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Family and Friends | La famille et les amis

Started by silverbullet305 at 03-05-2010 10:50 AM. Topic has 6 replies.

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   03-11-2010, 8:25 PM
Doug_MacAulay is not online. Last active: 7/7/2010 7:54:24 PM Doug_MacAulay



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Re: Any Advice???
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Ian,

So nice to meet you. Kootenays, that's sort of near Banff isn't it?  I love the rockies.  I took a trip from Calgary to Victoria two weeks after my diagnosis.  I got a lot of perspective out there.  BC was such a great place for nature walks and relaxing.  A bit warm though for me I found.  But it's probably cooler where you are?

Anyway, glad you are on the forum with us.  Pull up a chair, grab a coffee and let's talk.  :)

Thanks Mon, I just spend more time listening and thinking about what people are saying before I say anything back.  Not really that amazing when you know my secret, is it?  ;)


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   03-11-2010, 7:38 PM
mlecompte is not online. Last active: 8/31/2009 1:52:19 PM mlecompte



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Hi Ian, nice to know your name. Told you Doug is amazing. He can really reach u deep down inside and make you think. So hope u had a nice day and keep in touch. Here is my email: chair45bankw@yahoo.ca. Email me anytime. Take care
Monique
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   03-11-2010, 3:57 PM
silverbullet is not online. Last active: 3/11/2010 3:34:36 PM silverbullet



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Wow!  I am a bit surprised at the resposes to my question.  It looks like I have really found a good support system here that i never knew existed up untill a few weeks ago.  Thank you very much everyone for your answers.  They are a big help and have got me thinking alot on how to approach this problem.   Sorry about my introduction.  My name is Ian and I live in the east kootenays of BC.  Thanks again everyone.  All of your advice is welcome.  You may answer questions that i dont even know i have.

ian


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   03-11-2010, 12:34 PM
Joan Mattila is not online. Last active: 9/18/2009 1:47:23 PM Joan Mattila



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Re: Any Advice???
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My advice is be open and honest with everyone. Hopefully they will be understanding since it happens to anyone. I would try and find someone you feel that you can confide in and lean on to help you through the rough times. I know I have gone through some myself but thank the good lord, that I have a family that understands what I am going through and they are there for me to keep me upbeat on life in general.

Joan
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   03-09-2010, 4:48 PM
Doug_MacAulay is not online. Last active: 7/7/2010 7:54:24 PM Doug_MacAulay



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Hello Silverbullet305,

I've had all your symptoms and even in the same order (but I've had some recovery) and have dealt a lot with very intense depression in the past.  I sympathize with your having to adapt your lifestyle, I too know what that's like, but I would like you to consider that life is richer than we can even imagine and it's not over for you by a long shot. 

Adaptation is a long, bumpy road and our species finds it more difficult than any other on the planet - we constantly reshape our enviroment to fit us rather than fitting into the planet.  Even though your symptoms are uniqe to you, your situation is not.

This is the key point: you are not alone and don't have to do anything alone.  Ever. 

No one will think less of you.  No one will think you are weak.  No one will look down on you or treat you differently because you have MS.  Yet, finding the right time to tell friends and co-workers can be confusing and difficult and even a little scary.  And it is totally up to you when, if ever, and whom you tell.  I don't usually tell anyone myself unless it comes up (ie. in conversation or in life when I'm having issues with my symptoms.)  There are situations where I find people NEED to know as it effects the work I can do with those people and times when they don't need to know a thing about it, at all, period. 

I totally understand your hesitation to reach out to people.  It can be a total mind press to reach out when you are used to feeling independant and have never asked for help before in this way.  It took me 4 years to be able to ask for any help at all.  I finally am taking advantage of all the help that is offered if you know where to look and my quality of life continues to go up and up every day even if my symptoms are getting worse and worse. 

When I fall, hopefully the only thing I hurt is my pride and the only thing I bruse is my ego (my two biggest enemies in a life living with MS).  Both of which needed huge adjustment after my diagnosis.  As I said earlier - adaptation.  That's what it's all about. 

Depression creeps in when I am constantly looking at yesterday and tomorrow.  For me, it's no longer about what I could do yesterday and what I can hopefully do tomorrow but WHAT I CAN DO TODAY.  No more or no less.  It's finding a balance for your life so you can be productive and happy/healthy - which is difficult even for  people without MS. 

Here's the best news ever:

YOU are the expert on YOU.  And only YOU can live for right now.  Only you know when you need to rest, to work, to play, to love, to chill.  You might need to learn to listen to what you are not letting yourself tell yourself.  Your body will give you clues as to what is possible and the potential falls on you...

...but you are not alone.  We are here for you.  Family is there for you.  Anyone you choose to let help you is there for you.  The fear of the unknown is the last refuge of our own ignorance.  You might tell people you have MS and discover some amazing things about them and yourself.  Maybe some of them have things they didn't tell anyone either.  Maybe MS.  You never know. 

I wouldn't want you to do something you are not ready for.  However, I would encourage you to explore but not dwell on your new life.  Keep asking questions with wonder and not fear

We all have to face it: our lives are constantly changing over time.  But with us MS patients it happens a bit suddenly and seemingly all at once.  Don't worry if you need to reboot your system a few times to figure this all out.  MS can be quite overwhelming.  You are doing a great job.  You are already reaching out to people beyond your inner circle and we are responding to you.  That's a big step and good on you!  You might even find that wild side you think is gone is still there in many ways and things can be fun again. 

As for societies, unless you are living in a big city centre you might not find many people your age there and encounter many people with advanced conditions that might not help you mentally until you are ready for it.  But yes, always use your own judgment.

I'd love to chat more with you in the future if you are up to it.  Feel free to e-mail me anytime and ask as many questions as you like.  I hope your day has gone well and the night follows close behind.  All the best,

-Doug M

astoneintime@hotmail.com


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   03-07-2010, 10:11 AM
mlecompte is not online. Last active: 8/31/2009 1:52:19 PM mlecompte



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Hi, sorry don't know your first name, mine is Monique I live in Gatineau QC and had a stroke in 2001 and I've been DX MS since 2005. I've been on Copaxone for 1 1/2 years and it's going good. I and everyone on this website understand your feelings and frustrations. You took the first step and that is talking to us. We are a BIG family and we are here to help each other. So sit back and read on. It started for me with an Opticneurytis, like u, in my right eye then the weakness difficutly walking etc... but I recovered and I my right eye has 95% strenght. My latest MIR showed no new lesions on my brain and I can tell u this is good new. I also develop polymyalgia for which i'm taking Prednezone and Chemo. I only have my mother and sister for support, my husband and his family don't help me at all. I still work and very hard. My stepdaughter had [***] cancer last year and i was there for her, she recovered well. My father has Alzheimer my husband no longer works and it has been very difficult for me. Because of the medication i've gained weight but trying to keep it under control. Doug has good advise on that one and many other things (he is very nice ). All of this to say it has been almost 10 years for me and I will start going to support group starting at the end of march. It has taken this long to be comfortable in talking about it. I've learn to rely on the one thing that can teach me what to do and that is my body. The mood swings are very common and u have to learn to get through them. The only way is to talk about it. If you don't want to discuss it with family talk to us. We will help u deal with it. But it takes time, energy and trust to learn. Everything u r going through we have and are still going through. So take the time, read what u can but don't over read, don't get crazy on the info, there is alot out there, and the one thing that has truly help me is BREATHING. It sound crazy but it really helps. Take the time to feel your emotions if u want to cry then do so, if you are angry let it out. I have a friend (male)that has always said: "women overthink there problems and life, STOP IT, don't over think just live your life day to day" and u know what it does make sence. Well i've said alot and let me know what u r feeling and lets talk. Take care and remember SMILE, it's cheap
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   03-05-2010, 10:50 AM
silverbullet305 is not online. Last active: 3/5/2010 10:07:55 AM silverbullet305



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Hello everyone.

I am 28 year old man who was diagnosed officially about 6 months ago with r/r MS.  In the last year i have had 3 relapses with out 100% recovery.  Optical Nuritis was my first symptom which has left me with a useless right eye even a year after.  Second was the loss of feeling in the left side of my entire body which has left me with numbness in the leg and foot for  about 6 months now,  and third was the loss of feeling on the right side of my face and mouth which has been there for about a month and a half now.  Also day to day problems with walking, energy, mood ect.  I have tons of questions that I have unanswered but  im gonna start one at a time.  This is my first step in talk to anyone outside of my doctors.  I have tried so far to keep this strictly between my family and myself (and the docs).  But i dont even like dicussing it with my folks. I didnt want people to look at me different or treat me different in anyway.  But this is something that is not easily hidden.  I used to live quite a wild lifestyle, that has stopped,  Missing work during my relaspses also raises questions.  People are noticing the changes in my life and I am still reluctant to tell them.  My last relaspe was really hard on me.  I was very depressed and I was feeling very lonely but at the same time didnt want to be around anyone.  Has anyone else faced this problem?  I know there are groups and societies out there but I dont know if im ready to talk to them either.  Im finding my depression getting worse and my drive weakening by the day.  I dont know what to do.  Any advice???  Thanks,


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