ouch!

I recently got slaughtered for a 'happy' post on a PWP support page. I know I can come across as a bit 'know it all' and 'my way is best way' you guys are tolerant of that and take the trouble to know I am genuine and like us all doing my bit as best I can. What came over is, apparently, that like some Public School Headmistress I scold people for being miserable, as if we are not allowed to wallow or give in. This is of course personal choice and I would never ever preach to people who don't need telling, they need support. Then I thought on it, and thought on it some more.

How many posts are happy ones, where someone is coping not too badly, where there is some joy and a smile. Well not many, and YES I accept that these places are an emotional dumping ground and the right place to whine. If you want to say its unfair, you hate your life, PD has ruined you, stripped you of your life, destroyed your marriage, alienated your friends and killed your dreams - well go ahead…..

and this is where I struggle…. and where I get kicked… because actually I don't concur.

My parents brought me up to be the best I can be, and I try to be better. That means that the paragraph above to me is not acceptable. I take responsibility for my own health and happiness and you know what it works. Whatever people think I remain in exceptional health, my consultant finds it 'unexplainable'.

So I make no apologies for being happy, cheerful and loving my life. I make no apologies for saying c'mon guys lets give it our best shot here, don't have a glass half full have one brimming over. I'm just trying to shine a little light in the dark. Is that such a crime, even if it sounds a bit bossy! Actually bring on the bossy as some people need a kick up the arse. And I close on my view 'being ill is not special, the way you handle it is' ….

Kindest

ever

CHH

20 Replies

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  • I agree with the sentence "it's the way you handle it" I choose to be upbeat, chirpy, I don't mention my illness to anyone unless they ask and then I keep upbeat about it. I don't want to burden it onto anyone. It's not their illness I own it and I look after it. If I feel I'm slipping i know I can come onto this site and be amongst fellow sufferers and maybe have a moan and I always leave it feeling on top again. Thanks everyone x

  • jhi COLEEEN]

    i find your posts v upbeat )(pardon the pun with the drums) and i do not want you to write anything othe than what u feel

    lol JIll

    j just lost tmy reply to you somewhere so shall leave it at that and find yor post on this new website

    i tend to tell people what my problem is and they are usually ok with it ( PWP / PSP/CBD or whatever)

    :-)

  • Isn't it just so annoying when that happens. I have found that sometimes when I have lost one of my posts what has happened is that I have somehow clicked upon another tab and gone onto a different page that is also a page from Health\Unlocked. To recover the lost reply post i is just a matter of clicking the correct tab and scrolling around until you find it

  • I agree. Humour is a great healer. It won't cure the problem but may help. I'm in this group because of friends, but I have 4 other groups on HU I am qualified for through having the condition.

    I find the information is usually helpful, but as we're in the same boat, surely we're friends and can share the good stuff too? And the odd joke. There are some really ill people out here who enjoy such activity as they can and for some social websites are about the limit. Some of the liveliest people on site are housebound.

    So YES, let's brighten up and get on with what we can, not moan about what we can't. That in itself reduces available energy and when there's little enough anyway that seems potty.

  • I agree. Humour is a great healer. It won't cure the problem but may help. I'm in this group because of friends, but I have 4 other groups on HU I am qualified for through having the condition.

    I find the information is usually helpful, but as we're in the same boat, surely we're friends and can share the good stuff too? And the odd joke. There are some really ill people out here who enjoy such activity as they can and for some social websites are about the limit. Some of the liveliest people on site are housebound.

    So YES, let's brighten up and get on with what we can, not moan about what we can't. That in itself reduces available energy and when there's little enough anyway that seems potty.

  • I always enjoy your posts and they are very up lifting. Keep them coming. I hope that I can stay as positive as you have. Thanks for all of your words of wisdom. :)

  • Do what you feel in your heart to be right, for you'll be criticized anyway. You'll be damned if you do and damned if you don't.--Eleanor Roosevelt

  • Spot on as usual - just do it !

  • Good for you. I agree there are worse things that we could have then Parkinson;s. I am still leding a very full life. I refuse to give in to it.

  • Mercy as if we Parkies don't have enough to think about, Add to the list being to happy??? I think the others need to get a life, I like being happy, there is nothing to be scolded for. Keep being you because they will keep being them. Have a great "Happy" Day LOL !

  • people have a right to whinge, but I can only take so much. When I'm around negative people, that aren't seeking answers, I feel like departing and I do. I'm here for you when you want to cheer up and get on with it. HH my mom raised me to be passive and helpless, but I'm a rebel :D

  • Coleen, too many people dwell on their lot in life, and waste what life they have doing it.

  • Hey Henderson-Heywood - I ABSOLUTELY agree with you. Life is what you make of it whatever challenges we face.

    We must, however, face them rather than give up and die. I am very much into exercise and have written a paper called R.I.P.E. which is about Realistic Improvement in Parkinson's through Exercise. it is my mission to get every PwP exercising to their hardest - why? because I have proven to myself that intense exercise (with medication of course) can hold off the progress of "The Beast". It gets harder all the time but I'm still winning after 11 years diagnosed and recently took up Boxing Training which is proving very beneficial

    I feel sorry for those PwP who have given up fighting the condition - it is such a waste - but I will continue to nag on about exercise

    By the by, I'm having my 70th birthday lunch at the Carfraemill Hotel which if I remember is in your neck of the woods?

    Kind regards

  • let's face it, with PD bad things happen. We have the right to be negative--at times. I refuse to put on a false face, ever. Happy talk can get insipid and posts can get sentimental. I have to 'get real' and stay there. It's how I cope, by facing the reality.

  • Hi Coleen. I have known you, through your posts, for quite a while and can honestly say that I find your posts interesting and upbeat. I always say I may have Parkinsons, but hopefully Parkinsons will never have me!! We all react differently to our diagnosis, but we are all different. Some of us fight. others don't. Whatever way we choose, it is our choice. Please continue with your posts. I do not post very often, but this does not mean I do not read them. Keep up the good work. I know you have many 'old' friends who appreciate your words.

    Sue

  • I would rather fight pd with a good attitude, exercise and diet than a multitude of medications that ultimately add to the negative symptoms. And you are right, there are many more serious diseases out there than what we have! Dont give in- FIGHT!

  • Hi Henderson. I am with you all the way. I also feel down occasionally, but it fortunately never lasts very long. So what if people don't believe I have Pd! So what if I don't look 79! So what if I am the only person in our retirement village who walks hard every second day! I am not trying to impress anybody, nor am I trying to make others feel bad because they can't be bothered to exercise. I am me! Although I have Pd and a whole lot of other things wrong with me, I enjoy my life and I am able to travel and see how the rest of the world lives. I am able to talk to other Pd patients, who also don't think I have Pd, but that is their choice. The only person who can help me to stay healthy is ME!

    Enjoy your day.

    John

  • Well said - couldn't agree more

    You have to make the most of what you can do and work out ways to keep doing what you've enjoyed in the past - being 'up for it' or 'Happy' is almost criminal for some. Many People who see don't believe I have PD - until I sometimes drop my guard and do the funny walk or ask a bar person not to fill a pint glass to the brim but leave the last Inch in the pump until I've reduced the contents of my glass somewhat.

    A lot of the time I take the mickey out of myself. Yes there are days when I feel so dire I can't be bothered we all have them - and it takes some significant reserve to kick yourself out of it - but if you can you have to do it. The ones who annoy me most are the 'Don't you think you should stop and take it easy or sit quiet. My reply "If sitting counting "Flowers on the wall paper' is all you think I should be doing then phone the Vet and tell him to bring his bloody gun - I'm ready for the knackers waggon" - its even worse - we don't have any flowers on our wall paper !!

    Kick Ass!! - preferably a Doctor's

  • Let me put it this way, your upbeat (cheerful) attitude towards a bunch of dour PD patients is kinda like going into a Jewish establishment and starting to tell holocaust jokes. Many PD patients have a dour/sour disposition and the personality trait is called a 'premorbid personality':

    ncbi.nlm.nih.gov/pmc/articl...

    Also, Parkinson's is an anahedonic condition - a condition without pleasure. And the reactions of the aforementioned PD patients to your cheerfulness does not surprise me.

    neuro.psychiatryonline.org/...

    So hang in there and keep putting your foot (or two) forward.

  • Hi Henderson,

    Welcome to my world !!

    I have just started up a facebook page called Parkinson's People (blue tulip as it's logo).

    I post things all over the facebook forums.

    One post causes offence on one site but the same post causes no offence on another.

    One post was actually removed from one site but reinstated by demand by the users of that page !

    I find certain posts get shared by many, but are not out of the ordinary.

    Other posts I think will be useful no-one shares or comments.

    Some posts no-one comments.

    This just shows you how people are :- you try to help so do not worry. If there is no malice behind it, do not take it to heart !

    My posts come from all over the world to give people ideas and contacts.

    Cheer up

    Andy :- Parkinson's people.

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