fed up entirely

[annken]

I just dont seem to be able to deal with my new self of disability.
after a day at home i decided to take the two chihuahuas to the sea and walk along the prom.
it was to be a very short walk aided with a walker or rollater as we call em here.
I hated it.  i couldnt multi-task and stumbled a few times, put my hand up to adjust the sunglasses and knocked them sideways and then stumped toe on the wheel of the rollator.
was SO self concious with my bad walking the ataxia and the dystonia, so concious of my false teeth which now look quite unsightly.
i felt an idiot.
i took the chis up on the way back to the van, put them on the seat of the rollator, and tried to hurry as quickly as i could back to the van.
i then nearly fell against a crack in the sidewalk, the chis fell off the top and i wished the road would open and swallow me up.
i got back to the van, shattered and sweating and feeling i would pass out.
i dont know what it is.
these walks used to be so natural and so non-threatening.
now i hate it.
everytime i make the decision to face the world i brave the trip only to be deeply disappointed and more depressed.
what ever happened my brain when i got sick.
its as if there is too much to concentrate on, the walking and the lights and movement of all around me, and then the confidence has completely gone with the 'new me\
how you regain some sense of self is anyone's guess.
i feel like becoming a hermit.
i just cannot do this anymore.
i do have asperger and stuff but still i used to be able for this.
what the heck is happening, do others feel similar since they developed sjogrens.
i have primary sjogrens syndrome and many other conditons now.
some experts say its cos i am a rubella baby as my mum had german measles when my twin and i were in the womb. very dangerous.
we are both deaf, but twin hasnt got sjgorens but does have dx parkinsons, and i have dx generalised dystonia.
help, i do need help on this one.

[KellyG999]

Annken,

I am so sorry it was so difficult for you to take your walk. It sounds like you and your twin have faced many uphill battles. But you are strong, you are still here, still fighting. That is amazing.

Maybe try some samller outings. Maybe a little walk around the yard? If you start small you will build your stamina and confidence.

I don't pretend to know all the hardships you face. But I know you are one of God's children, worthwhile and precious.

Keep in touch.

HUGS

KellyG

[irish]

I can't begin to imagine what you are experiencing or feeling.

All I can say is that it sounds like you chose a very difficult task to do right off the bat. I think that it is very hard to deal with a walker plus other things like a purse, dogs, sun glasses, etc.

If it was me I would go very slowly. In fact I would probably drive over to the area I wanted to walk and just park and enjoy the air and the scenery. This gives a person a chance to scope out the territory. Also, multitasking doesn't work very well for any of us anymore. If you decided to fix you sunglasses I would suggest that you stop walking and pause and think specifically about what you plan to do.

I have walking and balance issues and I learned long ago to always know where my feet are in relation to the ground.d I also walk slowly and watch the ground a lot as I must watch for curb and anything on the ground that could jeopardize my balance and put me on the ground.

It makes it a trial, but it is the only way to do things. I learned long ago that I must plan some of the tasks in order to survive. I make sure that I have a place for my water and my purse when I go to the store. If I must use the electric cart I have to plan that all out also.

Nothing is "natural" anymore as we must think and plan in order to survive. That is ok. I don't care what other people are doing nor do I care what other people think of me. Sometimes I do something really stupid and I have learned that a sense of humor about my own frailities is a good thing to have. If we can laugh at ourselves in the midst of chaos we can survive anything.

You would be surprised at how people smile at me and say a few words and don't really pay that much attention to what I just did that was stupid. Mankind is not perfect so don't expect perfection of yourself as you will wear yourself out.

Keep things simple and you will enjoy life better. Taking a short trip to the store or shopping center with your walker and just sitting in a cafe and drinking coffee and watching the world go by is very nourishing to the soul. We get out amongst others and feel like we have touched base with the world in some small way. Keep trying Ann and just keep it simple. Life will be so much better for you. Irish

[gold55]

Irish, you write so eloquently.  You listen and give responses from the heart   You have a way of simplifying some of the most horrendous events and feelings that we all share. 

Ann, I'm sorry to hear you are having difficulty.  I wish I could express my feelings as well as Irish.  My prayers are with you.  I think Irish gave you some great ideas.  Take care and rest.     

[irish]

gold, Irish says "golly geeeee" blushing and kicking the sand!!

Some days I doos and some days I don'ts. I just write. It must be my age and thank you for the nice comment. Irish

[Joe S.]

As children we always tested our limits. With this disease and its changing challenges we continue to test our limits. We grieve for our losses as the changes happen. Annken, you have a lot of health challenges to deal with in just the ones that you mentioned. (((Annken))), as we find what helps us manage each symptom our life does seem to improve. Hang in there. Keep trying to find what works for you to manage the challenges that you face. With what you have had to deal with in your past, I believe that you can find the strength to handle the new challenges that you face.

[annken]

yes, indeed a lot is happening.  i am in a vulnerable housing situation and live amongst boxes piled high and rollators and wheelchair in the kitchen and bathroom.  the washing too is hung up in the kitchen.
to use some of the cupboards in the small kitchen the washing has to be dragged into the tiny hall, but before that, the rollator has to be put in the bedroom and the wheelchair into the bathroom.
in order to move from one room to another, some appartus has to be moved out of the way.
its 45sq metres of heck here.  i want out but it doesnt seem its going to be before winter.
i live amongst alcoholics, placed here by the council.
no one seems to be able to get me out into safety.
i have not been sleeping.
for the past week its been off richter, 3am, 4am and last night 6pm  i am in a heck on earth. 
i cannot breathe in this place, i am suffacating in distress.

[Joe S.]

Thank you Annken for telling more of your situation. I now understand your desire to escape to the beach. It sounds like you are not in the US and can not use the ADA to help you to a better situation. There maybe other programs where you live that will help you relocate to a safer environment. Keep Asking. Keep Seeking. Keep Knocking on doors.

As you ASK visualize in your mind what would be the best situation for you. (((Annken))) Hugs.

[gold55]

Annken,
I know it's hard for some of us to cry.....it makes my eyes swell and burn for the day after or two but sometimes it helps.  You may be all cried out by now with everything you've been through!  I just read this simple line, no author mentioned but it sure summed up my life.
"People cry and it's not because they are weak.  It's because they have had to be strong for too long!"  When we've been strong and independent most of our lives or even part of our lives, it's very hard to take a weaker position or to believe that we cannot do some of the things we used to.  But it's inevitable whether we are just getting older or we are getting older living with a disease.  I don't know about you but sometimes I just have to cry to realize that I have to learn to be a different person from what I was before.  My thoughts are with you on your journey.

[jstroble]

Hi Irish

I know you weren't writing to me but your words mean so much.  I have fallen 4 times in the last week and  am feeling pretty bummed out.  I am going to take your advice.  You always have such thoughtful and kind advice.    Thank you. 
'
'Joyce