Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: annken on August 02, 2011, 02:38:21 PM

Title: a broken soul and spirit
Post by: annken on August 02, 2011, 02:38:21 PM
hello, i am new here.

i am in such a desperate state....
i was diagnosed with primary sjogrens about five years ago.
i had to go abroad to discover what had me so sick i couldnt walk.
i did manage to learn to walk again, and i did it alone too.

i already had crohns disease and had had one ileal resection.
also i had spent over 30yrs in the psych system and then given an apology, recently i was diagnosed with having apserger syndrome which would have explained decades of isolation and terror.
i have hypothryoidism too.
raynauds, fibro and ceoliac.
i am severely deaf and losing my eye sight to macular degeneration and cataracts.
my twin and i both have neurodegenerative disorders.
we are both rubella adults now, my mom was in contact with german measles when we were unborn.

my twin and i were also sexually abused as young children and we had a horrible life.
we are moving out of our county to two small bungalows.  this has had to be done for they are cheap here and i had been shot at by the local kids and i couldnt stand it any longer.

my family and siblings are not supportive in any shape or form.
they have told my twin and i that we both should be in sheltered accommodation and neither of us wanted this.
we defied them and they are angry and very abusive.
i am at my wits end.
right now i am an all time low.
my twin and i have been at odds too with each other and our lives are unravelling daily.
i am worn out with severe pain and exhaustion.
i wish i had some support.
i am in Ireland and Ireland is not known for its broad thinking when it comes to medicine.
for years i was fobbed off being told my symptoms were 'all in the mind'
i forced the neuro to sign a form to get me out of the country to a specialist clinic where i was inpatient and diagnosed.
i also have generalised dystonia, losing my teeth and have false teeth which i am not coping with.
the love of my life is the garden and my chihuahuas.
but i want my heck to end.
i want to feel i can have at least a decade of peace and happiness.
i would not know those words if they slapped me in the face.
i long to be other than what i am right now.
an exhausted rag bag in dire pain and no let up on any sphere of my life.
how can it all happen for one single person?  how can she and her sister be let cope on our own, without loving support and why should we go into a home for the bewildered at the age of 58yrs?
I go to the funeral of my aunt tomorrow.
i loved her very much but in recent years i have been dropped as part of the family.
no one sees me as ill nor having asperger.
i seem to be the devil incarnate even though i make a good friend if people are kind.
i also am very independent and have never asked for help up until now.
what the heck am i to do.
i would love the ataxia and pain to end, for i dont sleep with these two conditions.
my breathing in recent weeks has been very poor and i have a fluttery sensation at times in my chest.
it seems my heart is going too rapidly.
sick of being sick.
a brave person in a world i never pretended to understand.
Title: Re: a broken soul and spirit
Post by: KellyG999 on August 02, 2011, 04:37:48 PM
Annken,

Welcome to our forum. There are many caring people here to support you. It's clear you have had a rough life and I am so sorry.

We will listen and encourage you. I see that things have piled up on you to the point they are unmanagable. That is overwhelming. If you can, try to look at it in bite-size pieces - one thing at a time. That's all any of us can do, it's too much otherwise.

You were put on this earth for a reason. I believe your season of suffering can come to a close. Or, at least become tolerable. We all have our ups and downs here and we share them all, good and bad.

Take a deep breath. People here care about you. I will say an extra prayer for you. Prayer has seen me through a very, very tough year.

KellyG

Title: Re: a broken soul and spirit
Post by: Joe S. on August 02, 2011, 05:49:08 PM
Welcome Annken and your twin. If you two are similar to my wife and her twin you share a lot. I hope you find health and peace in your new home.
To understand your ups and downs I suggest that you read "Spoon Theory" http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic I know that this is a challenge with what you have been Dx'd
2. Breathe. The most important thing to remember as long as you live is to breathe. Breathing correctly will reduce your panic and pain.
3. Meditate. The simple one that I use has been very successful for myself and others.
Title: Re: a broken soul and spirit
Post by: Jellyb on August 02, 2011, 06:10:05 PM
Hi Annken,
Sometimes family and friends just dont" get it " it doesnt make them bad, they are just too wrapped up in their lives to be able to be supportive for you.  So this is a great place to find answers and a shoulder to cry on, and like Kelly said, just take one step at a time.

Sending a hug your way
Title: Re: a broken soul and spirit
Post by: susan on August 02, 2011, 06:38:12 PM
Dear Annken,
I wish the best for you and your twin!
You have been through so much, and I can't help but think of the strength it took to get this far.
I hope your new home brings a bit of a fresh start for you----keep thinking ahead, take one tiny step at a time.
Title: Re: a broken soul and spirit
Post by: Meld256 on August 02, 2011, 07:43:24 PM
Dear Annken,

Let me welcome you to this forum.  ;)  It's a caring place full of warm and understanding people. 

You have been through so much, and are still dealing with so much I almost don't know where to begin to comfort you.  I can say that there is hope here, and encouragement and I'm so glad you've reached out to us!  It takes such strength to tell your story and I admire your bravery through the life you've lived.

Do you have no emotional support when you and your twin move?  Is there any help through a county office of any kind? We have things like social services here in the US where you might be able to get assistance with counseling or help with your living situation.  Hopefully you can have a small garden in the new home and enjoy your dear chihuahuas. I pray that you can find help there close to home.  We have a few members in the UK who may give some advice.

Your last line about being a brave person in a world that doesn't understand breaks my heart but also tells me what a very brave soul you are!  Please keep posting to us.  We care and will try to help in any way possible.

I send you blessings and wishes for hope and peace,
Melinda
Title: Re: a broken soul and spirit
Post by: 12lovehim on August 02, 2011, 08:59:59 PM
Oh my Dearest.. How i wish we could send you a big hug.. You are so not alone.. Many of us have suffered the same fate of doctors saying it was in our heads... My personal doctor cried when she read my blood results.. She knew the 1 inch thick medical records had stated I suffered from depression.. Even though I fought it every time..
I have had 3 surgical "explorations" to find the source of my pain..

I haven't shared this before but I also served in our church and my hubby is an Ordained Minister.. I can't tell you how many people asked me if there was unconfessed sin in my life.. Everyone (even me at one point) needed a reason for me getting ill..  My faith has helped me in my darkest days.. My latest bout of seizures has made my own heart cry out "I don't want to do this anymore".. Heal me Abba Father or take me home..

I am still here, so today maybe it was to tell you that your not alone, that a caring group of people will be here to encourage your Heart, lift up your soul and pray for your fractured spirit.. We do have a promise that this to will pass.. So I bless you that this time passes quickly..

Keep that fighter spirit..

Blessings.. Keri
Title: Re: a broken soul and spirit
Post by: susanep on August 02, 2011, 10:58:25 PM
Welcome to the board. I am so sorry you are having to deal with everything that you and your twin are. People can be cruel without being aware they are or even meaning to.

I said a prayer for you. Everyone here does care, and is ready for any questions or comments or just to listen to how you feel. On this board we do understand each other and the things we go through.

Life is not fair as most of us know.  I guess it wasn't meant to be. Just try to take a day at a time, and sometimes even an hour or few minutes at a time.

 Remember to always do something nice for yourself each day, no matter how small. Find something to be thankful for each day even if you don't feel too thankful. You might choose to be thankful for your little fur babies.

I don't mean to say this all, and make it sound so easy or simple. It certainly is not, and I know it too. I have been here many times crying, ranting, angry, you name it, and probably will still in the future.

susanep  :)

Title: Re: a broken soul and spirit
Post by: stephL on August 02, 2011, 11:52:17 PM
Welcome annken,

Lonliness and isolation are terrible things to endure. I'm glad you took this important step of joining our forum community and introducing yourself. The members here are very warm and understanding as Meld says, and I hope you will be a regular reader and poster here.

You seem to be ready to make some changes in your life.

Hugs and best wishes,

Steph
Title: Re: a broken soul and spirit
Post by: sunnybunny on August 03, 2011, 06:48:37 PM
My goodness, Dear!

you just about said it all.
So honest, such depth. But I see strength there too, that you might not right now. ;)
I can tell you that you landed in the right place.
I say that with conviction ;D
Find yourself a seat,and know that you will find support here, always.
I mean, dont just check in here and there-I mean make this a staple of your day.
I have found GREAT support here, at my very worst of moments.

again, welcome  :)
Title: Re: a broken soul and spirit
Post by: annken on September 10, 2011, 03:59:10 PM
ah everyone,
you have been SO kind here!
i am still very tired and quite ill. i have com out of hospital recently with a crohns flare.
twin has secured her 'forever home' but mine just is not coming, due to my far lower budget on a property. that said i see a very promising one next week poor on the inside but great aspect, light and airy and would certainly do good with a wheelchair user.
it will need a lot of upgrading.
if i get a good bit under budget then i have some left over for upgrading.
twin moves into hers on 21 october. i dont wish to stay here when she does. we are talking of some ways alright to get me away from here at least until i source a safer environment.
take care everyone, lovely people here now i defo know.
hope all are keeping good!
ann
Title: Re: a broken soul and spirit
Post by: Scottietottie on September 10, 2011, 05:07:35 PM
Hi Annken  :)

Welcome to Sjogren's world.

Take care - scottie  :)
Title: Re: a broken soul and spirit
Post by: gold55 on September 10, 2011, 07:06:08 PM
Hello Annken,
I'm new too and I'm still having troubles talking about illness as well as acceptance.  I'm not as strong as others think I am....at least not recently.  You, on the other hand, have strength I can only hope for one day.  Bless you and much love to you my dear Annken.  No individual should ever have to go through what you've been through.  You are in my thoughts and prayers.  Jill
Title: Re: a broken soul and spirit
Post by: annken on September 11, 2011, 02:16:35 PM
hello friends,
i am a bit better tonight.
i had a very good day i think.
i drove my twin and my chihuahuas up the hill this morning, we walked some way up the hill too, snapping with our cameras as we went.  the chis ran around too.
it was good there, the autumn leaves are falling and there is a gorgeous musty scent to the world right now.
people chatted a lot with us.  we stopped at a small cafe at the base of the hill, dogs everywhere!
we came home then and grabbed a cup of broth.
we both were too tired for anything else.
then we went out, i took the mobility scooter in the back of the van and maggie mai and ana chi bundled up in my twins lap and off we went.
maggie mai was in her natty little uniform and so was i.  yellow and black.
i used to be a 'therapy dog' assistant, i assisted my dog giving therapy to the elderly, well actually the ladies used to hug her and stroke her and tell her all their woes.
but today was a funraiser and we were walking along the prom here on the east coast.
many yellows and blacks were out with yellow balloons and dogs wearing yellow too.
i especially love the kiddies present and maggie mai and ana chi snugg in the front basket got a lot of attention.
the wee kids were all around my twin and i.  my twin managed to get a very hansome, long haired man to push her wheelchair, i followed up the rear.
i took some fab pics of the balloons dancing in the air with the blue sky and fluffy skies behind.
it was fantastic.
i am in a lot of pain tonight i have to say. but i am happy right now.
twin has gone to bed on cushions on my floor.
she will be moving to her new home shortly though.
we will be going to the UK next week for me to have a review by the lupus centre there, twin has also made an appointment.
so we will get a good going over!
all the best,
annken
Title: Re: a broken soul and spirit
Post by: Happy on September 11, 2011, 02:40:02 PM
sounds like you had a good day,, take every one you can get,, for every good one we seem to pay for it, with a sprinkling of bad ones,,
Title: Re: a broken soul and spirit
Post by: eyeamdry on September 11, 2011, 03:55:05 PM
Hi annken!

I read your post, smiling the whole time.  What a wonderful day you had.  You and your twin must be very tired.  I'll bet the chi's are tired too.  My daughter just got a new puppy so we are sharing a little in her joy with the dog.  She is single with no kids, so it's good company.

If you can have such a wonderful day like today, I hope you can put it all together in nice weather and do fun things again.  We enjoy having you on the board and think this will help you and your sister with your problems.  We are all great "friends" to tell our stories too. 

My husband and I went for a  walk in a beautiful park today.  I have to have knee replacement soon and I need to keep my muscles strong although each step is painful.  It was a nice day to take advantage for exercise. By the way, my husband is an identical twin.  Take care and please stay in touch on the board.  Lucy
Title: Re: a broken soul and spirit
Post by: annken on September 12, 2011, 11:48:41 AM
Ha!
i paid for it!
i told my sis in law that God is looking in other mansions right now, not my own!
my dad used to say 'in my father's house there are many mansions.'
dad said this to me when i was very concerned of his final destination, being of a different christian persuasion to the one i was brought up in!
i paid.
never mind, still ok really.
going out now to see how my bedding cuttings are doing for next spring.
we have hurricane weather here right now.
very blowy indeed.
xann