A bad day


#1
Sorry, I'm really just having a whinge! All I wanted to do this morning was clean the bathroom but by the time I'd had my shower I could hardly get dressed. I get so frustrated and the family don't seem to notice either the dirty bathroom or my mood.
I know I'm just being selfish and a lot of pwp's out there would love to be able to be able to walk or just shower themselves but not being able to do things you could a few months ago just flags up the progression of the disease.
I'm normally very positive and get on with life as best I can but just now and again it just creeps up on you and bites you on the bum! There, I feel better now I've had my moan or maybe it's just because I've sat down to write this and it's made me take a rest. Sorry everyone! Will try to be a bit more jovial next time.

#2
Mr Toad

sorry you are having a bad day and hope the moan has made things better i have just had a moan an relationship thread , it dioes help sometimes to do so.

hope your day gets better x

#3
Dear Mr Toad, never worry about having a moan, we all need to let off steam sometimes. I get what you are saying. Try not to be so hard on yourself.

Radz x

#4
Thank you both! Bubble, I have looked at that other thread and posted a reply there.

#5
hi all it has been a while since my last post i have signed up for DBS and it a scary thought but i cannot continue like this i have been told that it will improve the condition alot .I have recently developed "restless leg " and the pain in my groin area is some times very intense i can still walk but when i am sat in chair too long a sharp continuose pain erupts and find it hard to keep steady It driving me crazy the next fishing seasons beckons and i want too enjoy it this year .Has any one had DBS if so let me know via message bored or email .I have heard a few bad tales and some good so im no wiser if this the treatment for me or even if they will do it looking forward to 1st consult in oxford soon

#6
same here, if i plan to do something, nothing big , a huge task is out of my bodys scope these days, for example a shower, shave and a short back & sides with my electric shaver, now if i plan this my medication dont kick in, a few doses sometimes, its as if my Pd is telling me NO you will do it when im ready and not before, i find this very strange , happens on a regular basis......this hits me for six when i really need to do something important, does my head in big time, so these days i do what i can on the spur of the moment and catch it unawares lol strange and its my own body !! not anymore i feel.........*sighs*

#7
mr toad its good to vent occasionally lol a good blow out dont harm nobody hehe.........my family call me victor lately hehehe victor meldrew ( i dont believe it !!) aka richard wilson fame lol........he is the best venter worldwide dont ya think *winks*...............ever need a vent again mr toad, im yor man, anytime,........my Dai cap is always available hahaha
Hugh aka Victor (welshbearuk) meldrew

#8
i mr toad winge away ,i do it all the time:wink:if we dont let steam off ,we will be climbin the walls.i think all all no exactly how you feel bout the bathroom,before you have your shower,we have all the things we wonna do around the house,hence clean the shower,but by the time we have washed and dressed its took our energy rite out of us,and then all need to do is rest.ur not alone when family dont seem to see the prob,they dont tidy up after there selfs,they think moms here she always done it,she will carry on.but it not simple as that is it.i have domestic cleaners come in now with carers as well,so i guess im lucky in that way,but im not lazy ,i still try my very hardestest to do jobs around the house,even if it practically kills me doin erm.before i had help,i had to keep naggin and naggin for help,till i blue in the face,i hae doin house work and others sittin on there butt watchin tv and not helpin.i guess all we can do is keep askin them,and keep askin till they see you can no longer do it,to me its selfish,but people includin close family members take things for granted,which is so unfair.i hope you manage to get your family to understand u need lot more help around the house mr toad,good luck:smile:

#9
Welshbearuk - I think that I know what you mean. I have to do things when I can - I have been known to shower & wash my hair at 4am when I am "on". I suppose the important thing is to decide what exactly is "important". I doubt very much if people who care about you feel less of you if you have not had a shave!

I wish you all the best

#10
Hi alij thanks for your post i could have written it myself today My family seem to think i have no difficulty in doing housework plus going to work, im very independant but sometimes just want some help Take care

#11
Thank you all for your supportive replies. I haven't been on the forum for a few days and it was lovely coming back to such sympathetic messages.
Despite being ill with a stomach bug at the start of the week I have had a good few days.
I bought some second hand furniture and when we went to collect it the vendor turned out to be a pwp! Half an hour of comparing notes and a cup of tea later I have a new Parkies buddy.
Last night I went out with friends for a curry. I was so wriggly I couldn't use a knife and fork so ate with my fingers,no rice for me! Nobody at the table batted an eyelid, they just treat me the same way they always have and accept my limitations.
I hope all of you have a good day or at least a day with good bits in it!

#12
Hi mrtoad,

I've just read your original post and all the replies and it all sounds so familiar, I too find that I have to do things when I can, not necessarily when I want to do them. If slowness was an Olympic sport I'd surely win a medal. I never liked housework all that much, but I'd love to be able to do it properly now! Like you,I find it helps to just have a moan to anyone who'll listen. It really does help to know that there are other people who understand.

Wishing you all the best,hope today is a good day for you followed by another one tomorrow:smile: