Back to top

Positive thinking? Feeling negative.

23 posts / 0 new
Last post
Jackson
Positive thinking? Feeling negative.

This is fairly negative so it may be best left unread but it's how I feel; nobody, however, wants to hear it  and this is the only place I can think of to say it so I'll just apologise in advance.

I hate having Parkinson’s. I resent it, I am fearful of it and I can find no degree of real acceptance whatsoever. I hate the impact it is having on my friendships, my job, my choices my present and my future. I deeply resent being advised to think positively as though it is a switch that can just be flicked on that will make everything better.

I  put my best game face on and go through the motions to make other people happy but in reality, I do mind that I'm no longer able to do things such as going on walking or cycling holidays with friends. And I do mind when people walk on without me and arrange to meet me later because I’m slow. I want them to slow down and wait.

I hate other people’s reactions to this condition. When I'm out, I see others  avoiding PWP and I hear the comments that they make and I realise how very, very far away from understanding, awareness and public acceptance of this condition we are.

I can’t contemplate the future and I find nothing much to celebrate in the present.

Nobody wants to hear this. Friends read PUK's website and tell me that I just need to eat better or do a bit of Tai Chi and socialise with others ‘like me’ (then nobody will have to wait for me or be embarrassed by my shaking) oh, and if I could also just think positively, it'll all be fine. My life with PD is only challenging, apparently, because I'm not doing the right things and I don't have the right mind-set.

I know that nobody can sort this out for me, but right now it doesn't feel fine and I want to be allowed to say so without being judged or excluded because I have the wrong attitude and I might infect others with my negativity.

I know that I'll regret posting this in the daylight,  but it's stupid o' clock right now and I seem to have less resolve in the early hours so I'll just apologise again in advance. :-S

babesbrown

Jackson....Oh how we can relate to how you feel..

My Husband is the one with PD, diagnoised 1 year ago today...

He shakes very badly and his mouth has started to droop to one side..  People stare but dont actually say anything. Hes a lot slower and gets  tired a lot more. He actually told his work colleagues the other day as the company are talking about changes they want to implement,which my Husband will not be able to work with. His HR already know as do DVLA that he has PD but HR have never mentioned anything to him in the year since he told them,not asked how he is and does he need any changes made etc.....we saw his PD nurse last November and have not seen or heard from her since despite leaving messages on her phone....total fail we feel...

The future worries me to death, I personally hate this PD and how its affecting both of us and our Familes....

PD is always "the elephant in the room" and the ones that do mention it always know someone who has suffered dreadfully but are happy to let us know the gory details! Like we haven't already searched the internet for everything about PD.....

I hate everything about PD with a vengance....people tell my husband that medication is fantastic these days? Hes on the "gold star" Sinemet but when I researched there has been no new drugs for 50 years.....just keep adding more drugs together so you end up taking loads a day...what a life to look forward to? People have no idea what PD is really like unless they suffer themselves...

I wonder where we will be in 5 years time. Wheres all this help,wheres the new drugs,where does all the money go which people donate? At this moment in time we both feel totally p****d off with everything...

Jackson we all feel negative at times we are only human...so I am sending you a virtual hug....xxx

 

TeeHee

Jackson and Babesbrown,

 

I loved your posts as it needs to be said its a horrible illness, the main issue for me is there is no  empathy out there!  I  have had people tell me my tremor is  psychological and that I can stop it (psysiotherapist) would you believe.

Hells bells someone else asked me why I was able to stay in my house when I didnt work anymore? Cos I paid the mortgage off by hard graft working long hours etc etc but now I am a leech on society?..  rant rant.

 

Why dont we see people in advanced stages on tv the cancer ads for funds tell it how it is.  why dont we ? no  wonder we dont  get much cash .?.

 

That said my friends trying to be as healthy as you can is only going to help, being positive is hard but this can help too.  But of course we are all human  and that means we have our downs and wonder if its worth getting out of bed in the morning that is fine and if you didnt scream out now and again you would be a cold hard android rather than a warm human being...

I know who I want to spend time with and it aint made of metal, so shout rant cry and have a duvet day.

I too am sending you both a cyber hug xx

Jackson

Hi, thank you both so much for your replies, you make sense and your replies  help. Sounds like you're in a rotten position regarding medical backup Babesbrown, I have to say I see a wonderful PD nurse and dread losing her support so I really feel for you not being able to access good medical advice. And then there's work :-S.    I'm off today so have decided cake is the answer - it's working as immediate gratification - I don't have much hope for its long term prospects but I'm working on living in the moment so :-) Thank you again both. Take care. J x

DivineR

Hi Jackson, I'm one of those ones who bleats on about positivity. It works a large % of the time. But I agree100% with your post and I understand you when in the middle of the night when you feel most lonely. We are alone in this fight and if you can't rant on here where can you? 

You'll get back up and when you do you'll be stronger. Take care. 

Supa

Hi everyone

I have always had a positive outlook on life but recently this has changed completely and I now feel incredibly negative.

I can't bear the way this disease affects me and everybody around me. I'm falling over every few days and my partner is becoming increasingly stressed, wondering when I'll next crash to the ground. This always happens at home because I don't go anywhere else unless I'm in my wheelchair as I freeze constantly. Two weeks ago when I fell I fractured my wrist, now have plaster cast on it for four more weeks. This affects my balance so my walking is even worse.

Sorry about this. Don't know if it helps to unload or not. I shall stop now. The future looks so black.

S

Moderation

Hi Supa,

I'm really sorry to read that you have been falling more frequently lately and this is affecting your outlook on life and the future. Have you considered talking to your specialist or Parkinson's nurse about your medication in case it can be tweaked to tackle this increase in the frequency of your falls? Please have a look at the suggestions on the section on our website dedicated to falls, just in case you find something that might help: https://www.parkinsons.org.uk/information-and-support/falls-and-dizziness

Best wishes and please keep us posted,

Mara
(Moderation team)

 

TeeHee

 I do think its good to unload Supa, its tough going and with a fractured wrist you are probably doing better than you think.  Wishing you well, xxxx

Jackson

Oh dear, i have either posted a ridiculously long reply twice or deleted it all (twice) so i will stop at saying that your post illustrates what a totally sh#tty condition / illness this is and i can see that a plaster cast on top could feel like a challenge too far. I truly hope some brighter days are round the corner but i also think that bottling up all our fears and negative feelings causes real harm. What we do with them once we have expressed them, of course,  i am unsure :-( I'm giving counselling a go - I'm self funding so i can only do it while I'm in work but maybe it'll help. 

With all my thoughts   .. J x x 

Twinks

Hi Jackson, yes, we all try to be so positive when really we want to shout and swear at having this crap disease. No-one understands what it's like and it's difficult to explain to other 'fit' people. But there are so many folk suffering and battling with much worse, or life threatening conditions, than ours. I have found that having friends with PD helps. Before I moved house, I had 2 such friends and we'd go out for lunch or afternoon tea, or walks (slowly!), or just go to one another's house for a chat and compare notes and have a laugh. Since I've moved, I've made friends with a few people on here and we met up a while ago, in Hexham and had a lot of fun. TeeHee, (on this forum), lives quite close to me and we plan to go shopping, when she's dyed her hair back to blonde, started her diet and gets her walking sorted!! (She won't mind me writing that, as she has a GSH)! The thing to try and do, is to not let it control your life.....you have to be determined that YOU will control IT. Shout, scream, swear, rant, rave and bully it into the background.

All the best,   Twinks.

TeeHee

Twinky toes, 

I am almost back in action trouble with me is I sometimes tell porky pies, fact is have started to get quite severe sharp pains like an electric shock, got prescribed gabapentin as naproxin not helping.  Struggling to walk to far and well, trying to be positive and laugh it off.  I have fallen upstairs twice now and wonder why I dont fall down ? 

Anyway I have not forgotton my new friend and once got pain undercontrol will be back in action.

 

Thats me being human, not making a joke of it and having a good bleat, yep feel better already.

Love to you all, rant and rave its good now and again.

Pages