New member to CP Australia, looking for support

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8 years 2 months ago #9539 by BIY
Welcome Kim,

Big hugs to you. And like the others have said, you are not alone in having been misunderstood, abandoned by friends (they seem to forget about us when we can't keep in contact or, they don't know how to handle our pain so they easiest thing for them to do is steer clear).

I am preparing for a work injury court case and having all these medical assessments at the moment and having to write down all my symptoms and journey with chronic pain(I have jaw injury so can't talk much)...and it nearly made my own heart bleed cos it's a very hard road we travel.

I agree with Mary; a pain psychologist that I started seeing this year has helped me a lot with learning how to cope with living with it.

I hope it will help a little just finding people on this forum who understand.

Best wishes,
Fee
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8 years 2 months ago #9560 by titan55
hi kim.your story was really sad to read.no one should have endured what you have been through.i would like to send you some big cyber hugs because i think you need it.you will find if you stick to this forum,you will end up with some great friends who understand chronic pain.i know what it is like to have people screw you around,so to speak.sorry,that was a bit graphic.the public system has a lot to be desired.i know.i wish i could give you some great advice to help you and cheer you up but i don't know what i can say.i am here for you if you need to talk and i hope with all my heart that things improve for you.you are still too young to be going through all of this.hang in there.keep in touch and let us all know what is happening so we can all be there to help you though it all.good luck.take care.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression
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8 years 2 months ago #9572 by Kim_Cooper
Replied by Kim_Cooper on topic New member to CP Australia, looking for support
I'm not sure if I'm doing this right..?
I'm trying to reply to your messages (i can't one by one).
I am amazed, outstanded, astonished (lots of other words to describe being blown away) by all the support and well wishes you have all given me!!
I got more support from all of you than I do from people I once considered special and close to me..
You have all made me feel so welcome and special :) thank you!!

I can't remember everything you have all written so I am sorry if I don't respond to something one of you have said, I'm trying to remember off the top of my head, what I have just read.. Which was a lot! I can't believe all the messages I got in response to my message :) its amazing!

I noticed most of you commented on my age, yes I am very young to be dealing with all of this! Which makes it so much harder for me to come to terms with!
I have not lived my life yet!. I get older people who look at me and say 'well you're only young, what could possibly be wrong with you?!'...'Try being my age, I'm old. I have old bones, you're young'.. 'You are so young, as if you know what it's like being in pain! Try being my age (old)'... I get responses like this ALL the time, from
Complete strangers!! Or even at rehab..
However, I do get a lot of sympathy from strangers too, once they realise my back is really bad they feel bad for me and I get a lot of "Oh no, you poor thing! You're so young and beautiful!!"

It's hard, my old friends are all living! They are married, engaged, traveling etc.. And I'm just laying on the couch.
I'm not living, I'm existing.

If I was 70 or 80 then I could understand, I would take it with a grain of salt and be grateful I had a great life and many experiences..
But to have missed most of my 20's and still going, it's so hard! When will I get to experience life? Travel, children, love, adventure?.. It's very hard to come to terms with.
I feel if I see a pain psychologist then I'm giving up and just coming to terms with it, but I don't want to give up!
I was offered an inpatient rehab program that includes rehab, training the brain, classes, psychology etc.. But to me it sounds like a way to make me give up and learn to deal with my life as it is.
But surely this isn't it? This can't be my life?
How could I ever get pregnant (if I'm able to- whole other story! But I gave LOTS of issues down there and need a hysterectomy) anyway, if I could get pregnant how could I carry for 9 months? And how could I nurse and mind my child?
And, how could I even meet someone to begin with? Men don't come knocking at the door!!.. :)
I feel I am missing so much and it's just the beginning, how much more will I miss?

I can't work, I have no career. I struggle to get by on my disability pension, I have bills and medication and all my spare money gets spent on creams and ointments for my back! And back braces, ortho pillows etc..
Normal people my age buy clothes and party or travel..
I can't save money, so how will I ever buy a house?!
How could I ever rent, I'll never be able to leave my Mums home.

I also need surgery on my hand, it's broken and has arthritis etc etc..
I have sooo many medical problems it's unbelievable!
And I wonder if people think I'm a hypochondriac?!
If i was them I would probably think it, I mean seriously how many problems can one person have?!

And let's not even start on emotional problems!!..

I'm lucky I have my Mum because she is the only person who cares and supports me, not even my own brother calls me (ever) and lets not forget my Father! Ha!
My extended family don't care or support me..
And because I'm with my Mum 24/7 we bicker alot..
She gets really snappy and has low patience, which are not good qualities to have when dealing with a CP sufferer!
She snaps more than I do, I don't think she can handle it..
But I'm always happy, smiling and positive. I never bring her down or moan, and I know most people dealing with what I am would be a nightmare to live with. But I know I'm not. I'm very positive and always laughing.
I know she feels that I'm a burden, she wants her own life and she is stuck with me!
I know she loves how close we are and she would hate if I moved out but I know she would love to get drunk and turn up the music (that's how she deals with things) but I hate being around drunk people, especially her!
And when I'm trying to zone out and relax to take my mind off the pain- the last thing I need/want is drunk Mum and loud music!
So she goes out once a week and gets drunk.
She also works a couple of days a week.,
I hate that she complains about 'our' situation!! She gets to leave! She works, she loves her job!
And once a week she lets her hair down and gets drunk with friends! While I lay on the couch on a Friday and Saturday night.
At least she can drink, she can see friends, she can leave, she can escape and she isn't in pain!!
I'm with ME 24/7, never escape the pain! Never see friends, never go to work, never go out, never socialize, never get to talk about how I'm feeling, never let my hair down.. And worst of all- where ever I go, I'm always there! My pain follows!!

Anyway, sorry for ranting and raving AGAIN!!
I must sound like such a moaner, but I NEVER get to talk..
So now I can't stop! Hahaha.. Sorry!! :)

Thank you ALL for you support and cyber hugs :) much much needed and much much appreciated!!

You're ALL wonderful :)

Thank you again xx

*hugs to all of you*

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8 years 2 months ago #9573 by Kim_Cooper
Replied by Kim_Cooper on topic New member to CP Australia, looking for support
Quick note:

I hope I don't sound ungrateful to my Mum?!
I would hate to come across that way, I am sooo grateful and I tell her daily!
She is my best friend (well, my only friend! Haha)!!

I was just venting..
But I love her more than ANYTHING in this world!!!!

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8 years 2 months ago #9575 by Mary
Hi Kim,

The inpatient rehab program could be your best bet! You have nothing to lose by giving it a go. It certainly doesn't mean that you are giving up. It is exactly the opposite. You would be taking steps to learn some coping strategies. Don't knock these programs because they are the best that we have at the moment. Medical science just doesn't have an answer to chronic pain as yet. The knowledge of what happens etc. is growing all the time, but they still don't have the answer to why some people end up with CP and others don't.

I think that everyone that I know who has a life along with chronic pain has been through a pain management program and an inpatient program would be ideal because you wouldn't have to worry about travelling. It would also give your Mum some time out. It could be beneficial to both of you :)

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 2 months ago #9577 by grappers
Kim I don't see doing a pain management program as giving up or into pain, on the contrary, we all never give up looking for new ways to try and get rid of CP, but in the mean time we need to survive and the tools you learn at these clinics make life a little more bearable while we are. You have your mum for support which is great, any time there are 2 people stuck in one house all the time you are bound to get on one others nerves, hell I only have my wife and she is my carer we have our moments but I would not trade her in for anything, we end up talking about what is bothering us, and it usually the same thing boredom, stuck at home, not being able to go out and the list goes on.

Don

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