Re Advice, FLiss

[Guest guest]

Complaints from a newcomer to all of you brave suffering people out

there with much worse problems than mine, how do you do it?

.. It seems like the future and something to long for and look forward to

has been taken away from me. I am at the moment lucky because I have

been mostly painfree for three weeks, heaven, but there are of course

other symptoms ongoing less noticeable the moment once the REAL pain

starts and I feel like trapped, locked in, still all the practical and

economical problems are there. And I fear the next attack, I have had 5

severe ones in 8 months, going on for weeks. I know that you know why I

am moaning because I know I am understood and I also know that many of

you out there have so much more pain and problems and I admire all f

you brave people. How do you do it I am about to give up, Carpe diem,

but I am not even able to that, I am on Xanox as adviced from the group,

it seemed to help at first but after 2 weeks? Or I

might be even worse without them I am trapped like in a mousetrap.

I am about to give up. It feels as my whole life is a ruin, I am

getting more and more lonely, I used to be a very social person with a

job as freelance guide/interpreter/journalist, allways dealing with

people. I loved to cook, often had friends for dinner it is all gone,

they are tired of my desease.

When I have been at the lowest stage I have just not been able to get up

out of bed, like a skeleton, pale like death, hardly able to talk. That

is when I cant even get out, but when I get better like now I try do

catch up on everything it just drains me. My economy crashed, I need to

work and that means more than full time and I love it. Life is nothing

now, hours on the sofa,not because I am lazy but because I cant stand on

my feet totally collapsed. My friends dont understand, I dont have any

family except for a fostersister who is great but her husband getting

tired of my needs. I have got my cat, he is totally loyal and friends

too but they seem to say well do some fun and nice things come and see

us and they go on about how lovely the food tastes and the wine and

their holidays and work and all of what I am not able to do or enjoy

anymore and of course with me beeing so unpredictable I am not on the

list anymore. I do love opera/ballett/theatre and ordering tickets ahead

becomes a problem. I thought I had had enough, I had breast cancer, a

big benign lipoma (good cancer) in my hip removed (2 pounds, yes 8 hg),

I have low progressive Multiplescleroses, but with this CP on top...

Sonja who feels like a pain in the…….

Hi dearest Fliss! It feels like you are my support out there so close

and even quite a distance by land that doesn´t matter in those

situations, thats great!

and all your wonderful advice.I will try your grilled meat and fish

even if I have a feeling of that meat gives me more bowelmovements and

wind. I dont know, I am totally confused, I dont know what comes from

what. I am getting up the middle of the night beeing hungry and then a

slight feeling of getting that tight feeling around my chest, something

grabbinghold of the inside,

like the beginning of a new attack. Still so hungry and longing for

everything I cant have. I was diagnozed with ---colon irritabile and

CP by symptoms, . Nothing seen on the xrays, MRCP and so on but most

symptoms proving CP

.. I did stop gluten just to try, it feels as if it is working, I can

take the gluten free pasta much better then the gluten one for example

so I just continued glutenfree food

Such problems to find these glutenfree products and the prices, they

dont taste very well either. I might try some gluten products just to

see what happens because this complicates my situation even more. They

are testing my glucoselevels and I just pray for a pancreologist to get

in my way and I will try hard for him to get in my way. I hope you are

having a good time with not too much pain and thanks for your supportive

answers, Fliss your are great, where do you get the strength from even

supporting others when in a situation like your own. Love from Sonja