My Old Life

[uk2]

Hi All,

I know i am not dx yet and have been cleared of neuro disorders and that they think i have a pain condition but i have friends here from a time i spent looking for answers.

I have been really down this week and wanted to ask other people do they feel like this.

I feel i have lost my old life, my dreams, my plans, i am starting to lose friends as i can't go out with them anymore not even to a park sometimes with the children and they have stopped coming to visit me, i feel my children and my family have suffered because of my illness as i cant take them out in half term ( which it is now) and after school clubs as my husband works very long hours and cant pick them up and i cant take or collect them.

I have no family to support me and relay on my christian friends from the church to help who are wonderfull. I feel my friends don't have anything in commen with me anymore and don't understand what i can and can't do or my illness at all.

I feel i am fighting a losing battle with my local authroties to get benefits and help with school transport. Its hard enough being ill without having to fight for everything as well.

I know this is pure selfpitty and i am luckey to have what i have and that God has a plan in all this and i can cope with me but it does hurt when it effects others around me.

I know i can say these things here and not be judge, i know i am amoung friends, i also know tomorrow will be a better day but i just wanted to let it out!!

Sam

[Rena705]

Dear Samantha...I can feel your pain like you were standing next to me and I am here to try and help you out of this chapter of what seems to be a book that all of us are living through, one chapter at a time.  I wish that someone would be kind enough to remove a few of the more painful chapters like this one but it seems that we have to deal with our issues regardless of how crappy we feel and how little energy we have!

I don't know if you read about the "incident" I went through with my friends a few weeks back but I have to say that it was one of the most painful nights of my life.  I had gone to a friends by her invitation for an evening of what I thought was a game of cards and friendly banter like it had been for years previously.  I hadn't seen her for quite a while and I had a feeling that it had to do with my illness and her inability to understand what was going on.  It turned out that I was correct and I was treated very poorly that evening.  You have not mentioned that you have had to go through something like this but the ignorance or should I say lack of knowledge is evident in the fact that you feel as though you have lost your friends and you are basically miserable.  I am not going to tell the whole story of what happened that night...you will get the gist of if from my meeting with them as follows....

I asked my friends to meet me for coffee because I wanted to talk to them about something and it is very important that they come...
I started out by telling them that I understand if they are not sure how to deal with my illness because there are a lot of times I don't know either.  I asked them if that is how they felt?  I got a few shrugged shoulders and a few nods in response.

I asked them, why after all we have been through together, did they not feel comfortable enough to ask questions about it?  They didn't have an answer...just shrugged shoulders.  I told them that if they have questions about what is going on with me, I wouldn't make them feel uncomfortable if they asked questions!

I asked if they would mind if we did a little experiment...they agreed.  I asked the hostess who is the woman that had the liver transplant with her granddaughter to please sit at the table next to us.  I then asked secretly for everyone else to cut her off if she tried to talk, ignore her if she tried to start a conversation, plan a future trip to the movies while not including her.  They all agreed and it went on for a good 45 minutes!  SHE CERTAINLY GOT THE MESSAGE!

I then asked them to think back to last Saturday and look at the room as though from above...the seating plan, the conversation and when did the seating plan change by someone disappearing.  They knew exactly what I was talking about...me leaving!

I point blank asked them how the he** do they think I did my Christmas shopping last year?  Did they forget that I can't drive?  More shrugging shoulders.  Did they just have a hearing problem only when I called to ask for a ride to the mall and an hour of their time?  I told them, I am not trying to lay a guilt trip on anyone!  One person responded quite viciously that it sure sounded like it!  I responded that I didn't think any of you would be that passionate about it...unless of course you felt guilty!

I did not bring up anything from the past about the transplant or anything else that I have done for them...if they wanted to do anything to help me I figured that they would do it cause they want to not out of a guilty consciousness. (sp)

My husband then piped up (finally!) and asked the male members of this group, some of whom he grew up with and works with now, how the he** they thought he managed to work 12 hours shifts with overtime that he had to work and on everyday off he either had to go to the grocery store, the g.p's office, the neurologists office, and run every other errand that was required because Rena can't do it!  He asked them if they knew what was going on in the house or are they really that stupid? (guys can get away with talk like that I guess)  WELL, two of them admitted to being that stupid and said that they will make more of an effort to help.  My husband said that was only a small part of it though...why didn't they back Rena up when they are supposed to be her friend as well...why were they part of this **** that was pulled on the weekend...(by this time I am in tears of course, which I didn't want because I don't want any guilt trips!)

One of the fellas speaks up and says that he doesn't know how to talk to me because I talk weird.  FINE...WE ARE GETTING SOMEWHERE!  YEE HAW!!!  I explained to him (and all the rest) that yes I do have trouble with my speech sometimes but I am still Rena and I still have all the same thoughts and ideas in my head...just be a little more patient...it will come out, just a little slower and it's not like that all the time!  

Well that started the flow of questions and answers (or the best ones I could give) and I am SO HAPPY THAT I DID THIS!!!  We sat there and talked for about 2 hours about MS, not MS, Drug Overdose, my disabilities, other's disabilities (one of the fellas can not play darts for the life of him...can't even hit the board so we have decided that he has a dart disability but we won't hold it against him)!  We talked about how other people with disabilities are treated and why and what can be done by our little group to spread the word and ensure that people with disabilities are treated with respect.  

I explained that I really have no other life right now other than my lack of good health and I don't want to speak about my health all the time...BUT does that mean I want to listen to all the **** about all of your jobs and how much trouble your kids are in THIS time...NOOOOO!!!!  What difference does the topic make if it is overdone...NONE!!

I feel pretty good about what went on last night and two of these people called this morning to both say that they forgot to apologize for last Saturday...I told them that I accept their apology but only because I AM THEIR TRUE FRIEND and I want them to be mine as well!

Thanks for all of your support people and while I don't recommend confronting everyone with an attitude or lack of knowledge the way I have, I think its worth it to give it a try.

Sam...I will have these friends for life and while they are not on my doorstep 24/7 I don't mind that either...I wouldn't feel up to the company anyway BUT when I need some help they are there and we all got together last weekend and played cards on Sunday night and we had a great time....just give your friends the opportunity to know what is going on honey...they don't know unless you tell them.

It doesn't have to be as extreme as what I did but you are a smart girl...give it some thought...and it will take your mind off your aches and pains to boot!!!

I don't think your real friends will judge you either just like we wouldn't but you have to give them the opportunity to gain the knowledge about your needs as a friend...

Good Luck Honey

Rena

[Momzilla]

Sam~

Housebound is fine.  If that's the best you can do for now, that's the most you should ask of yourself.

As for me--I am working because I can right now.  I am physically able to.  If I couldn't, I wouldn't.  It's not easy, only because my boss is horrid.  She makes it tough.  Her mother was and is a hypochondriac in the purest sense of the word.  Truly.  

Beth is my boss, and Dan is her husband, a surgeon.  The two of them and my husband and I were great friends.  We used to go out to dinner each Friday night.  I started working for them when our family needed insurance.  It worked beautifully for years.  We still met each week for dinner.  Until I got sick.  Beth couldn't deal with it.  My absences.  She made fun of my migraines, belittling me.  When I got hearing aids, she called me Helen Keller.  When my doctor agreed it was a good idea for me to go on half days, she called in a lawyer.  Dan, as a doctor, knew I was sick from what I told him.  Beth couldn't deal with it.

She projected her feelings about her mother onto me with my real illness.  They forced me back to work.  This is a woman who even makes her children go to school when they have the stomach flu.  They have to go to the bathroom to vomit, and make all their friends sick, I'm sure.  She's quite insane.

But now, I'm feeling pretty good.  A little fatigue, but I'm doing all right.  And because she hates me so, she NEVER comes back to my office.  I do my work on my own and get it done quite efficiently.  No one bothers me.  It is lonely, as the other girls know not to socialize with me because they know it will not go over well.  So, I go to work, do my work and go home.

My husband is there to complain to. Now this has become about me.  Sorry.

The point was going to be that I am no hero for working right now.  I am physically able to.  You do what you can.

Your job right now is to get to the bottom of what is ailing you, and to get better.  Consider that your job.  And to rest your weary body.  If you can do that, your earning your keep, so to speak.  Don't worry about what your life was, or what it should or could be.  Think about what you need to do to take care of yourself.  If you're not well, your family will not be, either.

If Mama ain't happy, ain't nobody happy.  Make Sam well and happy.

Love,

Zilla*

[mokibear]

I feel for you so much right now. I too have been having a rough go trying to deal with all that is happening. Having no diagnosis is difficult and makes it harder to try to explain to others what is wrong with oneself. I just got passed over for a promotion (it is justified) because I am not capable anymore of doing the hours that are needed. I am no longer reliable enough.

The reality that our life is never going to be the same, is a hard pill to swallow. Zilla is right though in trying to reinvent ourselves. All we can do is take one day at a time and get through it the best that we can. It seems that these lows are all part of what happens in this process and at least here you know that others do understand how you are feeling.

It is true friends will come and go. It is sad though when an illness is the cause of the going but not everyone can deal well with that. I have been fortunate that most of my friends remain, although I did lose a few in the process. I have gained new ones being here on this forum though so in fact I have not lost anything.

I hope you get to feeling better soon and that you get a diagnosis soon. My thoughts and prayers are with you.
Moki

[tmjfibro]

HELLO SAM I AM SORRY YOU ARE HAVING A ROUGH TIME OF IT .I TOTALLY
UNDERSTAND HOW YOU FEEL .I WAS DX WITH FM 12 YRS AGO .WHEN MY RHUMMY DX ME HE SAID NO PAIN NO GAIN .TRUE FREINDS STAY THOUGH
ANY THING .I LOST LOTS OF FREINDS THOUGH MY ILLNES ,BUT THEY WERE
NEVER TRUE FREINDS .I NOW HAVE SOME AMAZING FREINDS WHO UNDERSTAND WHEN I CANT DO THINGS.I UNDERSTAND HOW LONELY IT CAN BE WHEN YOU CANT JUST GO OUT AND DO THINGS .I TO AM IN THE UK AND KNOW HOW HARD IT IS TO GET DISABILTY AND THE BLUE BADGE .I JUST KEPT APPEALING AND I THINK THEY FINALLY HAD ENOUGHT AND GRANTED IT TO ME .THE HARDEST PART FOR ME WAS ACCEPTING WHAT I COULD NOT DO ANY MORE WITH MY GRANDKIDS
MY HUBBY BROUGHT ME A MOBILTY SCOOTER THE BEST PRESENT EVER IT GAVE ME INDEPENCE .SAM IT IS GOOD THAT YOU HAVE YOUR FREINDS FROM CHURCH AND YOUR FAMILY WHICH ARE THE MOST IMPORTANT PEOPLE IN YOUR LIFE

TO ZILLA
SORRY YOU ARE HAVING A ROUGH TIME AT WORK
HAVING A BOSS WHO HATES YOU MUST BE VERY TOUGH
BIG SOFT HUGS SAM AND ZILLA

[uk2]

Heather

It is true that people come and people go in your life and sometimes God puts people in your life for a reason and then they are gone again.

I have made many special friends from here and another chronic pain forum and email them nearly everyday and without them and you all on here i would of struggled so much more.

God has taught me alot in my illness and i have found out things about family and friends which are hurtfull as i had always thought there support would be there and it is not but i have also learnt to ask for help from my christians friends and my best friend who have surprised me with there compassion. I have learnt to be still and listen to God and read more scriptures too.

I thank-you all for your contiued support.

Princess

I loved my job and all my friends and miss it alot all my friends said they would pop in and see me and keep in touch and that was last May and i have not heard from any of them!! but they all work hard and once your not working any more it's hard to keep up with everybody and what they are doing. I was a support carer in the community and had a varied range of age groups i used to look after and you build such relationships up i still see two of my old clients when i can and my husband still pops in every saturday and gets his shopping and makes sure he is fine. I'm also lucky to have my husband and it would be harder on my own. I feel like i ma going out of my mind somedays as i get so bored as i can only do so much physically and can only read so much plus my mind wonders so much LOL

I will pray for you too princess.

Hugs to you both xx

[princess73]

I can empathize. I am starting a new chapter in my life. After working full-time for 12 yrs, now I am on disability. I feel like I have lost something that was very important in my life.  My job was a major part of my identity.  As far as benefits go, I explained to my rheumy and my pcp that I had to have the fibro dx until something else shows up. If you can get your rheumy to state a dx, that will help with benefits. Remember that your  kids have unconditional love for you and so do all of your friends on this forum. If your Christian friends are true Christians, they will find a commonality with you to maintain your friendship. I have always been very independent, but am now learning that my family and friends like to help and need me to ask for it. They don't like to see me hurting. Let us know how things go. You are in my thoughts and prayers.

[Heather3418]

Wow this is really a tough time in your life.  No matter whether you suffer from type of disability or what...life is full of uncertain paths.  Nothing in life is guarantee.  We seem to lose friends along the way, whether we suffer from any illness or not.  Life is like that.

One thing you can be sure of, is that you have many friends here.  I know it's not the same as if you had someone right there in your living room that you can talk face to face with.  But it's better than going through this life, without ANYONE to understand.  We are here to listen and offer what support and prayers we can.

Our lives change everyday.  It's a fact of life.  We can never recapture our old life.  If we lose friends when we are ill, than Samantha, they were never true friends to begin with.  It's hurtful.  I have lost so many "friends" throughout my life, but somehow, someway, new friends come into my life.  It's the true friends that stick around even despite an illness that are the special ones.  With patience, they will come Sam.  I have faith and hopefully you do too.

Don't forget about all of your friends here.  You have to know that we are TRUE friends, that have never left your side...

Big Hugs,
Heather

[uk2]

Quix

Hi i've had so many dx throw around but none have settled on me if you get what i mean one will say it could be this?? or maybe this???

My neuro says i have some pain condition like ? fibromyalgia or MPS plus i have problems with disks in my back (my back has gone again this week!!)

I'm seeing a rheumy on the 29th of Feb so hopefully i will get a dx and then get some help with benefits and a disabled badge so i can get out more.

I need to bloke these negetive thoughts and replace them positive thoughts and i think i'll cope better when i get a dx as i can say this is what i have and try and move on.

Zilla

I'm sorry your feeling this way too, and having a boss that hates you is awfull. It's great that your still working though and should be proud of yourself for that. We do need to reinvent our selfs and i must work on that, it's hard when you are mainly house bound i look around and think i want to do this and this but i cant cause of the pain and then i get depressed!!

LLWB

I know that feeling of just lying down and not waking up as the pain is so bad.

I wish i could help you, but i'm not much use over here and even if i was over there i'd be useless except to give you a big cuddle!!

It's awfull you have to keep working when you are in such pain, and i guess i am luckey that my husband does work hard to keep a roof over our heads.

MCBCON

Thanks for your words, i do thank God everyday for the things i have around me and i should stop comparing my old life to my new as it does no good, but sometimes i just can't help the thoughts in my head.

[MCBCON]

Sam,

Throughout our journey we find that we have each other.  Your children  are okay, your spouse is okay.  Just love and all else is not important.  Yes, it is troubling, difficult, and stressful.  But, neve loose sight of the simple things all around you.

Whqt I typed above seems too easy to be of benefit.  But, that is the only thing I have myself to hold on to.  Do not let yourself let go of them.

Michael

"In the end only kindness matters"  -- Jewel

[Quixotic1]

I feelso bad for the situation you are in.  I can't believe they denied you disability.  Didn't someone diagnose a central pain syndrome?  Surely with the meds your are on, they could see that you cannot work.

As for seeing what you have lost, that put me in a funk for years.  The love annd help of my family carried me though.  I did sleep through a lot of it which you cannot do with children.

Maybe there is a friend you could try to explain in detail what is happening and ask for help and reassurance that the friendship still is okay.  Rena taught us that sometimes we have to "spell it out" to those friends who hold back.  If they hold back in ignorance or a feeling of helplessness, then we can teach them.  If they don't want to see the ugly side of life, then they were not friends.

We are all here for you, but that doesn't help with the kids.  Could you ask the parents of some of the kids friends if they would help your children have some fun during break.

I'll be sending good thoughts and good ripples your way.

Quix

[LLWB]

I think the feelings of isolation are probably the worst that there is.  As you both know, my 17 yr old lives with his Dad, and gets to visit me at his Dad's convenience. My 41yr old daughter lives clear across the country in Florida. I am a widow, who had to give up my ranch, horses, cows etc. because I couldn't work full time and take care of 60 acres.  I maybe have 3 close friends, and my best friend lives in Wyoming. I'm talking really isolated. I worry about not being able eto take care of myself in later years. Even if I don't ever get a dx of MS, I already have degenerative osteo-arthritis, fibromyalgia, type 2 diabetes, to mention just a few things. Sometimes I don't think it's worth trying to even get a dx. I have to work, can't afford not to, but it takes all I can do to get thru the work week. I would like to be able to plan something for the weekends, but when they get here, I'm so exhausted I don't do anything. It's a major effort to plan an event, and if I do, but the time it comes up, I usually don't want to do anything but sleep. Some nights it just feels like it would be easier to just go to sleep..........forever, and not hurt any more. But that isn't what the Lord has in mind, I'm sure. And I'm stubborn enough to stick around and see how it turns out. When we have times like this, we just need to remember..."I am with you Always"........................ I would love to be screaming about now, but my Condo neighbors would wonder what the crazy lady is up to! LOL.....Maggie

[Momzilla]

I had a similar melt down yesterday and don't feel much better today.

I'm sorry you feel that way.  I can totally relate.  I sit at work here, too exhausted to keep my mind on my job, just trying to stay awake until it's time to go home.  I fell asleep at my computer a few days ago, and I hope no one saw.  My office is in the back, and my boss hates me, so hopefully she didn't come back while I was sleeping!

We have to find a way to reinvent ourselves, to move forward in our new incarnations, somehow.  We have to find value in who we are and learn to enjoy ourselves again.  Maybe make new friends.  Find old friends and make the effort to connect in a new way...  It's so hard, but we just have to do it.  If not for ourselves, for our children.

I will try if you will.

Hang in there.

Zilla*

[dowma]

I'm so sorry your having such a difficult time, I wish I had the right words to say and cheer you up.  I too can relate to loosing a life I once had.  Being very active with work, family and socially to not being able to do much at all is very depressing.  
I think it is wonderful that you have support from your church family and friends and sounds like you have a wonderful husband.  Keep your chin up and keep in touch with all your friends here on the forum.  Wishing you all the best.  
Mary Beth