You are the only people I am truly honest with why?????I dont know i really dont know have a loving partner a great family lovely kids and grandchildren I jus cant deal with them any of them now i cant see for tears oh this has been a long time coming. Do you ever feel like you want to run away and hide, feel sick, not motivated not bothered i cant even begin to think about tonights dinner i could walk the dog nope i coyld go in the garden nope oh jesus why do I feel so messed up I want to work I dont want to work, I can work I simply cant because im too tired my symptoms seem worse to me i am struggling but tomorrow this evening i might be ok, im worried about money im worried about how the neck we will survive if i dont work i just do not know what to do.
Please Im not asking for you to solve my problems i just wanted to put it down somewhere to get it out my head. Thank you guys x
My PD Nurse called on the phone. She was very sweet and asked me if she could do anything for me. I have been in a grump recently and I was a little short with her, but polite enough. Now I am worried that she's got me down as a miserable old sod who doesn't want some help, and thinks I'm rude.
The point is, being unhappy is not a thing you can control. You make efforts to be cheery but you get tired of doing so. I'm so tired , all the time, that I can't function properly. My lovely wife is supportive but I know I'm being a pain to live with.
But I am miserable at the moment.
I also know that in a week I'll be thinking differently.
I TRY to give myself a little break sometimes. Maybe you can give ourself one to?
i have been feeling the same way recently keep getting this churning feeling in my stomach as though something bad is going to happen and i feel frustrated cant sit still dont know what to do with myself i feel like i want to scream the days seem never ending, well thats got that off my chest i wish i felt better after that but i still feel the same oh well it wont be long till bed time the only release.sue.
looking for news of a new treatment or maybe even a breakthrough.There
are lots of news of things happening to mice but when I speak to my
Parky nurse or consultant they look bewidered and say,NOT TO WORRY
would you believe. The latest is a breakthrough on drug delivery
to the brain by a London university,am I excited,you guessed right.
As you say were all in the same boat,BLESS you All.
Then common sense kicks in i have a lovely husband children and grandchildren and a dog..all give me love and attention.......so please hang in there.no one knows what will happen in the future....Goodbless....
I have had PD now for over 3 years. I am 59 and always looked after myself. Plenty of fresh air and exercise and watching the weight does not creep up too much. Now since I have had the disease my weight has gone up up up !!!! They say due to medication, my ankles swell ,again I am told due to medication.and I like to exercise but sometimes it is hard due to breathlessness and again this is due to medication. So in my heart of heart there is nothing I can do about it because I need the meds. So that I can have some sort of "NORMAL " life. Some time back I decided to stop feeling sorry for myself and enjoy my life while I still can. This has been good for me until now when I feel like I have just been hit by. Brick wall. I am waiting to see a breast surgeon next week as I have a lump which is suspicious . I have had it tested and I go on Thursday for the results.Now can someone please tell me how do I try and get on with my life and try not to worry about this lump. This is what my husband and family keep telling me. As if coping with the day to day trials that PD hands out to you I now have this big BLACK CLOUD hanging over me.Life can be cruel. I don't know how I will cope if I am told that it is the dreaded "C" word,!!!!!!
Thanks for your reply.i feel a bit selfish wallowing in my own self pity when there are other people in a similar situation to me.i think that it does you good to write down how you feel at times.so I have given myself a good talking to and I have to think positive because if I don't I will never get through this spell in my life and I need to as I have an extremely loving husband and grown up son who I adore very very much . So this is my wake up call, my kick up the backside that I needed. Thank you for your kind words Kathryn.
Parkinsons is a degenerative brain condition ,so, naturally, it is going to affect the way we think, our emotions, our moods. anything. Some mornings i just wish the day was not going to start , other days ,everything is fine. Even the medication we take can affect your feelings., moods .the way we think, everything. But some times I am certain you will feel happy.
I am sorry if I haven't been much help, I can only say how I feel.I just hope this will help.
Love Blue Angel x
Then came the suggestion that we try to live in each day and not ret or fear tomorrow.
`now - what is beginning to help me is reading about Mindfulness Meditation and practising this simple form of meditation trying to just live in this present moment.
Yesterday is history and tomorrow is not here yet, all we have is now.........
Well summer has been and gone (and it has been a good one ) I managed some time sat on the beach people watching my latest hobby) BUT still continuously sleepy tired have had some med changes so hopefully I might improve I do try to keep cheery as no one wants to listen to moaning they start to avoid you but I have stopped going to PD meeting as the other members with PD just sit while their partners talk about the problems they are having the PD seem to sit quiet like naughty children hey we all like to moan IT DOES MAKE YOU FEEL BETTER
Today is a very different day to the one that started this thread; yes I have had days like that one since then and I am sure there will be more almost cried when I read it back.
Do you not find that when you are feeling good you realise just how crap you had been.
My first ever Pilates exercise group tonight and I now know why it is going to be so good for me I would recommend it to any one who was considering it
Tomorrow is another day, not a work day have my year old grand daughter for the afternoon, such a little person brings so much joy and we are off to Suffolk for 4 days next week to stay in what looks like a lovely barn with free bikes for the time we are there I for see an injury occurring (well it did last time) and an oppurtunity to do nothing but visit Aldeburgh and Southwold.
I suppose the purpose of my post is to say that from my first one there is always another day when things and feelings are better. It has actually done me good to read my first one again
Well good night all and here's to a new day x x
Thank you to everyone who has posted in this thread. Blue Angel said most PWP s feel crap most of the time or some of the time if we re lucky. I m relieved to read this as other PWP s I've met plus doctors , nurses, info and support workers seem to think we feel ok once on meds. This hasn t been my experience and , like you all, have my dark moments but try to be positive as much as possible. But I so want to feel better . Am seeing neuro next month , watch this space.....
just been reading about the neupro patches not sticking very well...i have been using the patches for 10 years and found that mepore patches that you can buy over the counter in any chemist (they are surgical dressings used for covering wounds and cuts etc )
put neupro on in the usual way, then cover it up with a mepore dressing 10 x 11 is the size i use...only down side to this is you can only use it once and not advisable to get it wet....and the cost is about £12 - £14 for a box of 40.....you could ask your gp if u can get them on prescription...i personally would'nt be with out them...hope this information is of some good
best wishes kathryn