Here we go again


#1
Here we go again.....cant be bothered, cant arsed cantreally be fussed to write this on the forum but you are the only peoplw I am truly honest with. I dont come on very often and I say that everytime ..lol not going to now. So what is it come on to winge come on to get sympathy come on to make yourself feel better yeah I can hear all of them....but no I havent like I said this is a forum but at the end of the day you dont know me I dont know you we all have something in common and its that thing that makes me feel comforatble knowing that you all know exactley how I feel.....maybe.
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

#2
I'd like to tell you what I did today.

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?

#3
My word you 2 know how I feel,I feel crap most days,ive been off work for past 7 monthes waiting on doctors it's driving me nuts,there's no love from the wife anymore no hugging no touching no nothing for the past 14 monthes,but I know my son's love me and I try to be a good dad to them but most days I just can't be bothered or p d doesn't let me its so crap, and all my family live in England & I live in n i so they're out of the picture,so u know what we 3 should meet up and go on a holiday together and get totally wasted and have a few laughs,thanks for listening and always remember tomorrow could be better for us kev :---))))

#4
hi all,

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.

#5
Hi There ,I sometimes feel I dont feel like coming to the website,as Iam always
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.

#6
I have had parkinsons for 8 years and have been positive in my outlook,but just recently i have felt being positive is the hardest thing i have had to do.When my medication wears off and before my next dose i feel that i want to go away and hide as i can't bare the awfullness of parkinsons and what it will do to me in the future.
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....

#7
I am just so TIRED can`t get out much as I have P.D.- C.O.P.D. & C.F.C. my neurologist says madapar is controlling P.D. well and that the shaking bad sleeping stiffness ect is caused by inhalers my GP does not agree but says see what your like in summer ?? Family are good but don` really understand and get nearly as frustrated as me.Well we`ll see if the sun shines and makes a difference :sunglasses:

#8
Hi all,
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,!!!!!!:disappointed:

#9
wifit sorry to hear that you may possibly have something else wrong life really is hard going for us parky's..as i well know as i have developed skin cancers thathave to be removed every few months, and i have been told that this is rare side effect of levadopa .So i am in a catch 22 situation, can't leave off the levadopa ,but i don't want skin cancer either...so i really don't have a choice.So chin up and hope your tests results are good.................

#10
:smile:Hi Kathryn,
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.

#11
Thank goodness for your posts. You begin to feel you are the only one suffering like this.Today is 'I can't be bothered day', I just don't feel like doing anything. I have tried but after a little exertion have to go and sit down again and rest. How I hate these days,also bursting into tears for no reason, and trying to sound happy and ok to those who call me. They just can't understand how this PD affects us.Just getting this off your chest helps a little, thanks for listening.

#12
Hi angel you are definitely not alone when you have a bad day and burst in to tears,i seem to go along fine for a week or so then wham it hits me just as you say, thank goodness we understand each other..........only us with parkinsons know how we feel...........Best wishes Kathryn.

#13
Hi, Having had pd for longer than I care to remember, I can assure you that we all feel like crap a lot of the time, or maybe if we are lucky , just some of the time.
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

#14
Years ago there was the book - The Power of Positive Thinking.
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.........

#15
Often I go to bed hoping I won't wake up, then feeling disappointent but not surprised when the next morning I do. I shouldn't feel this way because my symptoms are still mild compared to many people here and I know I should be grateful for that. However, I had to take early retirement which has strained my finances and wrecked my retirement plans and I have lost the love of my wife, although we are still good friends. Still, at least I do get a private pension on which I can survive, just not with any luxury. You see, I have this constant conflict of feelings, alternating from feeling sorry for myself to thinking I should count my blessings. I think the worst of it is that I feel my life no longer has any purpose and I'm just marking time. There I go again, I shouldn't feel this way but it's hard to control your feelings.

#16
Just reading through these posts again has brought tears to my eyes, (pull yourself together I'm telling myself).I am so lucky in so many ways, and I think we think of ourselves as being weak, but we can't help it. It is this nasty PD that does this to us. I am stretching out my arms far and wide to you all ,wherever you are,and lets have a great big group hug. Maybe we should start a hug group, so whenever we feel down we can log in and get a hug.:cry::disappointed::smile::astonished::wink::laughing:

#17

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 neutral 


#18

Hi everyone

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


#19

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.....


#20

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