Author Topic: help please - very long post with triggers  (Read 6549 times)

purplecat

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help please - very long post with triggers
« on: 16 Jan 2012 05:40PM »
 I don’t really know what to do next, need some help and advice please, not been posting much lately, not enough spoons.  I have CP and an incomplete spinal injury – full time wheelie.  All my life I have been really active, went everywhere, did everything, sports, travelling, full time employment – stairs and inaccessible places didn’t stop me – I would get out of chair and ‘bum’ up the stairs, or into friends/families homes.  In fact I managed  without my chair at home – the physios were insistent to my parents, that I were not allowed to use my chair indoors, and no they didn’t need to move to a bungalow – going upstairs would be good for me.  This was all done with a regular NHS standard issue 8BL (heavy and uncomfortable).   All this time I was doing a semi-standing transfer, putting weight through both feet and both arms.
About 10-15 years ago I started getting twinges of pain in my shoulders – GP told me that it was wear and tear, due to everything I done in the past and to rest my arms more.  I started to have help with personal care, and bathing for the first time in my life and as I’d always been fully independent, this was a tremendous hurdle for me to cope with mentally,  it took me a long time to come to terms with this.  About this time I was also losing control of my bladder and I ended up having a SPC – this was due to damage to the spinal cord.

I started to use a powerchair, occasionally but now it is full time.  Despite this, I didn’t qualify for an NHS one, and it was only thanks to my lovely Dad who bought me a Quickie Salsa with the tilt and rise feature.
Just before Christmas I got sciatica, which meant I couldn’t put weight through my left leg when transferring, so the left shoulder got the brunt of it.  I was popping pills right through Christmas, tramadol and paracetamol, which weren’t much help, then I were put on Naproxen, dihydrocodeine and paracetamol.  This all had a detrimental effect on my bowel function, first constipation and then last Friday, the opposite effect.

I was getting ready for bed on the Friday night, it had been manageable during the day, but as I got ready it got worse. After lifting myself off the toilet 2 or 3 times I made that transfer for last time, but it triggered another bowel movement, a messy one (sorry TMI I know) and I was in far too much pain to do anything about it, so I got back on the toilet and announced I was staying put for the night – was due care in morning, they would sort me out.  I had pillows on my chair and spent the night alternately leaning forward to sleep on pillows, or reading on my trusty Kindle.  Next day I got washed and changed – spent whole day in bed resting and catching up on much needed sleep.  I got out of bed to eat later, getting out was easier as I could lead with my good side – but getting back was dangerous, it hurt and I was very unsteady and felt like I was falling, I wasn’t doing it alone, Nick was helping – but he has balance problems himself and cannot do much – but main problem was his mental health state – he thought that my screams of pain, and the cries of I’m falling were because of some failure on HIS part, and got upset himself, same happened today as I got back into bed, and we ended up screaming at each other and it wasn’t very pleasant – I KNOW I need more care and most possibly a hoist – but how do I get my head round this latest deterioration,  to me it spells total loss of my independence, now that I need help to go to bed, I will always have to bide by times, be home before 10pm etc, and what if I need the toilet during the night – what do I do then?

And, what happens if we go away? It’s already affected by the fact I need care, so we only stay away for a maximum of 3 nights, so that I      can manage with only a strip down wash, something I can do without help, in a hotel bathroom.  Both our families live some distance away, they both have properties that I cannot access, and due to the fact that both my Dad and his Mum are elderly and cannot physically help us – we end up meeting them in a bar or café, we don’t mind that. But we both have younger siblings who either don’t care about or notice that we are getting  worse.  I have NEVER been in my sister’s house for instance – my wheelchair would damage her pristine carpet and damage her showhouse home.  She won’t visit us, as she dislikes our cats – I could say a lot more about both my siblings – but it’s not directly relevant to the advice I am asking for.

How did others cope with worsening disability?  I was never told that it would get worse as I age, that CP was non-progressive.  Recent scans have shown that my spinal damage most probably was there since birth – maybe that it caused the original disability nobody knows, all I know is that my current situation is driving me slowly up the wall with frustration as much as anything else.  I have nobody to confide in, my mum is no longer with us and my dad wouldn’t really understand – it was mum that accompanied me to all the appointments.  My other sister lives on the other side of the world – she emigrated to Australia four years ago, and this is not something we can just chat about over the phone,  is there anywhere I  could get some support like councelling?  What have other ouchers done in a similar situation?

If I try and discuss it with my partner, he also gets upset, and blames himself – he did mention suicide, but then he often does say that if he’s having a bad time himself infact I am dreading this evening, my powerchair broke down yesterday and he has taken it to be mended – has to go to the repairers over in Aylesbury about 20 miles away – we were arguing before he left, its 5pm now and he’s not back yet.  I’m sitting in bed – thought it would be best and safest place to stay,  I’m in total darkness now, can’t reach the light switch, hope he is not much longer and is ok

sorry this is so long and I hope someone will read it

Hurtyback

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Re: help please - very long post with triggers
« Reply #1 on: 16 Jan 2012 05:45PM »
purplecat  >hugs<  I am sorry that I am not able to offer advice, but I didn't want you to think that no-one cares.

Sunshine Meadows

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Re: help please - very long post with triggers
« Reply #2 on: 16 Jan 2012 06:17PM »
Purplecat.

>hugs<

I have CP too and was also told it is none progressive. I think the problem is that when I was young most neurologists used CP as a catch all diagnosis that to a degree described symptoms which did give people like me a way of coping with being disabled. There is not a week that goes by when I dont question the fact of why I am so much worse and want it not to be true. The way I try to deal with it is say I used to be able to do this and that, and now I can't. I am still me but a different kind of me.

ditchdwellers

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Re: help please - very long post with triggers
« Reply #3 on: 16 Jan 2012 07:15PM »
Purplecat  >hugs<

adjusting to changes in your condition is hard.  I know I made many excuses for myself when my condition worsened, and it took quite some time to accept the situation.  I'm afraid I can't offer any practical advice, only it will get easier to accept.

Firstly, both you and your husband need more support.  Call your social worker if you have one; if you don't have one call Adult Social Services and ask for an assessment or reassessment.  Do you get Direct Payments?  I have direct payments and employ a PA to help me, on my terms.  It's transformed things for me as I can have help as and when I want it and not to someone else's timetable.

The second thing that helped considerably was a carers assessment for my husband.  Again, this is arranged through Social Services.  Having a carers assessment meant that my husband felt that his needs were taken into consideration and that if there was an emergency he had someone he could call.  Here's a link to my local carers support services so that you can see the types of things on offer.  It will vary depending on what's available in your area:

http://www.westsussexcarers.org.uk/

Disability can have a profound effect on relationships.  Relate may be able to help, or perhaps ask your GP to refer you to a counselling service.  Sometimes they are attached to a GP practice, so it's always worth asking.


Sofie

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Re: help please - very long post with triggers
« Reply #4 on: 16 Jan 2012 07:38PM »
I am in the situation of worsening disability. Although, we don't know whether it's worsening disability or because doctors have only just discovered other disabilities that I have, whose affects were blamed on other stuff.

 >hugs<

purplecat

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Re: help please - very long post with triggers
« Reply #5 on: 16 Jan 2012 08:43PM »
thanks for all the replies, at least people on here care, which is better than in real life.  I am on Direct Payments but on the absolute minimum - one hour per day Monday-Saturday - I have a lazy duvet day on Sundays, stay in my pjs and slob around, and 2 hours per week for domestic help.  My partner gets NO help at all, despite having rheumatoid arthritis, insulin dependant diabetes, and bipolar/clinical depression - because he needs no personal care, he gets nothing.  We are together 24/7

At the last review I asked for more hours - we find domestic tasks difficult and they build up.  I have carers coming in from an agency - as it is very hard to find a PA that will come in just for 1 hour a day, if I could have 2hrs per day it would make it easier, but especially since before Christmas, and the sciatica I take much longer to get ready in a morning, so there is less time to do other tasks - I used to do as much as I physically can and that is getting more and more difficult to do, I feel like such a lazy slob as the house is a mess, I am ashamed of it and me, but can't begin to tackle it.

Also I have family problems hanging around - my nephew in Australia turned 21 in November, I couldn't afford anything then but last week managed to send him £50 as a belated birthday present - sent it via my sister as I didn't know his details, thought it would come in handy as he and his fiancee are just moving into their first home.   I know it has got there as my sister told my Dad on the phone.  I was hoping for a least a message on Facebook from him and Sarah, but nothing.  They are getting married next year and my two sisters have been discussing this, and hoping that Dad will go too - no mention of me, I'm just the embarrassing big sister in a wheelchair - it would ruin the perfect image they have out there. 

Sorry I'm just waffling on and on - I don't know how much more I can cope with

sherbs

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Re: help please - very long post with triggers
« Reply #6 on: 16 Jan 2012 08:59PM »
 >hugs< Purplecat

I feel your pain, another one here with a progressive spinal injury, the last 5 yrs I have been going downhill.  I so feel for you.  I have no words of advice, but just know that i am here for you, and anytime you want to talk via pm or vent on this board, please do.  I think you may have to insist that S/Services provide more hours care, let them know exactly what is happening, i know its hard, very hard.  I self referred to our local O/T, they sent one out to me at home to see how they could help, put up a grab rail in the bathroom for me to hoist myself over the bath and into the shower, then discharged me!!, It is so hard to come to terms that you need more help, but you do, and so does your husband, please see if you can get him a carers assessment it may be of some help.   >hugs<

booboo

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Re: help please - very long post with triggers
« Reply #7 on: 16 Jan 2012 09:26PM »
 >hugs<Purplecat

Cant add anything useful but hope the advice given so far is helpful to you.

Sometimes when people arent listening (dr, any medical prof. family member/s) is best to shout a little louder till they do hear you and start listening.  Try and identify what your immediate needs are and go from there. 

If you sort out things that help you then you arent losing your independence - more like getting your life organised so you can put your mind to other use.  Think of it as organising your life so it is easier for you to do what you want  >hugs<

ditchdwellers

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Re: help please - very long post with triggers
« Reply #8 on: 16 Jan 2012 09:28PM »
It really does sound as if you need more help than you are currently getting.  It's not safe for you to transfer easily, neither is it safe for your husband to try to help you.  I know this may sound silly, but have you fully disclosed to your social worker just how difficult things have become for you?  If you are only just beginning to realise how much you have deteriorated yourself, then do you think it may have been possible that you underplayed your needs at your assessment?  It's so easy to do, as none of us like to admit face to face with another person how much our disabilities affect us.  We are so used to putting on our 'public' faces that it can be hard to admit just how much help we need.  It's a bit like the feeling you get when you first fill in a DLA form.

Your husband has a right to a carers assessment.  My husband was given a grant to pay for a cleaner to come in once a fortnight as the domestic tasks had just become too much for him to cope with and we both hated living in squalor.  It really was that bad, and I felt so embarrassed if anyone came round at the state of the place; the cleaner came in to do a whole day deep clean before she started regularly, and I had to go out for the day as I was so ashamed at how bad things were.  When I came home and discovered that she had only been able to do some of the things I had wanted doing as it had taken such a long time to get rid of the accumulated grot and grime I felt even worse!  It took a while to get used to having a cleaner, but she was lovely and having a home that was clean (if not tidy!) made both myself and my husband feel much better.

To have family difficulties on top of everything else must be hard.  I'm not very good with family situations myself, so hopefully someone else may be able to advise you on that.


purplecat

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Re: help please - very long post with triggers
« Reply #9 on: 16 Jan 2012 09:50PM »
My hubby did get home safely with a working power chair AND fish and chips which solved the problem of what to have for tea
We both apologised to each other, and realised the argument was fuelled by both of us, no one person to blame - I didn't know the level of his pain today, but he is sometimes like the little boy that cried wolf - both now in bed and in pain - thank goodness for laptops and kindles

devine63

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Re: help please - very long post with triggers
« Reply #10 on: 16 Jan 2012 11:05PM »
Hi purplecat

worsening impairment is the pits - as you have eloquently described.  As a rough rule of thumb, I would expect it to take 6 months or so to adjust to each new impairment or change which arises.  You can get counselling for help with the adjustment process - but may have a long wait on the NHS if they will do it at all.  If you can afford to go private see the www.bps.org.uk website for their find a therapist function.  The other possibility is to find a disabled people's group - ask local library and health centres and disabled advice centres, if there isn't one, set one up!

  In the meantime, try to see it as the right package of support, adjusted as necessary, will maximise your independence.

Thinking about practical things:
ask for that re-assessment by the OT and tell her everything you have said here - they should consider:
more care hours for you and a carer's package for hubby
- a closimat toilet (washes and blow dries!)
- a proper hoist or possibly a shower chair high enough to allow you to manoeuvre over the toilet so no transfer in the bathroom (e.g. move into shower chair in the bedroom)
- possibly other adaptations
- automated environmental controls for your house so you can remotely turn lights on / off, open front door, etc.
- either look into those emergency call devices which have a necklace bit and a phone which allow you to call help to you in an emergency and / or take your mobile phone everywhere including the bathroom, so you can call for help if needed

your nephew in Aus has bad manners - common these days sadly - so send him a little email saying you wonder if he has received your belated present, as you haven't heard from him.... he should be embarrased!

re visiting people - look around, there are some hotels etc these days that have proper wetrooms, they can even supply a shower chair, you will need to research carefully and check exactly what they mean by accessible in that partic hotel, but you may be pleasantly surprised.

I hope at least some of this is helpful, I promise you will learn to cope better, but it does seem harder when you were told to expect your condition to be stable.
regards, Deb

 





auntieCtheM

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Re: help please - very long post with triggers
« Reply #11 on: 17 Jan 2012 12:15AM »
Just a little thing to think about - you had to spend the day in bed.  I did the same today, got up and dressed, totally exhausted by the process, so fell on bed and woke up 7 hours later.

So how would you make your bedroom more comfortable and useable if you have to spend more 'duvet' days?  Things like bedside light, TV with remote, teasmaid, little fridge for milk and something to nibble at, overbed table, all things within arms reach.


purplecat

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Re: help please - very long post with triggers
« Reply #12 on: 17 Jan 2012 12:32PM »
I am waiting now for 2 phone calls, one from care agency to discuss evening visit, and GP to ask her to refer me to OT Dept, must also ask for script for more meds.

Have decided to stay in bed again, think it is certainly the safest (and warmest) thing to do - OH made me porrige, he seems better this morning, not nearly as grumpy >biggrin<

I have got things where I can reach them now - bedside lamp is always on his side (where plug is) but during the day he puts it on the floor as Pumpkin cat has a habit of knocking it off, and we cannot afford to keep replacing bulbs when this happens  >whistle< that was why I couldn't reach it yesterday, same with the tv remote.  I always have bottled water within reach, its better than having a glass or beaker that can be spilt.

Had a nice chat with my Dad on phone this morning - he had lent me the money to have my chair repaired.  I must get it insured - it annoys me as every other insurance, car, house, contents, pet, even health insurance can be paid monthly - but anything to do with disability we are expected to pay it all at once - because of course we have this unlimited amount of extra money, DLA - that has to cover absolutely everything  >devil<

Thank you to everyone who posted on this thread yesterday - it really helped to know there were people out there that cared, and the lady at Social Services who was really supportive and sad that she couldn't do more for me, it is up to the GP now


Yvette

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Re: help please - very long post with triggers
« Reply #13 on: 18 Jan 2012 10:32AM »
Purplecat, I really hope you GP can help.   >hugs<

purplecat

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Re: help please - very long post with triggers
« Reply #14 on: 18 Jan 2012 01:32PM »
UPDATE:  My GP phoned yesterday and will make the referral, to OT,  care agency agreed to an evening visit, and a new assesment.  Chemist delivered painkillers this morning, and they are kicking in at last.  It is so impossible to not use an arm, when you can't use your legs, even sitting up in bed is difficult  >erm<

Feel like such a lazy blob sitting here - used to doing things - mind it is cold, so am not missing going out.  Just done a Tesco online shop,  evidently it is Chinese New Year, so have ordered some ready made chinese meals as a treat - normally I would make my own from fresh - but don't think I would be up to all the chopping and slicing :-( this way OH can just pop them into the oven.