SEDIMENTARY ME…


chronicillnesslosesam trying to decide WHY i feel so overwhelmingly sad, and realise there would be something very wrong with my pain radar if i didn’t feel it. and i also realise its exactly why i ended up suffering depression. I started going to therapist about 18 months ago, and FIGHTING her – i was NOT depressed – i had been through so much SHIT in my life and not been depressed- i was just angry…

now i have come to realise that a major part of my depression is learning to live with the limitations on my health, and of my health due to my health conditions.

i feel like a sedimentary ROCK.

i don’t want any more layers that stay there…i wanted just ONE thing to be transient..is transient a weird way  to look on a brain surgical procedure??

i am the sedimentary rock.

  • i have chronic, brittle asthma – crashes life-threateningly
  • i have a irregular heart beat – had a procedure holding off on another
  • i have need pain
  • i suffer stress
  • i have a family member in recovery from mental health issue
  • i have an autistic son.
  • my mum has severe alzheimer’s
  • mum also has a severe and probably fatal heart condition
  • i have lower back constant pain – post car accident 3 years ago
  • have osteo-arthritis.
  • have depression because am unable to do ANYTHING, and then unable to do ANYTHING because i have depression!
  • have gained weight as am so sedentary – this puts more pressure on both the asthma AND the heart.
  • can’t do exercise of any type as even walking and swimming are too painful on the back and anything vigorous leaves me breathless and with palpitations. so STUCK..as i am so disabled due to conditions weight gains which doesn’t help the conditions…so its a vicious circle.
  • Oh hubby diagnosed with rare cancer in March 2012…so far all follow ups are clear
  • Hubby took unexpected side effect to drugs given unnecessarily- suffers constantly with a gamut of conditions.
  • have these headaches and neurological symptoms- finally acknowledged as such now for about 18 months…MRI showed cyst in brain. i wanted cyst to be removed and take the symptoms with it.but NOPE. Neurosurgeon was a lovely man, but only thing tat proves benign to me is lump in a petri dish with biopsy report attached.
  • while he was reading scan i remembered a previous scan of brain taken in 2008 – they had noted a herniation at base of brain …we looked back…they missed the cyst! But then we looked to current scan, where MRI spotted cyst but missed the herniation – which it seems is a CHIARI MALFORMATION…and it MAY be causing the neurological problems!! (note 2 scans both read 50% of defects in my brain!!)
  • i see man referred by dentist for frequent ulcers- he suggests geographic tongue and i am called back- he is suddenly looking and me having probable Sjogren’s syndrome! bloods done and at this stage i have no doubt with Murphy’s Law as it is these will be positive.
  • have HAD required BRAIN SURGERY…all stuck back together and recovered…meh
  • recovered to the stage where i have NO energy
  • waiting on my brain-eye issues to be sorted.
  • Have been disconnected forcefully from my music making through terrible forces and through having my own morals used to manipulate and beat me off
  • Have lost my mam and i miss her so much
  • have lost my faith as it was trampled on by too many muddy black feet
  • Have lost a lot of ME…through association at cellular level with that music
  • Will we know have this over riding condition for life…
  • for life

hx

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9 comments

  1. Helen,
    There is no doubt about it, that you are a fighter! You tackled the system and won….got your Chiari diagnosed and had surgery. OK there were many hiccups, before, during and after.
    I feel there is more help for you out there. I know that several others have gone for rehabilitation after a period of hospitalisation/inactivity – a block of daily physio and OT. Yes it sounds scary – but the Helen I know is a fighter and does not give up.
    I just had another wee read of your post back in June when you saw your Neurosurgeon for a review appointment and on same day a physio at your local hospital who said you had “good power , you were so positive after those two appointments. Your NS is behind you and he will see you again soon.
    A few questions now, as with brain fog too I can’t remember all, I do remember there was a nice doctor down in your local hospital who said after surgery he would help you with the autonomic dysfunction, have you been back to see him, or did he skip off somewhere else? Did you have follow up MRI yet? Are you still doing exercises as suggested by physio? Sometimes even exercises done in bed or in a chair are a start but they need to be maintained.
    Keep fighting – recovery takes time, muscles take time to knit, and on subject of knitting – I love the crocheting, must get you onto making ducks for Easter fundraising!! Take care xx

    • He fell off radar. Stopped getting appointments Miriam. Saw OT this week thro community team I mentioned to you. So organising bed lift and a wheelie for me. So no real physio. Very much vestibular planted for now. Eyes very worrying. Xx

  2. Get chasing that nice doctor. I don’t know anything about vestibular exercises – goggling I see it can be eye, head and shoulder movements. Have you been given exercises for limbs? Have a wee look at the ACT physiotherapy booklet I sent you, it will reiterate the need for even gentle exercise, even for those who use wheelchairs. Glad you got to see OT – a step in right direction.

  3. You’ve reminded me of a DVD my mum had- gentle exercises in the wheelchair. Maybe short bursts/ the sound would be enough and you could give it a go? with your eyes closed 😉 ?
    You told us one time about a burst of creativity you’d had and the music you were writing- I hope that comes back to you soon.
    You’ve had a dreadful year, Helen, emotionally and physically, but you will feel better than you do now.
    gentle hugs to you and yours x

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