A typical day

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Sacha
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A typical day

Post by Sacha » Tue Oct 24, 2017 12:07 pm

Until the last couple of years, CP had little impact on my life. I did what I wanted, went out when I wanted, went on holiday etc. I just had to be careful what I ate.

Now, I feel, my illness has taken over, though I have tried not to let it.
If I am not in pain I am in constant discomfort and not able to do much.

I often read on here that people live "busy and fulfilling lives" How?

I would be interested to hear from those with painful CP what their typical day is like.
Sacha

26.12.11
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Re: A typical day

Post by 26.12.11 » Tue Oct 24, 2017 8:25 pm

I done a pain management exercise and cbt course.
So first thing I do is a few stretches, deep breathing. If it is a good day I can get into shower after, if it is a bad day, a little lie down to recover. Dave makes my breakfast. Get dressed, take dogs out a walk, length again depends on good or bad.
Then I attempt some housework, no ironing as Dave does this and has done so pre CP.
Lots of stopping and forcing my self on.
I dont follow time periods, just go with how body is reacting. Another walk and more exercises. Mainly pilates and yoga based. In total I do about 2/3 hours of exercises and cbt. It seems long but it is spread over all day.
On bad days I try do do a good day routine but there is a lot more resting.
Sharon

Richard2017
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Re: A typical day

Post by Richard2017 » Wed Oct 25, 2017 7:40 pm

Hi Sacha,

Really sorry to hear things are difficult at the moment. I'm obviously not going to add anything here because I'm still at such an early stage compared to most people on here, but I am also interested to hear how people get on during a typical day.

On a slight tangent are you still hoping for some improvement now that you've had the gall bladder op? I thought you were thinking that might help with some of the more recent issues.

Either way hope you get some relief soon,

Take care

R
Richard

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Sacha
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Location: Sunderland, N. East England

Re: A typical day

Post by Sacha » Sat Oct 28, 2017 3:20 pm

Too early to know, Richard. Difficult to pinpoint cause of pain with 2 organs involved.
My CP continues to progress with multiple calcification in the main duct.
Sasha

No one seems keen to describe their average day.

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Janey Dal
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Re: A typical day

Post by Janey Dal » Sat Oct 28, 2017 3:33 pm

Hi Sacha

As a non-sufferer I can only suggest that there is no such thing as an ‘average’ day with CP.

In Alan’s case certainly there isn’t an average day. Each day is different in terms of pain and ability to carry out simple tasks. We have learned that if he isn’t up to doing something one day we just wait and within a day or so he is usually feeling much more able to do things.

With Alan I have to say that sheer bloody-mindedness keeps him going most of the time. Sadly he has just go used to being on constant pain. Sometimes he deals with it better than others but there is no doubt that distraction is a key factor in his ability to cope with pain.

He has started playing games on my old iPad and that seems to work.

Hugs

Jane 😘

jon
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Re: A typical day

Post by jon » Fri Nov 03, 2017 9:26 pm

Sacha wrote:
Tue Oct 24, 2017 12:07 pm
Until the last couple of years, CP had little impact on my life. I did what I wanted, went out when I wanted, went on holiday etc. I just had to be careful what I ate.

Now, I feel, my illness has taken over, though I have tried not to let it.
If I am not in pain I am in constant discomfort and not able to do much.

I often read on here that people live "busy and fulfilling lives" How?

I would be interested to hear from those with painful CP what their typical day is like.
Sacha
"I often read on here that people live "busy and fulfilling lives" How?" - well that's not me if that helps. If you google CP and quality of life CP ranks as one of the chronic diseases with the worse QOL. Obviously not everyone is like that but probably the majority as all the QOL studies say same thing.

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MikeyB
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Re: A typical day

Post by MikeyB » Sat Nov 04, 2017 12:31 am

I’m not keen to post on this thread, because the only problem I have with CP is not being able to enjoy a good single malt, and having to take Creon.

Typical day? Wake up, check blood sugar, see if I can get out of bed. After a couple of attempts, get my feet on the floor, and using a stick and pushing down on the bed, try and stretch my legs vertical so the tremor stops. Using the stick, and using the wall for support get round to the bathroom and holding a grab rail, have a wee. Then it’s downstairs on the stairlift, grab the downstairs stick and make a double shot Americano and take two Tramodol for the hip and muscle pain. Back upstairs on the stairlift to have a sit down shower. Then get dressed. On a good day, I can get my underpants and socks on my own.

I could go on, but that’s Parkinson’s disease. I can’t move quickly at all, so any intestinal upset from the CP or Ulcerative Colitis occasionally means the washing machine is working overtime.

So why do I say all this? Not a great quality of life, is it? And Parkinson’s gets relentlessly worse. But I don’t let it get me down, in my head I’m perfect. I can still paint in oils, I can still read, and still laugh. I can take the dog out for a walk, me in my electric wheelchair. The good folk in the village won’t let me feel sorry for myself.

Quality of life is in your head. Don’t allow yourself to think about what you can’t do, just think about what you can. And do it.

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paul.m
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Re: A typical day

Post by paul.m » Sat Nov 04, 2017 4:11 am

Hate to say it but have something in common with Mike . Downside cannot have a drop of rum or whiskey and have to take a couple of Creon a day .

Get up coffee, breakfast with a creon go to work .Come home get changed have tea time meal with another creon fall asleep watching tv off to bed and start again .

Me and Mike are the lucky ones when it comes to CP .
Paul

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Sacha
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Location: Sunderland, N. East England

Re: A typical day

Post by Sacha » Thu Nov 09, 2017 10:53 pm

Thank you all for sharing.
Mike you are one of the strongest characters I've ever come across. After reading your post I gave myself a good boot up the backside.
You are right, positivity is the key to dealing with illness. I have a lot in my life to be thankful for.
Sacha

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Janey Dal
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Re: A typical day

Post by Janey Dal » Sun Nov 12, 2017 11:47 am

Hi Sacha

We all get ‘bad’ times when we find it hard to keep going -this is both sufferers and their significant others.

It is hard to keep positive but you are absolutely right - things could be one hell of a lot worse. Sadly we all have expectations when we are young of living a ‘normal’ healthy life.

When this turns out to not be the case it’s difficult to deal with. Sometimes as trite as it sounds we do have to count our blessings.

Hope you are feeling a bit more positive.

Hugs

Jane 😘

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