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Just bleh.

Discussion in 'Rants, Musings and Ideas' started by ThePhantomLady, Apr 1, 2016.

  1. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    I just need to vent about this...

    I have a scoliosis and only got the diagnosis a couple of years ago (because no doctor was allowed to examine me when I was a kid and a young teen...) and that means it is untreated... which is hard to live with. I have chronic pain, and if I am too active it hurts more and sometimes it locks nerves... sometimes in my leg and sometimes all the way to my toes... it has affected my bladder function, and because of my balance I haven't walked right for most of my year, my hip hurts too...

    I have to plan my activities every day... If someone is coming to visit and I have to give my tiny flat a good clean that takes a week... Monday I can vacuum, Tuesday I can clean the loo, Wednesday I can clean the toilet... etc. etc... I live with dishes cluttering my tiny kitchen that has no space already because washing the dishes hurts me especially...

    I am on pain relief... I take pills every 5 hours... It's supposed to be every 6 hours, but the last hour can get so painful I only let 5 pass...

    When my pains got really bad a couple of years ago I didn't want to get on pain relief... I had been addicted to paracetamol as a teenager, and since then I didn't even take aspirin for bad period cramps... and for months all I could do was lie in bed and sob. I lived off of toast I'd crawl to the kitchen to get, and sometimes I'd take a few more slices so I had for the next meal next to my bed as well. Nothing helped... I tried to stretch but it all only seemed to make me worse.

    I saw a doctor, got a special X-ray done... was told 'Its scoliosis, eat pills. go home'. And the doctor added that it wasn't supposed to hurt... but he didn't do more... just that. "It shouldn't hurt. So yeah". I asked him if I could get a scan... I know a few things about anatomy and I was thinking I had a slipping disc or one being squeezed by my twisting spine... he just laughed at me... I kept getting more and more pills... and no scans...

    A long while after I tried PhysioPilates because someone online had said that it helped with her scoliosis pain... that made me worse... I could barely walk for 2 days after a session... but the instructor was a physiotherapist and she assessed me one day when I showed up at the class in bad pains.... she told me I did indeed have a slipping disc in my spine.

    But yeah... my doctors doesn't seem to worry about that... they don't think that happens to a 26 year old. So why waste a scan on me?

    I am just so sick of having pains and essentially being handicapped. I wish I could exercise to help me lose weight, since all my eating disorders make it difficult to lose weight that way (and lets face it, being big doesn't help the pain... but the fact is I'd still hurt if I was skinny)... but I'm not allowed to anything more than walking... and even that hurts.

    Being young and living with this pain, and not being able to do normal things like taking the stairs... and dealing with people looking weird at me when I take elevators just because I don't look sick. And also... my best friend is so careful with me... she means well when she says things like "Can you handle that?" or do stuff for me... and if I wince in pain or stretch she gets worried... and my boyfriend too... when we talk on the webcam I have to get up and stretch a lot... and he always worries.

    Well... months ago I saw my doctor again... truth be told I was wondering if I could get on disability benefits... since... well how can I hold a full time job in this condition? Turns out the only way you can get that is having a mental illness... and on the paper my mental condition is not bad enough either... you have to fit a certain list of diagnoses for that...

    My doctor referred me to a center that was supposed to have some group sessions for people with chronic pains who needed to learn how to deal with it and settle with that life. I was actually looking forward to it... the only person I know with this was my mother, who took her frustrations out on my soul and body... and I never want to turn into her.

    I visited and had a meeting with a young woman there over a month ago... she had a whole questionnaire and went through it with me, they also talked about other conditions etc and I told her I had un-diagnosed PTSD which also kept me inside a lot... it was a horrible meeting and I left it shivering and almost cried on the street going home. She kept asking and tried to dig into what had caused my PTSD... and in the end she decided instead of the chronic pain curse she wanted me to join an anxiety group... with an instructor who was not an actual psychologist or therapist.

    I decided I didn't want to do that... I am currently in therapy with a therapist I trust and I am waiting on DBT to start... I worry about contradicting advice and to be honest... my issues aren't fit for someone who isn't a professional.

    A lady from that place finally called me today... first of all she left me a message and told me to come for an appointment on Wednesday, at the same time as I have my next appointment with my therapist. No way I am canceling that!! And the thing was supposed to start on Thursday...
    I called her back and told her (what I already told the other woman) that I am being treated as an outpatient under the healthcare already, and was waiting on DBT, and I wasn't sure it was a good time to be mixing all that into it as well... she reluctantly agreed with me... but kept telling me I was always welcome to get back in touch, and I should look at the psych clinic for their brochure and see if it was something for me after all.

    Maybe it's a possibility when my treatment at the psych clinic ends... so far it's set to a 20 week thing... though I already think I might need much more than that...

    But that was never why I was referred there!! I came for my back. Damn it.

    Anyway. I'll crawl to the kitchen and get myself some lunch and my pain relief... my daily routine... *sigh*
  2. na-taya

    na-taya Well-Known Member

    Are you able to get a second opinion or go to a different doctor maybe they will do the scans for you???

    I am sorry thay you have to live in so much pain all the time, as frustrating as it is i am glad you know your limits of what uuou can and can't do.

    I'm sorry I don't have much more to give right now I'm shattered. Just wanted you to know i care *hugs*
    ThePhantomLady likes this.
  3. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    Get some sleep hun *hugs* @na-taya . I already changed doctors... but here it costs money to change... unless you have to and it's not your 'fault'... I was lucky that my doctor split up his clinic so I could chose a new one...

    but thank you for your sympathy! I just need to vent sometimes...
  4. na-taya

    na-taya Well-Known Member

    Aww thats a shame about the money situation.....I wish i knew how to help more!!

    *big hugs*
    ThePhantomLady likes this.
  5. ThePhantomLady

    ThePhantomLady Safety and Support SF Supporter

    You help a lot hun!!