Long-term Pain..PERMANENT PAIN…why do I grieve?

i have lots of long-term health conditions.

I have coped with them by adjusting my lifestyle

So even when i retired from teaching due to ill health – in a year when my health was not responding to treatment, i still felt happy enough. I felt like one of the lucky ones. Here was at just gone 42 , and retired on sick pay. I suppose i hadn’t really faced the implications of the health part…it was extremely brittle asthma, neck and shoulder pain,

Last year i really did!

During the few years since i retired i had developed new complications and exacerbations in conditions i already had. The asthma had been relatively well behaved as i had reduced so much of what i was doing, i had an electrical heart defect ..had had surgery on it once, was still was not resolved…my neck and shoulder pain was still there and seriously limited my movement…i had had a car accident – where a van rear-ended me and left me in chronic back pain…and had developed severe and persistent migraines….

I had been checking up on the heart condition when i had a haematoma – a minor complication which required rest. it was THEN while lying on the sofa, that i began to get really down. It was the first time i suppose that i looked at the limitations of each condition, and the fact that at 46, these were NOT going to get better, but were going to get WORSE. What kind of future was that? What would i be like 20 yrs from now?

it was during one of my “poor me” moments when was lying stretched out propped with cushions but was sending a lengthy email that to cheer me up, Jimmy said….”well at least you have a brain!”. That didn’t have the positive effect he was hoping for…i felt pathetic.

When i went to the doctor for a severe and lengthy migraine , not long after this, i was very agitated. He was a young fella, and asked me (presumably when i was hopping of the walls, or maybe just as a potential reason for the blinding headache) did i feel depressed. Well i nearly lit on him! Was i depressed? well if he knew all i had come through …..way worse than this….what would i be depressed for??? what a stupid GP!

It wasn’t long til i saw my own GP…she asked the same question. i told her was NOT depressed but am very agitated. BUT eventually agreed to go TALK to a clinical psychologist. Have no faith whatsoever in local mental health services and was still entirely sure that i didn’t have depression – didnt i get up, get the make up on, hair done every Saturday…was NOT depressed.

months later – and after working a lot to get to any root cause for this counselling,i admitted i was “grieving”.

I was grieving:

  • the loss of normal health.
  • the fact that pilates was never going to be the same
  • that i couldn’t dance at a wedding
  • carrying a handbag is sooo painful
  • playing piano is crippling
  • that i couldn’t go for a walk as my back killed me
  • that life was sedentary as all of my conditions were here to stay
  • that in effect  – THIS IS IT
  • it was like a death!
  • it had NOW hit me that i was disabled…seriously disabled – by the combined effect of my health problems.
  • they are life long, they are probably going to get worse as i get older
  • pain procedures like my spinal radio frequency ablations were going to remain
  • doctors appointments are going to be a way of life…

its strange, am now feeling more acceptance of my condition overall, while they do still frustrate me – one level at which it bugs me, is either due to the inability to exercise or due to the combination of drugs, i have gained weight, which is a NEW layer of complication as it puts serious pressure on all my conditions.

i still hate the sedentary vision of me that my kids have – but do go to lengths to let them know am not lazy. am just not able…BUT am not dying :).

Am now getting to a stage where i am willing to accept that i do need aids – walking, sitting, sleeping are all so painful….and as sore back becomes headache …i have to manage preventative postural adjustments.

if i were in a situation where my lack of mobility would affect the family enjoyment, i will perhaps have to accept help and use a stick – or if extremely tough a wheelchair. – which i should have had the night we walked to the Aviva stadium and half way down the canal, i almost collapsed…

i am going through another stage of the “grief” process now…its the GUILT:

  • guilt at how much help i need from my husband
  • guilt at how my limitations impact on the children

and some ANGER:

  • anger that my conditions are not clearly visible 
  • meaning i can see myself being judged when i put out the blue badge
  • when i get the weight related comments
  • angry that when i sit at piano for a few hours am crippled for HOURS!
  • angry with casual “pace yourself” comments from doctors – how much less could i do??
  • when GPs underestimate the extent that my life is disabled.
  • angry at the fact that despite my LIFE being as it is, i don’t qualify for any disability benefits!

but i now realise, this is NORMAL.

This is an acceptance of how i am…irrespective of labels, conditions, treatments…i have to accept me.

i am trying….and for as long as i can, i will keep doing the hair, the nails, the nice clothes, the makeup…

DOWN….not out!





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