Hi there,
Maybe it is just those who post on this forum, but I am fast getting the sense of an intelligent, articulate, very sensitive and caring bunch of people, who find themselves, through no fault of their own, in a completely rubbish situation - either dealing with PD themselves, or loving and helping (“caring for”) someone who has it.
Sympathy from others is wholly useless and in fact makes me want to scream - I don’t want people’s pity or throw away lines (“you need to look after yourself you know”) - plus the sense of relief that they are not in the same situation. I want them to help out with my ironing, cleaning, cooking, gardening - anything practical that will take some of the load off my shoulders - and without them needing or expecting something physical or emotional in return. I know that is a lot to ask - and it is difficult to ask because of not wanting to impose, to be indebted, needy or beholden (or is that just my warped psychology?) .
So what is the answer to all the feelings and struggle whilst we still have to get on with it all. Sounding off without fear of judgement or being judged would be nice - which is where people who have been there and got the t-shirt come into their own.
A counsellor recently talked to me about “acceptance” - I could have rammed his bloody acceptance down his throat - but I know he is right - along with all the spiritual masters (and mistresses)and philosophers (esp the Stoics) through the ages who talk about detachment and mindfulness - focusing on the here and now moment - not worrying about the past or future. Certainly for me, railing against my fate (and then feeling very guilty for being such a so called 1st world complainer whose problems pale into insignificance compared with much of the rest of the non Western world) simply takes up the precious resource of my energy - and leaves me no better off . I have to focus on what is in front of me and do that and not have such unreasonable expectations of myself and how I am feeling/behaving etc when things are not going so well. I cannot afford to compare my situation with others - either because they are better off or worse off - both leave me feeling rubbish.
And comparisons ARE odious…but my husband is a lot older than me - so there was always the very real likelihood that I would become his carer - whereas you had every reason to think that you would grow older together in some kind of unison, with a lot of healthy life ahead of you before the ravages of old age set in. You have every right to feel sorry for yourself - it is wholly natural and understandable, though probably doesn’t help you to feel better - I suspect that instead it will lead to you feeling guilty for feeling that way - which is not helpful either!
It is also very understandable and natural to be fearful of the future - how the PD will develop and how as carers we will cope - or not (and what unattractive sides to our characters we might discover in doing so) - what “it” will be like - the thought of being on our own etc etc. It would be unnatural not to be scared of it all and not to want to bury one 's head in sand, work, alcohol or whatever. So we do all those things - then come on the forum or read a book, see a child playing or watch Nina Conti and have a laugh, and feel a little refreshed and energised for going back into the fray.
It’s not fair!! - says the small child in me - who is instantly challenged by the adult me who knows that that “fairness” and " justice" is not the way the world works and never has been (those with a religious faith will argue otherwise - and I envy them too - having once been one of their number ).
It’s okay to say it is not okay and to want some space to just be yourself - not a wife, mother, daughter, employee, whatever. Just accepting that can help, even if it is not possible to get it. And who knows what lies around the corner - a new friend, a word, a picture, a look, a little something that makes us glad to be alive and to have feelings and a brain and the the capacity to love and be loved. Doesn’t help with the big stuff but can help get through the smaller stuff.
I had better stop and get on with some of that stuff!
You cut yourself some slack and keep posting!!
warm regards,
Pippa
