Fed up of the forward and back!!!

Hi Everyone,

Just come on here to whine really, which is not good i know.

Had a really good week so i thought i would go and visit my church who are having a away weekend i could not go for the whole weekend as i could not of coped but i felt well enough to drive me and a friend and my kids down (it was an hour drive).
It was fantastic seeing everybody the kids just played all afternoon and i just sat and talked i could feel the nerve pain building but i ignored it, i started to get cold too but ignored that by the time i had driven home and dropped my friend off (she cant drive) i was in pain which has gone on all night and into today, i cant bare to be touched any pressure sets the nerve pain off again and my poor husband has to run the home again today it s so frustrating watching him do things i want to do.
My kids or friends cant understand how yesterday i sat and chatted with them but today i am in agnony neither can i.

Im fed up of moving forward then back ward everybody asking me whats wrong and i cant tell them anything as i dont know!!

Its been a year of my life by Nov this year since i have been having issues (and longer if you go back and piece it together)

All my friends our out having fun, i know i am blessed with so many things and i know i can get through this flare again!! but i just had to tell somebody how i was feeling to get it off my chest before i screamed!!

I will go and have a prayer time now relax and sink once again into my sofa as my husband is out for a couple of hours which he needs after caring for us all day!!

God Bless

Samantha

[grannyhotwheels]

The issues we face everyday are so hard.  The hardest part is knowing that those around us do not understand.  To me it seems that all we have is each other here.  I know everyone is probably asking themselves why you felt so good yesterday and can't get out of bed today.

I don't think they will ever understand unless they suffer chronic pain themselves.  Which we pray that wont happen.  You have to take care of yourself and if that means laying in bed all day today and tomorrow then that's what you'll have to do.  

After hearing what everyone had to say to me I think we all need to go to a MS meeting or pain meeting or something that would explain what we go through.  Sometimes hearing it from someone besides us is more believable.  I'm going to try and find something that my family can attend.  Not believing is the same as not understanding.  

Right now all you can do is take care of yourself and pray that God will take care of the rest.  My grace is sufficient in thee for by weakness we are made strong.  Reading that you think well I should be very strong by now, but when you really think about it you are.  Whining as you put it does not make you weak it makes you human.  We can't bare this trial alone so be thankful that your husband will run the house and do the things you want to do.  Also know that through it all you have God on you side.

I pray that your pain will ease for you.  Take care of yourself and never you mind what others think.  They haven't walked a mile in your shoes yet.

I'll be praying,
Carol

[floridamom2]

I feel for you and am in totally the same spot.  I have spent the weekend with my kids sports activities and cleaning my house and when I do this by Sunday afternoon I can barely walk and I know I will be paying for it tomorrow still even though I have to work and then homework & practice starts again. It is an endless cycle of  trying to pretend I can still do all those things and then feeling guilty when I cannot keep up the pace.  I have also stopped talking to my friends about it much, you can tell they do not understand and just want me to lie and say I feel good when I don't.  

I think Carol is right, God led us all here and we are eachothers support group to help us get through all this.  We are all in the same boat regardless of the cause and we are all so blessed to have someone to whine to when we need to get it out.

I for one am glad you got your feelings out, it helped me get mine out!  Take care of yourself and give your hubby an extra hug for all that he is doing to help too.
Kristin

  

[T.O.fire]

Hello, I feel for you, I can totaly understand what you're going through. As the sound of frustration in your words goes through my mind, I sit here on a Sunday night seeing how my anger over this affliction is driving my wife crazy. Yes i want to scream also, the lack of control the uncertenty of tomorrow can be overwhelming.

Some times the fear of speaking out to others is very frighting, what will they think, how will they see me. Have I lost my ability to be as productive as I can. Can I contonue beeing the father, husband that I want to be.

The only place that seems safe to talk about this "THING" in my head is here.

We all have to have faith, as hard as it seems, we must learn to control the disease not let the disease control us. learning this small thing will allow us to be us and be strong enough for long enough for the day the we can jump for joy in hearing the words " THET FOUND A WAY TO STOP IT"!

[Quixotic1]

AMEN!! to all that was just said.  The National MS Society site (US) has some good brochures on living with an invisible illness - written for the family and friends called, "But, You Look So Good!"  It is so hard on those that live in the house with us.  My sister has the patience of Job, but she get tired of me being tired.

Before this forum I had a period of about two years when I was productive of NOTHING.  I hated it and I hated my life.  You all have saved me.

But, when someone said that about try walking (or NOT) in our shoes, it reminded me of this.

"Before you criticize a person, walk a mile in his shoes.  That way, if you tick him off, you are a mile away and he is bare-footed."  (a little inappropriate humor - it's the disease!  not me!)

Love you all, Quix

[Momzilla]

It's so funny (NOT) to read everyone's posts.  My mom called this weekend a few times, and I missed her calls because I was napping.  Everyone else was out running errands or working around the house.  

I spoke with her this evening finally and she asked what I was doing, and I said, Oh, just watching (my husband) fold laundry.  He's making dinner right now, too.  He just came inside from playing soccer with the boys.  I just woke up from a nap.  And my husband turned around and gave me a big smile for acknowledging all he was doing, at least.

My mom was kind of surprised, and it sounded like she was a little annoyed.  But, David knew it was the best I could do today.  Sunday is my catch-up day.  Yesterday I was absolutely miserable.  He travels a lot, and he appreciates me taking up the slack when he's gone and I'm feeling rotten.  I wasn't explaining anything.  We had a nice talk and that was that.  If she'd have asked, I'd have said something, but David and I have it worked out.  That's all that matters sometimes.

Love you all, too,

Twinkle toes*

[uk2]

Thank God for you All

Reading your posts gave me an insight into your worlds and again made me realise i am not alone.

grannyhotwheels

Thank you for your words, iv been thinking of joining a pain support group as not dx yet its hard to know what to look for but ithink there are groups out there. I prayed after i whined and i then rang a friend to organise lifts for the kids as i knew i could not do it today and thank she will help her and another friend are so supportive they cant understand but they are willing to help with practical things. I praise God that i do have a husabnd that takes care of practical things when i need him too i pray that God will heal his heart for us as are relationship is more of a carer role then a husband and wife in there thirtys! I know i have to ride through these days and i know God carrys me and my family through i have been reading Joyce Meyers and looking at psalm 103;5 and isaiah 41;10 and that really helps me at times like this. x

floridamum2
Im sure of that, that God did lead us here to support one another and listen as we so understand what each other is feeling. Im glad you were able to express how you were feeling too. x

T.O.fire
Hi dont think we have talked before. It must be hard for a man to have to ask for help maybe harder then a woman as we sometimes (not all of us) but look for a man for strength. I feel for you and i pray your wife will support you in every way she can and that you will still be able to be the father God had planned for you, you can teach your children alot about being ill its about team work, everybody pulling together supporting one another sacrifice and love, which is something your family might not of learnt if you had not become ill, on my better ways i try and think of it that way. I also find except talking to God the only place i can release my true feelings.

Quix
I loved your quote it made me smile!!   I too feel this site has plucked me out of a place where i could not talk to nobody about my illness to somewhere i can freely express myself , not to be judge but to be understood and loved and advise given from people who have and our walking in my shoes!! x

Momzilla

It so nice you have that understanding between you and your husband that he just knows these things need to be done, my husband does the basic and he would do more but i cant seem to let go its something i need to pray about and let him do more, its funny how the outside world looking in judge and get annoyed so quickly!!

God Bles your twinkle toes!! x

[doni54]

Great thread!  Yesterday in my misery and feeling sorry for myself as I have done everyday for the past few months, I got mad.  I got mad at the pain, I got mad cause I can't do the things I used to, I got mad when I saw my beautiful flower beds all choked up with weeds, I got mad at my husband cause he was mad at me for not feeling good since I worked on the jobsite the other day, I got mad cause I don't feel I can talk to my family about what I am feeling cause they don't want to hear it because I am not suppose to be sick - I am suppose to always be the strong one.  I was just furious!!!!!

I have fought through all these symtoms (symptoms) for years, but I have to admit that this year it has been worse.  I haven't been dx yet, but am about 95% sure it is MS.  I just have too many of the symtoms (symptoms) the dx ed have talked about.  I think when I finally figured out what has been happening to me, I just gave in to it all.

Well, I prayed really long and hard yesterday for God to give me the strength to get my fight back. I had lost it somewhere along the way.  I think I truly had given up, between my eyes getting so bad at times, the pain unbearable most of the time, not having any energy at all......

Last night before going to sleep I made myself a promise...No more feeling sorry for myself!!!!  I will do what I want to do even though I will pay for it later. I am NOT going to let whatever is wrong with me win.  I am the winner and I intend to fight with everything I have.

When I woke up this morning I told myself I was going to have a good day.  As the symptoms start I am just trying to ignore them (I know this sounds stupid, but it is helping a little bit).  I keep telling myself to be strong and fight.

Thank you all for always being here to listen to me. I know this post is mostly a rant, but I have got to do something positive and get myself out of this awful pit I have been in for months.  I love you all and believe you and this site were sent to me by God.  I don't think I would have survived the past few months without all of you, you are all just the greatest!

I hope all of you have a good and pain free day

Love and (((((((((((hugs))))))))))))))

Doni

[Heather3418]

My Lord....each and every one of your posts of concern and caring to uk2, made me weep.  Each and every one of you, deserve the biggest of hugs...of course, without crushing those "hidden wings," which I am now SURE, each one of you REALLY DO have, underneath your earthly clothes.

Each of you have touched my life today, in something you have said here.  And I thank you.  God bless each and every one of you...and to you "uk2," God love you, sweet, dear lady...I hope you believe it when I say that each of us really do know exactly how you feel.  It is evident from each person's post today....

What a GREAT GROUP of selfless human beings.  I needed that cry...but it was a good cry.  God bless you...

Heather

[uk2]

Doni

Im glad my thread has helped us all in some way today! I have too today prayed for strength even though i feel a sleep praying (which often happens these days lol) Im sure the big man upstairs hears whats in my heart.!

I can never sink into my sofa or bed for long before my children arrive home, my friend brought them home bless her!! and to my surprise my eldest hovered my others sorting out there bags and lunch boxes (which they usualy dump in the middle of the floor!!) and are now upstairs playing oh thank you Lord!!

I pray for you doni that you will put this illness in its place i pray you will get answers soon and i pray you will do the things you want to do.

I too so want to kick this illness (whatever it is ) up the arse!! i want to push past and do the things i want to do but i have realised that i also have to take time to rest i have to plan what i can and cant do on a daily time as there will be nothing left for my family to give if i keep pushing when my body is crying out.

I gave in today and slept all afternoon even though there were a thousand things to do as i knew i had to save some enegry for when the kids come home. Im still in this flare and had hoped it would of gone by now but it is feeling abit better.  God Bless You xx

Heather

I too have cried at reading the kindness of these posts of the true frustration that pours out of our lifes i have joyed at the faith that we have also, i believe through this site God is healing our hearts.

Thank you heather for your kind words.

I love you all so much even though we have never met we all know a part of ours lifes that others never see but is safe to express on here.


Love to you all xx