You come here my dear Pat, to those who understand and care for you so much. We can't solve it, perhaps we can't even make it any different at all for you - but at least we can travel alongside you whilst it is all so very hard and you aren't in contact with that wonderful tenacity and courage that I love and admire in you so much.
Sending you my love and hugs to wrap around you, to hopefully shield you from the pain of what you endure day after day.
Those who live with those of us who experience the physical pain suffer too and you, the very strong you who is struggling so much just now is evidence of just how painful it is to be the carer.
I'm feeling impotent, wanting so desperately to make a difference for you - so I guess that's just a taster of your daily life.
Hoping, hoping hoping that you can feel my care for you across the miles.
May you both find the energy to put one foot in front of the other and find a bit of light in a dark corner.
Sometimes girl. In the words of a mate. Looking at our very sick chicks in Helen house.
For some people life has dealt a crap hand.
No comfort at all. But true though.
Hi pat remember the things u would say to me when I was having a bad day that there are people who care about u and want help u if they could, pat I know what it's like to lie there and scream with pain when my meds don't work and I know one will come to help me, when David has the pain he knows that u are their for him to hold him and love him and to keep him safe.
Please take this virtual hug from a complete stranger.
I do not know you so if I'm offering advice on an avenue you've already explored then I apologise. Is there a carers centre you can seek supporte from? I know there's not a lot out there, but our local centre has been a hub of helpfulness for my loved ones. If that's not any good for you, stick with the dog walking & remember there are others online who care
Yes we have a local village branch which covers about 4 local areas. No always easy to get out if David isn't well.
Sometimes, and I know it will never happenm it would be lovely for a bod to come in, sit with him so I go get my hair done. But as I am growing it doesn't count!
Bless you it must be a real challenge every minute of the day . Its hard enough to watch the person you love crumble with out being not able to help and stabalize things . We on here are always to try and help even if its to listen or give advice or suggest helpfull hints . I do hope you get some help and relief . Thinking of you xx
Thanks Donna. Been at it too long and sometimes I need to stand back and have a scream.
This forum has been wonderful over the years and yes we all help each other. Sometimes though being on the other side of pain, and a positive happy person, I need a scream. All finished now
x
Hello Pat
Sorry to hear that things are not getting any better.
You have been through so much and both of you must be feeling the struggle just goes on and on.
Have you discussed with your GP possibly arranging for a period of respite by putting David in a nursing home for a short period of time. Sometimes it can be arranged that the Pain Clinic can refer Him onto a ward to try and calm the pain that he is suffering with and introduce stronger medications. It cannot be a satisfactory situation you find yourself in so you need a more intensive pathway to give you that respite of a few days away so you can breath free for a time
Are you dealing with Social Services, they may be able to step in and give you a chance to walk away for a time to give you a rest There are situations where they can give you a break. So your life can have some normality for a time, even if it is just to do housework or see family members. They may be able to give you help in the home
Oh yes Bob. Dealing with social works such as is left of them. You know how they don't operate even though David is classed as critical and can be a danger to himself.
I'll message you cos something I need to ask.
Meantime I battle on but now with my smile back thanks to some lovely posts and messages here
Sending big hugs P... Bit late wading in here so hope by now you're feeling a bit better and that David has had a bit of rest and things have calmed down.... Crisis is just that: a crisis so if it's possible in the moment to realise that then it must help to know this too will pass. Having had a bit of a melt down recently myself I know that my other half really did well to stand firm in the moment with his solid supporT. This wasn't always the case and he used to fade away so now I feel he's with me I feel so much better. David is blessed to have you but who's there for you ?
You can occasionally close the door when he's safe and take some time for yourself so you can recharge your batteries... Think about yourself Pat. Xxx
Guess this has been building over many months and now with change of meds he sort of hit the deck, As te GP and wonderful consultant were getting his meds sorted I wanted to scream - what about me?? Gp increased my happy pills which wasn't wuite the answer but the easiest option.
Like your other half there has to be a strong one or we all hit the deck.
Yup fine noe just getting ready for arrival of the snow!! Had the storms so snow is next.
Bigs hugs and thank you as always for you support
x
Hi pat if I lived close to u I would be there in a flash to help because u have done so much for me I know that I would not be here if it was not for u and I know that david has the best care and love that anyone can give.
I know is that I send my love and kisses to u both.xxxx
Well I don't know much about her condition but is there a charity somewhere which might understand better?
I never chritise the medical profession who have looked after my husband so well over the last 30 years. What I am saying is how hard it is for those who look after loved ones to get respite, someone who understands and will talk with them.
Have you posted on any of the forums about your granddaughters condition? Doctors and consultants don't know everything es[ecially with rare conditions.
Probsbly a dilly question but what have the pain clinic and consutant suggested? It isn't always about popping pain tablets. It is about pacing herself so as to minimise flair ups and manage the pain. No chronic pain sufferer is ever completely pain free. Sometimes the simpler answers can help.
There is also a 2 week pain management course where you can learn so much. How not to stress which tightens muscles and causes pain to worsen
I am sorry there isn't anything anyone can do to help her.
Lucky to have you fighting her corner. Stress and worry cause muscles to tighten which does add to pain.
I hope she finds something she enjoys doing and the injury allows her. Never say never. I have a very rare hereditory eye condition and have been used as a guines pig to find a cure or prevetative treatment for others. Won't help my blindness but maybe one day it will be something of the past.
Big hug for her - granchildren are very special - warts and all.
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