JUST NEED SOME ENCOURAGEMENT

[Dreams008]

Apparently, I was just informed that my family talks about how I'm not the most pleasant person behind my back. My grandparents and my aunt, who act so happy to see me in person and give me love, call up my mother and complain about me.

Within two years, I've gone from walking to now falling frequently, in a scooter, reliant on a wheelchair, and paralyzed on my right side because of a lesion in my spinal cord. I'm 35 and I'm becoming more disabled every day.

I've been diagnosed with PPMS. From the sec my feet touch the floor each morning, I'm reminded of my MS. I fell on Christmas day and hit my head against the wall. My mother told me today, that when it comes to me needing more assistance, she does not want me living with her and her husband, but that I need to think about assisted living/nursing home living arrangements.

I can't explain how alone I feel, knowing my family acts one way around me, but really feels something else. MS has been real hard on me and I'm doing the best I can.

They just don't understand when I say I don't feel well or I'm tired. They respond with, "I'm tired too." I'm scared because my body is just getting worse every day. I can't walk, can't use my right arm/hand/fingers, choke when I swallow, falling much more frequently and I'm unable to get up.

I'm sorry I'm not my happy, normal self, but inside, emotionally, I'm hurting. I pray to God that He keeps me strong enough to not throw the towel in. I'm afraid to reach out to friends because, for all I know, they probably feel the same way as my family, putting on a front.

I just needed some encouraging words from those of you who understand. I feel all alone.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KatieAgain]

It is hard when family abandons you. Keep in mind...its not you...its their character. Anytime family abandons you during a medical crises...you are going to need some professional help in dealing with it.

My Mother is a little "mean". She would take care of me but at a tremendous emotional toll.

So you have to ask yourself, what would you do if you did not have a family? You need to come up with a game plan.

First thing I would do is get to the Neuro's and tell them your situation. Ask for PT, ask for OT, ask for a Social Worker. Help yourself get somewhat strong so you can remain somewhat independent.

Modify your home immediately. Get rid of the clutter and organize, organize, organize. Make your home a place that is enjoyable...make it your castle.

Get yourself an in-home hobby that you can do. I too was young like you when I was diagnosed. I learned how to quilt. And I still do it today, 16 years later even though my left hand is botched up.

Make a list of everything you need to live independently at this point and get your Neuro and a Social Worker to help you.

There are people with PPMS living alone with MS and are independent. But it takes planning and work.

Take your family and the Pity Party and put it on the back burner for now...they can be dealt with later because it does not sound like time is on your side.

Instead, put YOURSELF first and no one else and do whatever it takes to make a new and independent life for yourself.

One last thought...Service Dog...immediately. A four-legged friend is usually better than a two-legged kind. They don't complain or talk about you behind your back. I too live in Florida...my understanding is there are a few organizations here that provide Service Dogs for free...your local MS Chapter should have info.

Here is to hoping the best possible outcome for you.

[rdmc]

Hi Dreams,

I'm sorry to say but folks who don't have MS hardly ever understand. They don't live in our bodies, so if we mention a symptom, like fatigue, they relate by comparing their understanding of fatigue to us. You know what you're experiencing is not the same as regular fatigue, but they don't.

Sometimes it helps me to think back, before I had MS and suppose a person expressed to me the symptoms I now deal with, I wouldn't have understood because I had no point of reference.

That strategy works for me and helps me understand how others react to my symptoms. Best bet is to post on here, because there are lots of fellow MSers who do understand.

As far as your family talking behind your back you have two choices. You could confront them about it, but that leads to a lot of stress and just more hurt feeling, IMHO. Or you can just ignore it and once again remind yourself that they have no perspective in the matter.

As to feeling alone, or being afraid of what the future holds, in your situation that's a perfectly legitimate emotion. Talking to a counselor, or contacting your local NMSS, might be a good idea. Tell them how you're feeling. It helps if you can unload to a real person.

Sorry I don't have any better advice, but getting others to understand what you're dealing with is just a hard thing.

[4boysmom]

Follow Katie's advice. It is golden!

[dyin_myelin]

If I were on the phone and they said that, I would let my "phone testicles" descend and say, "this isn't ABOUT *you.*" I wish I could throw down in person, but usually I turn into an insular little heap of speechless misery.

It was easier to hurl back a sarcastic invective when I became a strong, independent woman. Now, I have to remind myself that even though I am becoming more weak and vulnerable, my family will still be the miserable people that they were and are. Vulpem pilum mutare, non mores. When I talked about depression in college with my father, he would interrupt and say, "you don't have a REAL illness. You should go to the ER and see people who are REALLY sick." Well, guess who didn't even call when he was told it was a brain tumor no less.

I used to tell myself I was my own best thing, and came to believe it. And, good things started to happen. Now, it doesn't seem like there's any good thing left, but I know where I won't find it. Katie is right, strangers and social programs should be where you direct your valuable energy.

[pennstater]

Hi Dreams,

Sorry to hear that your family doesn't get it. Aside from the disappointment and hurt, it causes stress that you don't need.

I agree that seeing a thetapsist is great place e to discuss this, give you skills to cope with a situation that most likely wont change.

Katie's suggestion of preparing for your future may also help eliminate some fears. Taking steps to plan should give you a little sense of control.

Please take care.

[ChristopherG]

Hello Dreams008

I never married (my expectations where unrealistic) so at age 37, I had MS with no chance of marriage. I modified my home to be wheelchair friendly. (that day hasn't come yet) My only family is my sister, we never got along as kids, I can't confine in her, because she's a "GOSSIP" always telling every thing to friends and family. When she comes over and finds something out of place, she'll fix it and say out loud "If it weren't for me....", I bite my tongue. I attend MS support groups, but there's never anyone there that are feeling lonely and isolated. So I do know how you feel, your not alone, and I'm sure there's more than just us two. I'm on disability and my only touch with reality is through MS websites.

[iamziggy]

Dear Dreams, I agree that most people without MS, don't really understand. I am getting concerned for the future, because I am in a wheelchair and my, caregiver, husband has Alzheimer's and I often wonder what will happen to both of us. We are both progressing and it feels like the perfect storm about to happen. I would consider assistive living, but can't afford it. We are both on Medicare. I have a loving family, but no one is prepared to take us in. It feels very frightening at times. I am going to pray for all of us that God will direct our paths. There are a lot of people that feel alone and understand what your feeling. I agree Katie gave good advice that has me thinking. Hang in there.

[Waydwnsouth1]

I have read other posts where family members have either abandoned or talked down about a family member with MS. For the life of me I cant understand that. Is the family just that uncaring or are they just totally uneducated about MS.

It hurts me when I read these type of posts. I agree with the other posters. Start taking control of your life. Do everything you can to help you live more independently. To heck with your family. If they don't need you and your problems you don't need them.

Contact your Local NMSS and seek their guidance. They have been a great help to me. Whatever you choose to do, do it for yourself and no one else. Best of Luck to you!!

[poppydarling]

Then I am here to give you that encouragement, dreams!

I'm sorry that you are going through all of this, and without the support you need. The advice here is really good, but having experienced a similar thing with my family, I would say first grieve and process these massive losses with the help of a professional counselor.

Before you can make plans or consider the future, you need support and perspective to process the emotions that accompany such major life losses and transitions. Once you feel supported and cared for, some of these issues will work themselves out much more easily. Hope you check back in and let us know how you are doing. You are not alone!