In other words, you make an appointment for us to do something.  I am too fatigued to meet that obligation.  I cancel.  If you don't like it, don't make plans with me.  You come to visit.  A few hours later I am too tired to sit up.  I will go off to bed and I won't feel guilty.  

It sounds self centered.  I don't much care.  I tire of the not understanding and I will take care of myself.

Hope this helps.
Helpful - 0
667078 tn?1316000935
That is a hard one. I love my husband and he is great, but I do the MS alone for the most part. I go to the Doctors alone. He does not want to drive me all the time when I can't drive. I even hide my pain as much as I can. We went to a relationship workshop for couple the NMSS had in our area which helped. He did not ask for MS anymore than I did. His dreams have changed too because of me. He can't change jobs because we need his insurance. A big part of our budget is medical. He is the sole provider. He does more chores which is great. Sometimes I feel we lead two separate lives and he probably does too. I try to empathize with him. There is no way he can know what it is like to live with MS. He naturally blocks me out which is a coping mechanism. I naturally try to protect him from what I am really going through which is confusing to him.

Alex

Helpful - 0
572651 tn?1530999357
That's a tough one, spitfire.  You can lead a horse to water, but getting them to drink is sometimes impossible ....  same with our family and friends.

Have you tried to include them in your doctor appts where they can listen first hand what the doctor or nurse has to say?  

Have you specifically said to them that you could use their support?  Sometimes we think our family and friends should just know the right things to do or say, but they are clueless.  

And to ask another important relationship question - do you only "take"  in your relationships or do you also give?  Are you the kind of person you would want to be around?  It is so easy to get wrapped up in our own problems we forget that other people have their own issues.    


You are right - this is one disease you don't want to do alone.  We're here to talk through all of this with you, do a bit of hand holding, and share joys and sorrows .    I hope we'll see you around, Lulu
Helpful - 0
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