Family Problems
 

Its been since Feb since all of this went downhill to where I'm unable to work or drive. A lot of pain, and doctor visits since that time. What my life consists of is just staying in my room, fan blowing, sometimes the window unit AC to keep me cool, and also constantly on my computer. When I do get up, I always seem to stretch, especially my back because it feels like It needs popping (if you know what that means). I don't have a real social life, most of it is online.

My mother and grandmother complain about how much time I spend on the computer, but it gives me an outlet. I have friends, but not the kind you see or even talk to everyday. Only time I really see anyone is if I go to the grocery story or church.

Another thing is that I like to sleep. I just want to have relaxing sleep too. But my mother and grandmother just complain about this as well, telling me to get up and move around and get out of the house. I keep thinking that there isn't nothing for me to do outside of the house, I don't like to be outside at all. I only go to the grocery story is needed but I don't like going because I get dizzy almost every time.

How do I talk to my family about this stuff, and get them to understand where I'm coming from? It is not that I'm lazy, it is just I don't feel like doing anything.

Hi skywalker1988,

I am going to agree with your mother and grandmother.

You are way too young to just sit, sleep, play video games and spend time on the computer. There is so much more to life.

If you continue living your life the way you are someday you will wake up and wonder what happened to your life. I can guarantee you the regrets and what ifs will happen when you realize how much of your life you wasted.

Life is what you make of it --- even with a disease like MS.

Maybe it's time to talk to a mental health provider (Psychiatrist, Psychotherapist) who can help you become motivated to enjoy life.

All of us with this disease encounter difficulties and pain but we don't stop living because of it.

You can live your life INSPITE of MS.

I just wanted to second Snoopy's vote and wish you a better day.:hug:

Has a doctor told you why you get dizzy? I wouldn't enjoy going out much if that was happening to me so you ought to find a doctor to address that problem. :)

I started with this MS stuff in Feb, but before that my life was worse. It seems that now being alone most of the time I feel better. Yeah I have pains with MS, but I'm just a loner. I know what it's like to have a good large amount of money and just go places. I fulfilled that. I've had so much hurt from other people, that I want to be alone, and being alone satisfies me.

maybe you could find something you'd like to do, even if it's alone...
like a craft, or painting, just something to take up some time and fill your mind.

do you like to read, like space, like nature or animals? try something like that.

This is a disease that can isolate you big time - often because others can't see your disability, sometimes because they are frightened of it, but - you can't let that happen.

Loneliness and separation from society will not help you in the long run, and the longer you let this manifest, the harder it will be. We all need a sense of belonging to community - whether it be large or small. This might be a family, club, a support group or a group of friends - or lots of other things. This group is amazing, but it can't satisfy the physical need of someone to hug, someone to pat you on the back if you do something great or to give you a gentle smack if you are being a goose.

Please be careful - isolation is a fast track to depression. So, please live your life as best you can (no matter how bad things are for me, there always seems to be someone that I know who has it a hundred times worse), Try and look through your pain and fear and find a positive - they are there - however deeply buried.

Good luck, and try and have a good day.

skywalker i am like you, i can't get around, and deal with debilitating pain. i spend most everyday online playing a time killing game. i enjoy it, and socialize with people around the world. and my sister and oher more productive family dont understand it. get used to it bud :hug:

I can totally understand this.

But you're so young.....and MS doesn't have to be the thing that stops you from living. Have you thought about seeing a therapist? It may help.

What if being alone is how I want to live?

Luke, what the others say is true. You are too young to become a
hermit like me.:eek: Even I reach out to Family and Friends to come
visit or take me out(which is more difficult), once in awhile.:Wave-Hello: i
don't want to let peeps forget me or ignore me, just because I
can play well, anymore.:cool:

I do like being home alone with no more daily obligations, but I'm
70s yrs old and have lived the good life, while I could.:yahoo:.

Don't let this rotten disease take that opportunity away from you.:hug:

Luke, I know exactly where you are coming from, especially inn this day and age where there are so many ways to keep yourself busy and somewhat content from home - where you are most comfortable.

But there is a theory going around that it is best to stay connected with the outside world. I have tested this theory repeatedly, and the answer always comes out the same. There is something about being human that means you always have a need to expand your horizons.

You and I probably do a good job of that with the internet. But you've got to be more balanced than that to feel your best, even if the only reason you do it is to satisfy a "helpful" relative. I can't tell you how many times I've gone out for the day with my hubby mostly because he has encouraged me. I know it is good for me to get out, and it gives the poor guy (hubby) something to do. He can't stand having nothing to do, poor man. ;)

Sounds fine to me if that is truly what you want however...

if you are living in your family's home and they are helping support you financially they are going to have something to say about it.

Im the same way. I want to stay home. Can't stand going out. People irritate me anymore. Ive got about a good 20 plus yrs on you, but I hate all the snide remarks I get when I reach for that motor cart just so I can make it thru the store. I beg my dh to just let me stay home. Im hurting and really just don't feel like going out.

He MAKES me go out kicking and screaming, but once we get out there and I feel the breeze and we're driving and I see the surroundings, I suddenly become thankful for his persistence. By the time we get back, I am in more pain then before we started, Im tearing thru the house as much as a person with a walker can tear thru a house, but I am looking for my meds and hitting the bed like a bomb. But you know what, it was worth it.

He doesn't do it a lot, but just enough to let me know that, hey, Im not dead yet and I CAN still move around. Move around while you still can, because one day, you may loose it. That's my fear. Im not here to scare ya, but by now you know, MS is very unpredictable. Use it before you lose it.

Skywalker, this made me think of you and me and our "problem."
:

http://i101.photobucket.com/albums/m...5734058-14.jpg

Me too, Marion..LOL!!!

Hi,

I wanted to say I agree with the others that you DO need to get out and do things, even if it is just once in a while... although I know it is easier said than done.:rolleyes:

I'm 18 and have been ill since I was 12. I spent over a year in a wheelchair unable to walk, having to attend hospital at least twice a week for PT. Because of this I couldn't attend school (my teachers said it wasn't safe for me to attend - there was no lifts etc). My so called 'friends' didn't come by to see how I was or even email to ask if I wanted to do anything. It stressed me out because even though I wasn't well, I was still the same person and still wanted to do things people my age did (of what I was able to anyways).

I eventually learnt how to walk again but was in so much pain I couldn't attend full time school... plus my school said my attendance would be too bad to attend mainstream school.:rolleyes: My parents fought for me to go to a school centre that was for children with physical disabilities (not mental) or that simply couldn't go to school for one reason or another (bullying, being a carer to parents etc). At this centre I met many new people and made new friends and slowly started doing activities people my age do.

The year I spent isolated, unable to walk and on my own with only my parents for support really made me depressed. It is because of that reason I now try and go out when I can to see my friends and have as much of a 'normal' life as possible. Yes i'm still ill and yes I have to pay for having fun sometimes for several days afterwards but its worth it. Plus going out sometimes helps you 'forget' about some of the symptoms for a little while.

I KNOW its hard to force yourself into doing something when you really don't feel well or just like your own company but please listen to what your family are telling you. You only live once but if you do it right, once is enough (even with an illness). Do things that you are able to, don't feel forced into running a marathon or something but please don't look back on life when your older thinking to yourself 'I wish I did things when I was younger' because you will regret it... I know I regret not going out when I was unable to walk and keeping in contact with friends as I missed out on a lot of my childhood because of it. :rolleyes:

Take care
Alison

Hi Ali, love you!!:hug:

You too, Sal! Hope you're doing well. :) :hug:

Luke,

It is essential that you get out of the house, even if you enjoy being alone and staying home.

I very much enjoy living alone but getting out allows me to better enjoy my own space without becoming detached from reality, lonely or depressed when this disease forces me to remain home.

Engaging with people in my community, with friends, co-workers and family on a regular basis ensures that I have access to their support when I need it. We help each other out as we are able. When I am well, I help others who need assistance and that enriches my life, giving purpose and pleasure to it.

Doing that also takes my mind off of my own challenges for a while and that is so important for psychological and emotional well being. I really think that we are forced to spend time thinking about our own situations because of this disease, so thinking and doing things for the benefit of others provides relief.

It is a true blessing to assist others in any way that opportunities allow because it benefits others as well as those who engage in it. Without that, it is all too easy to lock one's self away in seclusion and descend into a state of self pity and hopeless despair.

You might think about joining a support group in your area that holds regular meetings, so that you can attend them. There you might meet others with similar interests, who also understand the challenges that you face, so that you can engage in them together.

This disease should not limit our abilities to expand our consciousness, nor will it if we continue to dream, set goals and pursue them as we are able.

I wish you opportunities in abundance and the will to do just that.:hug::hug:

With love, Erika

Ali is my hero. When she was 12, she always amazed me how strong and wise she was. She is my own kids' (boy/girl twins) ages so I keep tabs on her and them when possible (Ali rarely now, like only now). I used to be on Facebook (an account I deactivated long ago) but admit when I was a "Facebook Stalker", I looked at Ali's and my kids' FB to look at their lives. Friends, boy/girl friends, breakups.And I always told my students (emotionally Disturbed) I had an invisible sign up on the wall LIFE IS NOT FAIR. It isn't

Aw thanks Kicker, you've just fetched tears to my eyes. :hug:

You're right, life isn't fair but I figured without this illness, I wouldn't be the person I am today. It made me have to grow up far quicker than I wanted to but its also gave me so many valuable life experiences and made me appreciate small things much more than I probably would have if I wasn't ill. Its made life tough and relationships a lot harder (recently come out of a three and half year relationship), friends don't understand and even some family members walked out on me when I never thought they would and when I needed them the most but I guess its made me who I am today. :rolleyes:

I'm 18 now, soon to be 19. Seems a long time ago when I was that scared 12 year old who felt like life was going to end, I've definitely come a long way since then.

Thanks for your support. its you guys here that helped me accept life for how it is, good and bad. :hug:


Luke,

I know you probably think people are lecturing you to go out but it isn't the case. We all want what is best for you. I know first hand how lonely it can get being ill, especially at a young age (i'm guessing your young from your posts?). Please try and make the best of life while you can. I'm like you, I like my own company but too much of it and I become depressed. I spend half of my time in the house and half out, when i'm up to it. During the week I try and save myself for the weekend to go to cinema or shopping with friends. I sometimes go clubbing although this is more difficult due to standing issues. Its hard and I do have to pay the price for having fun but its definitely worth it. If you ever want someone to talk to, who understands how hard it can be to motivate yourself i'm here. :hug:

Ali,
So happy to hear from you!! You've taught all of us so much about how to deal with the hand we're dealt. It isn't always easy; some may leave us, and some of us who have very strong support feel guilty about how our illness is burdening them...
Luke, I've been hiding in my house a lot lately also...usually due to the fact that the unpredictability of my symptoms makes it easier to hide in the house.
But when I do get out, especially when i connect with friends or when I get involved in helping others out, I feel SO much better...
It's difficult to break out of the box we make of our lives...but break out we must. One of my favorite sayings is that life gives you lemons...so make lemonade.
Hope you can get some assistance with everything...and this is such a great place for advice and support...
Take care...:grouphug:

Well a little update on me. Started dieting and exercising this past Saturday. I haven't really ate any bad foods, and I've been either walking or raking the yard. I was sore this morning, but I feel better now. I was denied disability this past Saturday as well, which I'll be doing an appeal with my lawyer. I'm just not sure what to make of this because I think if I can lose some weight, and get stronger, I can just go find a job and make my own money. That's probably the best thing anyways. I want to try and lose a lot of weight by the end of the year. I weight 265 now, and need to get to 200 at least.

And Luke wants to thank everyone for their support..:D

Getting out.

I like how you are starting to become proactive in your life. I am glad you are open to hearing another's perspective.

I do have a suggestion. It may or may not be a good one for you.

Is there a local animal shelter? Perhaps you can volunteer there with the goal of becoming one of their dog walkers. Dogs give love unconditionally. They don't care how you look, what you say. They just love. I can imagine how truly happy any dog would be to get out of their cage and smell the great outdoors.

It could be the new you, walking then learning to run and giving dogs the chance to stretch.

You would realize how much you are needed. And it might take you outside your own head, even for just a moment. Even on the days when the pain is huge, it might be just what the dog needed, a pet and company.

It could be just what you need too. Rain or shine, you could be out there making their world better and in the process, enriching your own.

That is a great suggestion, Cyn. :)

Yeah I hate statements like that