50 shades of day.

pick a day.
ANY day.
50 different feelings? easy. Let’s separate into highs and lows.
  • I am a brain surgery survivor.
  • i have a chronic life limiting condition.
  • in 12 months i have had, survived and recovered from brain surgery,
  • accepted a wheelchair as part of my life,
  • regrown my hair,
  • lost my mum,
  • been very hurt,
  • had a 50th birthday and celebrated IT with a party called #lifestooshort where we raised £880 for our local NIRDP – rared diseases charity.
  • ….


Even there…a SPECTRUM of colour….so here goes…sad-love-quotes-people-change-memories-heart-broken-pics-pictures-sayings

the lows:take hand

why are the negatives always way easier to get on paper? is that being irish?  i think i want to go for it first so i can end with the positives… So here we go…

  1. hard to waken my brain now.
  2. have to sit down to put on make up and dress now.
  3. chronic pains and nausea. always.
  4. sedentary lifestyle. entirely.
  5. feel a burden to my family – especially my husband.
  6. can’t walk any distance without leg difficulties.
  7. balance problems.
  8. sleep ALL mornings.
  9. another sleep needed in the afternoon. constant inexplicable fatigue.
  10. chronic loneliness. i don’t see anyone…other than on social media.
  11. GUILT over the fact i can do so little and yet can’t change this.
  12. miss my mother. almost a year.miss her so much.
  13. i feel the loss of 4 people- just those 4 i loved – in a situation where i could not prove how right i was still hurts me.
  14. injustice still gets me. not when i am awake but i still dream of what should have happened.
  15. worry. hard not to with illness.
  16. acceptance involves an element of fu** it-ness. An aspect of “if only”… but i am improving at this.
  17. my brain, disordered as it is, is still cognitively so ABLE. frustrating and misleading me.
  18. my life has changed socially, to NOT able to be socially.
  19. my routine is depressingly poor….and depressingly repetitive.
  20. miss my faith. got damaged. my faith in people and in a way spilled into my faith in practical ways. so detrimental. so challenging. so uncomfortable.
  21. i exist in a parallel state in medical terms where i don’t really know how my future unfurls, how even my short term management works…who “owns” me. i described it recently as medical limbo.
  22. my last night out way 17th November. my birthday.
  23. since summer i have taken ONE DAY as a day trip with my children to Belfast. one Day in 6 months.
  24. feel worthless now as i write this.
  25. invisible me again. the shadow left where i used to occupy a  mother’s space.

the highs:Friday-Fun3

  1. i am alive? VERY much ALIVE.
  2. i have 4 fabulous children. i know i doubt how they “see” me, but i love them!behind every child
  3. my OH has somehow merged int being father and mother in a “do” way…cooking, mum runs, football runs…laundry…couldn’t  manage without him. (but is all too easy to diverge onto a guilt trip again here!). i can only HOPE that my daughter finds a partner who will protect her, spoil her, love her always and look after her as her dad has for me.usnow
  4. my mammy has left me so many, many happy memories of days when she was well.Thank God.
  5. my daddy is so awe inspiring. He shielded her from the world’s eyes and tongues, until her alzheimers was safely under his management and care, where it remained all of her remaining life. We are so blessed to still have daddy.fragile
  6. my sister. i love her. (would love to see more of her but she has a very busy life and i know that). She is close by.sissheels
  7. music. Music has been at the root of the most harmful experience in my world,  and yet music has allowed me to rebuild a me…a new me..wiser and more careful…and protected by those around me. music has “rebuilt” me- healed the physical and emotional scars i have gained. Music has helped me realise how to recover. Brain surgery? Bullying? Pain? it helps them all.mozart effet
  8. if i look through my friends, i have some of the BEST. i may not see them often but i have them if i call or perhaps before i get to call.
  9. this body is working ok. could be MUCH better. but i have some use of my legs, and the eyes. and am managing. as long as god doesn’t change the plan without telling me too soon!shoeswit
  10. my brain and functioning at an “academic” level is fine. (allowing for my unexpected naps to recharge!) i have adjusted to recharging and then functioning again.
  11. my consultant is “interested” in my shitty condition. He knows it is n curable, and it has many symptoms, and that they will progressively change… he never pretends otherwise. So i am lucky he is HONEST and he is happy to think outside the box of norms to see how else we can help, and join up thinking with other specialists. THAT is not the norm. but it is what i have.chiarime
  12. in all my teaching, musical directing years i have fallen out with so few, and my colleagues respect that. I have remained in contact with and made friendships, lasting friendships from teacher-pupil relationships. i still do!. i love that eclectic mix of people. i have people who will help. When i undertake a musical venture, i do so with knowledge that i have a network of reliable friends who, if and when i would be taken poorly, would not leave me stuck. My midlife challenge…to learn the accordian. will medically help my fingers keep their tone.,…i hopemidlifmusic
  13. i am known for taking a stand. Campaigner for better….education, healthcare, justice… i will always TRY. this has evolved with my tolerance of bull***T and unfairness becoming ZERO. rd4
  14. i am not ready to be written off – nails done to perfection, fortnightly.nails
  15. hair always cared for and make up on…yes i sit for the time that takes, BUT i still do and that is a positive. my many combover patches are reGROWING and skillfully hidden with help from a great friend my hairdresser.photo 5 (11)
  16. my OH supports me to allow me to spend pamper time. a massage, a sale shop, new make-up. if i lose my interest in these things, it would not be me. pinks
  17. i get up everyday and pick an outfit rather than fall into the outfit. it takes TIME, effort and is now as much of it as possible, while i am sitting down. But i DO IT! pinkier
  18. i have a new choir. build from NOTHING but willingness of friends to stay together. people who have nothing more in common than ME. made contact and 4 months later is a highlight i my week. my musical friends…willing and eager to perform, and ever rehearse. the real nerds 🙂directormusic
  19. i am now  an addict to crochet. What was a hospital rehab, is a daily MUST DO…and i love the sense of seeing it produced by my hand. blanket number 4 almost finished…and 5, 6, and 7 planning. no 4
  20. i have learnt that LIFE is too short. it is.too short to :
    • wear boring clothes
    • put off saying what you need to say
    • not tell people you love them
    • we never have enough time- make it.
    • to worry about things we can’t change.
  21. I turned 50 DISGRACEFULLY, as i felt it appropriate to spend the day with people i loved. I invited people i cared for and so many came. It was to acknowledge that #lifestooshort and while partying we also raised £880 for a chosen charity- the Northern Ireland Rare Diseases Partnership. As my neurological condition falls under its umbrella. And it is so short…i wish those who didn’t attend understood that. 20141115_0051_Helen_50th_Gaels
  22. i am good enough. i ALWAYS was.boring clothes
  23. i only have to please and be judged by god, and i am moral enough to deal kindly and that is the basis of my new faith Featured Image -- 8400
  24. my talent can still help others. i have to be answerable to God on how much i used that music so i have used it again to be fullest of my ability.wish to sing
  25. in time, the truth reveals itself…it doesn’t matter how long.  i have learned wisdom with this year of recovery. Recovery in MANY ways.truth3stages



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