two worlds

[uk2]

This is what i really want to say to all the people that are not ill but i know they would not understand.

Sometimes i feel i live in two worlds, sometimes i get to stay in your world and join in with some of the things you do, i might feel tired or have mild pain but im there for my friends , i make it to church, im there for my kids. Then sometimes i live in my world trapped in pain and frustration trying to just get by hour by hour, everybody else doing my job for me.

more and more i feel trapped in my world how do you bring the two worlds together so people understand what is happening how we are feeling!!

No iv not lost my mind or been smocking some funny stuff, iv just come back from the school run and have not been up there in a while and nobody could understand why i was on crutches again and i was trying to explain and one person said "well we all have our down days"  if she really knew the effort and pain it had taken me to get up there. But i guess this is a ivisable illness we look well in a sence but you cant see whats inside i guess thats why it can be very lonely and if it were not for sites like this it would be even more lonely.

God bless this site

Samantha

[uk2]

Maybe there is a space out there with all our lost things, we could all build a rocket to go find them!!

ok iv lost the plot up till 3 am this morn had a reaction to my sleeping tablets which im going to post about in a separate post!!

Take care

[T-lynn]

Your humor is probably with my memory and my glasses.Dang I lost both in the same week,I had to replace the glasses and the memory is probably floating around space somewhere.

You'll get it,it takes time and for the burning pain it does migrate and that honks me off!!!

T

[uk2]

Your so funny!!!  and it really picked me up reading that i think ill have to look for my humour somewhere i think iv missed placed it cause i need to fire it at these people if you see it let me know lol

My rib nerve pain started back in jan on and off they thought it was shingles but it stills comes and goes but now it is in other places in my body in flares its the most awfull pain and even my lyrica does not help i feel for you hun.

I pray you get some relief soon. x

[T-lynn]

Your frustration is understandable,unless someone goes through what we are they are ignorant to others feelings.

I had a really hard time when I got the full length leg braces,people stare,idiots.A girl I went to school with ask me the other day after 6 months of wearing the braces what did I do to my legs,me being me I told her I was doing a study for the orthotics facility to see what peoples reactions to them were.She ask me if I got paid good money for doing it.I know that was bad,I told her I had MS,she didn't find the humor in it that I did.Some cranky old lady behind me scolded me for it and said theres no humor in having MS.

I told her oh yes there was,I can get drunk no one would know the difference,I can misplace things and blame it on the ms,I have a reason to forget things and blame the MS.I can pee my pants and blame it on the ms.That old lady was mad.Oh well I got a good chuckle any ways.

If I really want to be rotten ,when I take my mom shopping sometimes the joints in the leg braces squeak when they need oiled and people will stare,I just tell them my ma is just old and rusty.

I don't even need a halloween costume,just be the tin man ---squeak-squeak.

I get alot of questions,I just politely answer them and be done.

As far as the nerve pain, no its still here.I think it wants to take up residency for a while.Oh well just one more lingering symptom.

Keep hanging on to your spirit and spunk,your two worlds will unite and the ones that care will be there.

T

[uk2]

Fran

got to my woman group today and had a really good pray and cry and let it all out!! Iv not been for a while and there were the usual questions "have they not found answers yet" but it was ok today i felt they were really with me and just wanted to help me get through it, one woman who three years ago had had a heart virus and now has CFS said she would never go in a wheel chair when she was ill and even now that she cant walk far wont go in one because of pride but she said that had left her a prisoner in her own home and said well done to me to breaking that pride and using the wheel chair!!
Which i was pleased about and i hope god breaks down her pride too. I dropped again in my diazapam and am certain this is the reason again for the low mood onto my sleeping tablets tonight so im hoping my mood will lift, iv prayed for it to lift and i know he is faithfull.

T-LYNN

I didnt really right the post in a sad mood more frustration, i guess this is a new walk for me and a new discovery of peoples reactions to my illness iv been shocked and probley carry on being shocked at that. I worked with since i was 17 in the care industry so im used to wheel chairs crutches etc but i guess for people working in other profession its not!! Even my best friend was puzzled and asked lots of questions like "did people talk to you in a different way" and" what is your pain like" but a deep breath and simple explanation was given i said she can take me out next time and she joked it would ruin her street cred!!  i hated to tell her that that had already with the clothes she wore but i didnt!! (meow!!)  Ill adjust and i think humour will be my route i seem to of lost myself along the way but i will embrace my new life and find my fighting spirit again. P.S how is that awfull nerve pain did it go?

grannyhotwheels

Been to lady meeting today and had a good prayer session, i can normanly lift myself out of this low so im thinking it medication based which im off as from tonight but god is so much bigger then this and he will walk me through this.Im ok it was just a frustration post rather then a sad one. x

mokibear

yes thats just what i was thinking and i wanted to share it with others as i know people on here would understand, since then i have shared it with a few of my close friends but i dont think they got it.Its something that i find the hardest to deal with at the moment the ups when i can join in and the downs when im trapped at home in pain. But i always have my friends on here and my faith. xx

crystaly

LOL have thought of that!!  xxx

doni

Your right hun, and im sorry about your daughter getting comments at work there just jealous and iv lived with that some of my life (not that you could tell that now iv put on too much weight and dont feel pretty)

As i said to T-LYNN  this is a new walk for me and iv always been in the caring industry since i was 17 and caring and being sensitive is what it was all about im used to wheelchairs, crutches and all sorts, so im amazed at peoples insensitivity and there lack of understanding or wanting to understand but i guess we are all different!! and untill you have lived that life they will never understand and i would never want them to live that life anyway.

your right if the world was more like the people on here it would be a nicer world, i have a good friend claire and my best mate helps out all the time with the kids when im ill with transport and trys to understand, and i have a network of people who will help with the kids when im going for my test so i am very blessed and i should start to realise that i cant change how they see me i can pray for a change in there heart but its me also who needs to harden up and except that this will happen.

I love your rambling your a girl after my own heart!!   love you too girl!!  

your last comment made me laugh so much!!!

SAM xxx

[doni54]

I understand what you mean, Sam.  One thing about people though, it doesn't matter what the subject there will be a smart *** with something to say.  It's just what our world has come to I guess.

My daughter, Beth, just started a new job and not to be bragging or anything, but she is a beautiful girl.  She has had all kinds of problems with the other women and girls she works with always having smart comments to her or about her.  It really bothers her, but I just told her that when the people making the comments were living her life and walking in her shoes, then they might have the right to their insensitive remarks.

If everyone out in the world was as loving, compassionate, and supportive as all of the people on this board it would be a grand place to live.  Since this is not the case, you just have to hold your head up high and just laugh in their face when they make uncalled for comments.  

Any health crisis especially one that doesn't show on the outside is an everyday struggle.  I have decided to enjoy my friends on this board and quit worrying about whether or not anyone else understands what I am going thru.  It is just too hard to keep trying to get people to understand how I am feeling, I need to conserve my energy and just concentrate on feeling the best I can from day to day.

I love my family, but I have come to the conclusion that they just don't want to understand. My best friend just changes the subject if I mention anything about my symtoms or anything pertaining to them.  I truly have gotten to the point that it really doesn't matter whether they understand or not.  I am the only person who knows how I feel and I will do whatever I am able to do and not worry about the rest.  

Everything will work out, Sam.  Just be tough and don't let other people's opinions or comments effect your state of mind.  You have enough to deal with without worrying about snipey people.

Well, sorry about rambling on.  I love ya, girlfriend!  Be tough and just tell those smart mouths to kiss your pretty little fanny!!!!!

Love & ((((hugs))))
doni

[crystaly]

Totally agree with everything said ! T lynn good on you !  shows you how insensative people are sometimes . Use your wheelchair when you need it sam and make abeeline for their heels lol !! then say oh so sorry works for me !!!! Oops not nice that is it !

[mokibear]

I think you said what a lot of us feel and you said it well. T-lynn is right when she said humour gets us through. I too get comments about how good I look and it must have been nice being home from work for the summer. What they don't know is most days I was inside because I can't handle the heat and suffer from it. I would go out early morning or in the evening when it cooled down. When the house would get warm I had cold cloths around my neck but ya I look good. haha

People who are well for the most part tend not too look past the nose on their face. They don't understand what they don't see and don't really want to even if you try to tell them. I say they aren't worth the breath it would take to tell them.

Hang in there. Always know that there are people here who understand and that is all that matters. As to the rest of the no-brainers (sorry lol) to heck with them.

My thoughts are with you
Moki

[grannyhotwheels]

Hang in there I know what your talking about.  It is so hard to live with this disease and others like it.  Just try to keep your faith in God and let him carry these burdens for you.  When I get tired of walking I just say here ya go Lord your turn.

I'll be praying,
Carol

[LLWB]

Invisable illness suck. My EX-husband couldn't see it either (fibro, degenerative arthritis, etc.) Couldn't see it, not there.....yeah, right!  T-Lynn.she deserved it! It's all I can do to work, and almost never leave my house unless it is to work. If I didn't have a job driving where I can sit, which makes the pain greater, I probably wouldn't be able to work at all. I'm surprised you didn't smack her in the mouth with the brace! No jury would convit (a jury of your peers is filled with MS'rs, right? ((((hugs))))) and prayers.

[T-lynn]

Humor gets us through this,its hard trying to combine both worlds but eventually they do.

Keep in mind with this invisable disease unless its stamped on our foreheads,people don't see deeper than our skin.

The lady with the opinion needed slapped with the crutch,she'd definately got some down time.Of coarse all people healthy or sick have down time,but with MS we seem to have a little more,we are a little slower when it comes to normal activities and so forth,the most important thing was you made it there.Thats all that counts.

I get rude and lude comments from a few idiots about my leg braces,I gotta have them,one lady had made the comment that if she had to wear them,she wouldn't leave her house,me and my smart mouth chirps up and says borrow mine do us all a favor stay home.

Samantha I have a disease it don't have me,I don't let people get to me anymore,you will find the balance between the two worlds and we are all going to encounter the idiots in our societies.

People are not going to understand a disease  they are not imformed about.

Cheer up

T

[frann]

God bless you too, Samantha

We know this has been an uphill battle and sometimes it may feel very lonely... you are right this site and all these wonderful friends who really do understand are pulling for you.... you just had a super day out shopping... right?? you sounded so happy... try to reflect on those happy moments.

I know you are a spiritual person and that you rely on the Lord for your strength too..so hang on...
besides the Lord, we are here for you too... remember that.

With love and prayers,
Frann