Pain is always " NOT welcome" and we humans have fled from its grip as best we can. My pain is off the scale points - especially at night. I get little sleep.
We can thank the pharmaceuticals (about the only time I do) for a myriad of pills and potions that might help.
Except of course some of those pills have dire side effects and can cause stomach ulcers, bleeds, strokes and death . But in the midst of PAIN no-one thinks of that.
PAIN must be got rid of.
Almost - though not fully for me - at any cost!
roll on medicinal cannabis - yes I'll have that when the Irish Government tries to be intelligent about it - which might take a long time.
We can have access to pain management clinics - which is a misnomer really as here in Ireland its merely a 'pill management clinic'. Where the consultant plies you with ever more medication that's a sleepy-inducing haze of nothingness so life is nearly extinct. Yes the PAIN is gone but you feel shit and dead and can't do NADA. Well that's no good.
I abhor how my head and body feels on high pain medication. I feel sick, dizzy, constipated (always a side effect) and generally so damn awful I almost prefer the PAIN with a clear head!
If you reject the pain meds you are seen as 'uncooperative' or 'un-teachable' in the PAIN stakes - wasting consultants time. You are discharged as 'untreatable' due to rejecting Consultants advice. How dare you!
Proper PAIN management is holistic. It doesn't just rely on pills or potions. PAIN management is a skill. A highly tuned medicinal art perfected in the Hospice movement - palliative care.
But my experience of PAIN management in CHO6 HSE area Co Wicklow, has been the 'pills' only type. STRONG pills - I mean morphine. I can only tolerate 5mg of Morphine, anything higher I'm under the table like a drunken sailor.
I have a Rare neuro-muscular Disease - my heads not 'right' . I blame my brain for my non-tolerance of pain medication, and I blame CHO6 HSE Co Wicklow for very, very poor pain management indeed. More can be done - they just don't care - or is it plain incompetency?
The Irish health service (HSE) do not consider other options. And there ARE other options for PAIN relief. May not rid you completely of the demon, but certainly eases the edges of it. Enough to make it bearable or get some sleep at night.
A good bed to sleep on, if like me, osteo-arthritis has crumbled your spine, hip, knee, neck, shoulder a good bed, mattress, suitable for an ARTHRITIC body is essential.
But the only mattresses for a bed the HSE CHO6 (Co Wicklow - where I live) allow, are for those who might have 'skin integrity' problems/ That is the person prone to bed sores - which I am not - yet!
These are foam mattresses and Air mattresses, neither suitable, nay totally contrary to Arthritic PAIN care. and if you don't fit this criteria of 'pressure relief' they don't know what to do. Am I the ONLY oldie in dire pain in Co Wicklow?
The HSE do not do beds at all really. The concept the BED is a clinical tool for PAIN management is alien to the PAIN management team. Actually there isn't any such thing as a HSE area primary care 'pain management' team.
Because the BED is normalised meaning 'comfort, you supply yourself' . nothing to do with US unless you have 'tissue integrity' problems - which I don't.
So discount BED in HSE PAIN care. Though they did, a few years ago, give me a hospital type bed as I needed help to move in bed.
Me in my home 'hospital' bed with Doggo for comfort.
But hey, they did offer a new bed last year, a NEW hospital type bed and I was agog with delight, glee and excitement. It arrived, the delivery man came into my bedroom and saw my 'old' hospital bed.
The 'new' bed which is the same as the 'old' bed!
"is that yours?" he said "yes" I replied, "but that's the same bed as I'm delivering" . It was NOT NEW as in different. it was the same as my old one. And what did he do? he dismantled the old bed, and 'delivered' the 'NEW' bed (the same bed type) because that was his job - to deliver a NEW bed. So he did. Only in Ireland.
So discount 'bed' as CHO6 Area Co Wicklow's chosen means of relieving PAIN.
So what do the HSE CHO6 offer?
Physiotherapy?
Yes, but only 4 sessions (or is it 6) every 6 months. A blast and a whoosh and then you are discarded. Completely. In fact you can go longer than 6 months... Here's two CHO6 Area stories:
- A woman with Parkinson's NOT taken to a special Parkinson's physiotherapy group as they 'don't supply transport'. In fact the HSE are obliged to facilitate this if the physiotherapist had advised it - she had! The woman never got to this group.
- a Woman had a stroke, went into Donybrook rehab and came out walking. But having NO CHO6 physiotherapy offered on return to her home, she is now using a wheelchair. The services disabled her. She should sue - but probably won't.
So, physio is so sporadic as to be totally ineffectual. In fact, you can say, it really doesn't exist for public patients in the community. NADA. Just go away - don't bother us.
Hydrotherapy is often argued the really best form of exercise for Arthritis. I've been advised by a specialist Irish physiotherapist who assessed my gait in CRC that I should be in a pool twice a week.
But no hydrotherapy pool around my area allow ME in. I 'don't fit in' as their client.
I am not a child, (enable Ireland Bray),
nor part of a rehabilitation programme - (National Rehabilitation Hospital Dun Laoghaire)
nor dying - though I have had cancer, (Blackrock Hospice - who DO allow a mother and baby group but not an oldie like me in excruciating AGONY)
So I can't avail of the warm pools reasonably close by. So bugger off you old woman in dire AGONY...you can't come in and NO HSE official will press the issue. NONE.
So where does this leave an older, 64 year old, in dire agony - PAIN - who in area CHO6 Co Wicklow Ireland gets no pain management or help whatsoever. (Please do NOT insult my intelligence to say 4-6 sessions of physiotherapy is a service. its NOT - its an insult.)
well as I've said 'holistic' in PAIN management is simply not done in Public HSE Primary care. At least NOT in CHO6 Co Wicklow.
Should we accept this?
NO
do we accept it?
Yes
but not me - I complain, I shout, I argue, but get no-where because I'm an old 64 year old who should be shoving of out of HSE care over the rainbow bridge and be gone.
But 'I'm NOT DEAD YET' and I'll still fight for PAIN care.
margaret excellent description and i know the 'feeling' its bad. very bad
ReplyDeleteThe latest physiotherapist suggestion is that myself and twin could access (he's telephoned them) the local swimming pool where the temperature is 30 degrees and only costs e2.50. Well Mr physiotherapist I've been in that pool, several times and it isn't 30 degrees and if what I felt - freezing friggin artic cold, is 30 degrees then either I have body temperature control problems or the pool operators told porkies to you. And of course I must be wrong and the pool operators right! This is the problem - I'm never believed. If I say its too cold - my muscles go into spasm - I'm told its NOT too cold based on someone else's 'assessment' of the pool conditions - on the phone NOT in the pool. You can't win with the HSE , the patient is ALWAYS wrong, mistaken, misinformed, ignorant or if all that fails - plain BAD!
ReplyDeleteI use the local public pool, often not during summer months when the relative water temp is too cold to move slowly. I tried to get membership for the pool paid for by the HSE, but it was counted as a discretionary payment, i.e. through "Community Welfare", and my local CWO knows better than the GP and physio recommendations I had. So she didn't authorise it being paid for. It's been paid for a few times by Vincent de Paul, but it's such a horrible thing to have to do that it takes me months to try and renew.
ReplyDeleteI managed to get a new bath lift out of the local OT because they had one sitting in a store-room. They hadn't approved funding for a new bath lift since I got my first one seven years ago. Again, no consideration for what pain management really entails