So we have PD, and so what. 1000's ney 10's of 1000's. hell just about everyone is touched with illness, whether its PD, Cancer, MS, Heart Conditions, trauma, major or minor it is not unique. So illness is nothing special. We don't need special attention we just need treatment, options, to know all that can be done is being done and a professional care team, that do care. What is special however is how we deal with it and the impact on our lives. These are a few of my own kinda rules for myself
1. Don't whine and moan. If there is a specific issue then deal with it properly
2. Never think 'why me', its irrelevant it is you and you can't change it
3. Don't look to others for answers, find your own, seek support and encouragement
4. Don't blame every little thing on PD, its not a reason nor an excuse
5. Don't become illness obsessed, it isn't your new job
6. Keep as active and involved as possible
7. Share all the insight and positives learnings
8. Make sure your life is the one you want
9. Most times a situation is just 'life' and affects everyone to some degree
10. Be the best you can be everyday, don't let even one slide
I can't say U achieve all of that, but I sure as hell try my hardest.
We are not chronically ill we are chronically well living with a degenerative condition. So lets be special and rise up, meet it head on and be proud of all we do. You don't need to carry a torch to shine.
I don't mean to sound negitive but come on....how can anyone who has a degenerative illness do number 8 of your list? Make sure your life is the one you want.
This illness keeps so many from doing the things they want to do!!! If they could do the things they want to THEN they could live the life they want.
Being positive is a wonderful vertue!! Not everyone has the ability to do that though. I think people who ARE positive try so hard to change those who are not because they can't understand it. I was like that!!! I could not see why my husband could not change his attitude. I tryed and tryed to get him to see my view of things. It only made me sad and fustrated!!! I finally understood by talking to him and asking him why he felt negative always. He explained how his life was always hard and I realsised the things he dealt wiith were not always the norm. He has been through soooo much in his life!! It is a wonder NOW to me after learning all this and reallllllly listening to what he has been through that he can be positive at all!!!! i admire him even more now and understand his inability to be a positive thinker when a new situation arrises or just the same old ones happen again and again!!!
Let's give all the PD suffers a little slack and give them the benift of the doubt that they ALL are dealing with this monster the best way they CAN!!!
Never in my life has being positive been about changing people. No you have to change yourself always and may not want to, that is all our individual choices. Nor did I say I achieved the list, it is merely my way to try and deal with it the best way I CAN. This blog is about sharing and not about preaching or being arrogant, and I am not suggesting you think that. But I continue to strive to have the life I want within the constraints around me health being just one of them. I never want to say 'I wish I had' or "why didn't I' when I have the ability too. Yes I have given a lot up, but I have filled the gap like so many with other things.
You don't need to give me any slack, I am who I am. Good days, bad days... just like anyone else.
I agree with that......Some days are better than others, but that's OK because life is not perfect.....nor will it ever be. We just have to "make the best of it" ......"We fall down, we get up"..(no pun intended), just like every person on earth.....Everyone has his or her own "trials"...that's why we're here for one another!
That only thing you have any control over is yourself. The idea you can change how someone else thinks or acts is hogwash ••••• smoke and mirrors . The only true control we have is our ability to react to any given situation. Our reaction is our sole decision.........
Well put,I completley,with every one of your comments.I conform to most,because that is how I choose to live my life,,Achievable not perhaps all points ,but for me they represent some sort of direction every day.Not for everyone I am aware of that,but those that can and do succeed in this adaptive way,for me and them,its a citizenship of wellness with illness
I did not take what you said as being arrogant at all!!!! I just want to give you the other side of the coin. People ARE all different and in my opionion I think your words are great for people like you and the others that have agreed with you, that are positive people. And in my opinion your words to people who are NOT positive people may take offense or be saddened to read your words. I wanted you to hear and see that they try and want to be positive too but CANT.
That is what I am saying. My husband feels the same as I do about your post. Like I said he is not a postivie person. Of course he knows life is not perfect nor will it ever be and as I said he does make the best of this situation we are in!! I am proud of how hard he tries to do this!!
I hope you did not read that I think you need any slack given to you!! I did not!! Why would you?? You are a postivtive person!! I am talking only of the people who are not as positive as you. Like my husband. I think you did not really read my post and understand what I was saying.
I know we are all here to encourage each other and that is what I am talking about when I say cut those a little slack who are not positive! Some folks have deeper emotions than others and it may take them a little longer to get through a hard time and illness. Your post was a great pep talk to those who are in that frame of mind but not everyone can be at the time they are reading it. You don't know how it is going to come across to those. Especially when you say, "don't become illness obsessed,It's not your new job." and "don't blame every little thing on PD, it's not a reason or excuse" and never think, why me. Come on.....who never thinks that in a really bad situation!! LOL!
In your last paragraph you also included everyone so that is why I say not everyone can have your attitude. You were encouraging others to meet it head on and shine and be special and rise up.......
If you don't like my response, I did not mean to insult you at all!!! We do have the option to reply and that is all I did. I gave you my thoughts on your post/blog. They are your feelings and your way of dealing with this monster and I comend you for finding your way!!! I probably would not have said a thing if you had not tried to get others to do what you do because it works for you. Or should I say suggested to others to do what you do!!! LOL!!!
I very very specifically said I did not think you thought it was arrogance. I would be deeply saddened to learn of anyone negative or not taking offence to my post or indeed my attitude. I certainly do not think it was a pep talk, words of encouragement, a view point, my feelings .... Isnt this the right place for them? As indeed does your opinion and thoughts. I too could perhaps feel hurt and upset that my well intended words cause such a reaction. With PD it is easy to feel emotional, be self critical, loose confidence and question your own judgement. I walk the fine line and try hard not to fall into that abyss. I re read my post and thought if people can't see it was just from the heart then I am completely at a loss. I continue to respect your views and understand what you say. I haven't posted on this site for a while I have been on my honeymoon. Holding hands and skipping ( well kinda) I'm good at alongside smiling and being happy. I'll stick to that.:)))
God Bless you Henderson-Heywood!!! I am happy for your recent marrage and wish you nothing but love, and happiness!!! I hope you do stick to smiling and holding hands and skipping!!! That is a wonderful way to take life!!!
Yes as you were giving your opinion I was doing the same. I think I am the one who is wrong about thinking this was also the place to make comments if I do not agree. It reminds me of the saying, If you don't have something nice to say then don't say anything at all. I seem to have a few people who don't agree with me and seem upset with my post!!! My understanding of what they posted is that I am looking at positive people as putting themselves on a pedestal and being self rightious.That is not at all what I was thinking and saying. I think you are sooooo right about PD causing people to be emotional, self critical and loose confidence and question their own judgement. My comments to your post/blog has caused that to a few people as you can see.
Anyway, I will say no more about your blog/post. I don't want to be the cause of any one being upset or hurt. Everyone is dealing with enough as it is.
You can disagree and dislike and say so anytime, said in the right way, which you have, as we all can and should. You can come skip with me anyday, or bang drums I do both a lot x
I think i understand what your saying and your angry with your situation and PD your husbands illness.,I have read your posts and respect your opinion,you represent your husband also and he has the same views.you particularly point to no 8 in the list,"Make sure your life is the one you want" and your right I didnt choose to have PD and I didnt choose all the crap that decended into my life at the same time as I recieved my diagnosis ,I have this illness ,whats written is just an opinion make sure your life is the one you want,you dont choose to puke or pee yourself.But that doesnt stop me being positive,i look for things to be positive about,its not about being virtuous or putting yourelf on a pedestal,its bloody hard work and not achieved by arrogance and anger well whose to blame no one so whats the point.Take care i wish you well its an ardous journey for us all which ever camp were in
Gezzzzz!!! I don't understand where you get that I'm angry Balderdash!! I am not angry. I don't look for anyone to blame for my huband's illness!!
You don't understand at all what I'm saying..... I am happy for all of you that are positve!!!! Very Very Very happy!!!! I wish everyone could be positive!!!!! I was just giving my opinion about non postive people!!!
maybe it is my exclamation points that make you think I'm angry. Heehee!! I will not use them anymore. LOL!! But seriously, I did not intend to offend anyone or give the impression that I think anyone is putting themselves on a pedesal or being virtuous. I know everyone is doing the best they can to get through all their problems, illnesses, etc. I include myself. I am not an arrogant person nor an angry person and did not intend to come across as that. I just wanted to express my dislike for some of Henderson-Heywood's post/blog comments.
I think I got the wrong idea about the freedom of expressing my opinion on blogs/posts. LOL!! May God bless you and everyone else on this website, positive people and negative people!!
We don't get what we deserve, we just get what we get, and it is up to us to make every effort to manage this unfortunate impediment, (which PD is to me), and live our lives with purpose and poise. Whining and moaning is a waste of energy and time. I know that, now! There are worse illnesses out there, and some of us are more advanced in the progression of this thing, I know..it is not easy, but one must keep moving forward, taking care of ourselves and accepting of our limitations.
One thing though I would like to add: I live alone and sometimes my illness is my only companion which can add to some unnecessary preoccupation with the negative side of things. If I had a romantic partner, for instance, and other amenities, it would probably make this situation with PD a little more bearable for me. As like yourself, I, too, would truly feel like skipping!
Me too Janellen. Have to remind myself my job now is to take care of myself. If I can do one extra thing, like go to a meeting or a class, it's good. Two extra things might work and I try but the next day is shot. My sponsor says "Keep the focus on yourself." Hard to do.
henderson-heywood, I agreed with almost everything you said, until I got to being chronically well. Though I can't disagree with this for myself or for many, I do think there is a point at which illnesses can tip into being the opposite. We are fortunate that for most of us this process is slow, and to make the best of our lives is where it is at, and having a good attitude to PD, but it is right to remember that there can come a time when this is not the case.
Inspirational post, loved it, but have to be aware that some have travelled past this point into a different place of learning to live with PD. I guess there are stages on this road....... Long may people stay in the one that you describe.
Oh I am under no illusions here at all. I call them windows the one open to me now will shut and a new one opens and everythig is different. Each time it will get tougher.I have been preparing for it in a very unusual way. I also am doing things today which will help me not mourn the loss of me piece by piece so badly. Amongst other things! I also heard something on radio 4 today that is really interesting I will blog it. But thank you
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