I am always pretty conscious having been told before 1. You sound like you are preaching 2. Just accept some people want to be miserable 3. You can't be suffering enough….. funny old world isn't it.
I have come to the conclusion that I am not really bothered what the PD community thinks of me or my posts. This is simply because I always write from the heart, what I believe in and with no agenda.
My biggest belief is that we sit on our biggest weapon way too much, and that is ourselves. I have had this condition now for over 10 years and remain so busy and active learning, giving, and having a great life. No one has given me that no one. I made it happen, me. On my own. Now this doesn't make me some super woman or "i'm better than you" this is simply how it is. I am trying to share with you something that works for me in the hope that a little encouragement and positivity can add something.
Within my limitations I push every boundary I can, I try new things, I never sit still, I never say never and I am determined to be the best I can be. Yes my illness bites me all the time, but I bite back, twice as hard, twice as fast.
We are capable of so much, we are not on the scrap heap. My best is yet to come actually, I'm still growing into my skin!
So today, if you feel a little glum, have no motivation. are just plain frustrated then try this…
Play the first single you ever bought really loud….. text 3 people and tell them what you love about them, and take the thing you are best at, whatever it is and go do it…. dancing, drawing, cooking, whatever it is. Finally, selfishly, please take the time to tell me if you did any of these things, I'd love to know.
Well said, Colleen. 'Don't let the b......s grind you down' is the best philosophy, and in this case the 'b......d' is Parkinsons.
As for playing the first single I bought very loud....hm! It was a 78, 2 of them, in fact, one was by the Johnny Dankworth 7 (can't remember the title), the other was "Now's the Time" by Charlie Parker. I can't play them loud, I don't have them any more, so I will make up for it by playing "Money" by Pink Floyd, though I will have to wait until my wife is out of the house, she doesn't like loud music.
To continue that theme, at Xmas, I received a DVD of "The Last Waltz", a film based on the last concert by The Band, featuring Eric Clapton, Muddy Waters, Neil Diamond etc. The opening frame says "This DVD should be played LOUD"!!
The Beetles 'She loves me Yeh Yeh Yeh - with a love like that - I know I should be ?
Your post that said 'Swans swimming on a lake in the mist' made me one mournful morning - made me snap out of my gloom and realise that I needed to open my eyes to the beauty that is around me - my cat - my husband - birds - my children - my childrens childrens and one of my childrens child's child - my artists equipment - colours - books - my large paintings - my small paintings - the sea - feeling loving and loved. The list could be endless - my meditational tapes - music - learning - my big apple mac - poetry -
Anyway - it is your journey to be the way you are - and you are an exceptional lady - full of enterprise and strong. Sometimes I feel a bit jealous of what you accomplish - but I look at that green eyed monster & face him down & kick him? into the bushes. I would like to have your energy, but I haven't - but I deal with it as best I can.
When someone has an exceptional story to tell - which you have - I always would like to hear about 'How do you do it - what do you eat - what work do you do - etc etc etc. Write a book on it - I love books that help me live a fuller life.
1.1st single 'Rock Around the Clock' Bill Haley & the Comets……played loudly in the privacy of my 'snug' along with Buddy Holly, the Beachboys, Abba & Queen. I'm a Don Mclean fan (who isn't?)
2.Skyped or texted 3 people & shared my good feelings
3.Will work my magic with children when I get one on whom to practice.
I wish it was all that good. Re your 1st 3 points:
1.I suppose I sound like I'm preaching because I say what I feel about PD (from the heart) …but also because I don't write the way I speak, it always looks stilted in print.
2.Who wants to be miserable?
3.You can't be suffering enough. To me any suffering is a step too far…however I have no intention of letting it take over.
My glass has always been half full. If I haven't got something constructive to say I don't speak (I'm not known for my reticence!). I try to see the positives in any situation & I'm happy to share my experiences: good & bad. I don't have enough time or energy to waste any on jealousy or negativity: I'm too busy using it to get & stay fit, do my therapies & treatments, take my meds & pursue my various interests. Because I only go out when I'm fit & sufficiently prepared people apart from those closest only see me like that - so I can walk a reasonable distance without falling, I'm smartly dressed wearing make-up with my hair done, able to carry on a conversation etc etc. "You do look well", "We haven't seen you around lately, have you been away?" OR 'obviously you are doing too well to need the support of a group', "I wish I had less (pain, tremor, stiffness, etc ,etc) like you… no wonder you're always so bright."
At the risk of 'banging on' (pardon the pun) wherever possible I push for people to give a thought to trials. I have applied for and/or taken part in 4 so far. They're not all high profile, don't have to include surgical procedures or taking drugs BUT without volunteers there will be little progress. If for no other reason taking part enables me to contribute, to have a little control, over the fate of myself & others with PD. It makes me feel good - who could ask more?
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