Kim_Cooper created the topic: Makes me want to SCREAM!!!
I feel like SCREAMING!!.. Or listing to Michael Jackson.. 'Makes me wanna scream..'
How was everyone's New Year Eve..? Christmas..? Holidays..? Etc...
I hope you all enjoyed your festive season with loved ones, and hopefully reduced pain!!..
I just need to vent and moan and scream a little..
I have no one to take to, I live with just my Mum.
So I need to vent..
I'm going crazy.. We are together 24/7.. She's my full-time carer..
My Christmas was good, draining but good..
I feel like I haven't stopped!!.. Between shopping for gifts, Christmas food, visiting family, Christmas, NYE etc.. It's been
Nonstop!!.. I feel so drained and my bones feel broken..
I just want to curl up in bed for a week and sleep..
I did a foolish thing by taking my Mum with me to the pain clinic in December..
The specialist wants me to start being a little more active and start a swimming program and see a cognitive behavioural therapist etc..
It seems that all Mum heard was 'active'...
She's been on my back about being active..
We went to the shops nearly every day the week leading up to Christmas, we were there for about 2 hours each time and I was in agony!! So I would sit down for 10 minutes..
She then says 'he wants you to be active!!' I said 'not like this! In SMALL doses, little activity- as in 5 minute walks a couple of times a day..'
She insists that I rested for 5-10 mins so I did exercise and rest..
She doesn't get it.. 10 minutes of rest and 2 hours of walking is NOT right..
I need to do little amounts often..
Pace myself.. Walk for 5, rest for 5 etc.. And I should never be out for 2 hours or more, it kills me..
But she thinks I should!
We are butting heads, she seems to have heard something completely different..
But at the end of the day- its MY body, I know what it can and cannot handle.
I am the one living in pain 24/7 for the last 7 years..
I am the one who researchs it every day!!..
She just said to me she thinks we should get out today..
I honestly can't even imagine getting up to go to the toilet let alone 'go out'..
I told her NYE has really killed me and I can't, and she said 'you NEED to get out everyday and be active!'..
I wish I never took her with me to the pain clinic, she Kees using it against me!
"Get up, walk, be active, move, get out, you need to go out, you need to walk, you should be able to do more than this etc.."
For NYE we stayed at a hotel, an hour away..
She doesn't realise just sitting in the car for an hour killed me..
So when we got to the hotel and I needed to rest she couldn't believe it, she was like 'what? You haven't done anything!'..
Then after resting I pushed myself to go for a walk..
We walked aggggges!!..
About 2-3 hours.. But because we sat for a drink a couple of times she couldn't understand why I was so exhausted and needed rest AGAIN.. Sitting is NOT resting for me, it hurts!!
Laying down is resting..
So walking for 2-3 hours and sitting a couple of times for 20 minutes is not resting..
She just doesn't get it..
This happened all day and night..
3 hour walk, then I needing rest (lay down) walk for 2 hours (lay down)..
Etc.. All day and night..
And now I feel like hell, it took soooo much out of me!!
I'm in agony, I'm tired, I'm weak and drained..
But she can't understand why, because I did 'rest'..
Now she thinks I need to push through it and get out today..
Kim, I'd also be making sure your mum talks with your specialist again to put her on the right path. Email your specialists with a clear outline of what's happening with your mum and her perception of what he said. Ask for his assistance because you can't get though to her but she'll listen to him.
Good luck with it and taking prompt and appropriate action by contacting your specialist should resolve your problem.
Hugs to you,
grappers replied the topic: Re: Makes me want to SCREAM!!!
Kim this is going to be hard to change unless you can get your treating doctor to qualify what was said and make it very clear of his intentions, we know what is meant by trying to remain active, but we are not normal, so normal activities are out of the question, good luck I hope you can get this misunderstanding cleared up as soon as possible for both of your sakes.
Mary replied the topic: Re: Makes me want to SCREAM!!!
I agree with Don Kim; you will probably need to have your Dr. clarify with your Mum exactly what is meant my "a little exercise". When you have chronic pain and you haven't really moved for years, you have to do it in baby steps. You cannot "push through" chronic pain like you can with some other forms of pain. It just stirs up your nervous system and you are worse off than ever.
The Spoon Theory suggested above is excellent.
There is also a book which explains chronic pain better than anything else that I have read - and also tells you how to start moving without stirring everything up. It is called "Explain Pain" and it is downloadable from here:
I have found it really useful, particularly with family members who don't quite understand the meaning of chronic pain.
I hope that you can slow down because at the moment you are doing what we call "booming and busting". In other words overdoing things and producing major flares and then resting and starting all over again.
Best of luck and keep us posted.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
BIY replied the topic: Re: Makes me want to SCREAM!!!
The previous posts have given some excellent resources to show your mum about CP activity and pacing. When the physio put me on a gradually increasing activity plan at the start of 2012 it was broken down into really small amounts of activities e.g. 5minute walk 3 times a day, 15 minutes of housework a day etc with lots of rests in between. I was told to use a timer to make sure I didn't overdo it because it was explained to me that I needed to build up the activity level very slowly over a long period of time so as not to flare up my already over sensitized central nervous system. Otherwise you end up with the boom and bust cycle.
Can you ask your pain specialist if they have an activity diary sheet and ask them to set specific activities and time amounts? The physio set goals with me each week and was very specific about how long I could only do them for plus I had to record it all on an activity sheet and show him. That way he could then review how I was coping and either increase or decrease activities accordingly.
This way there would also be specific guidelines for your mum to see. It seems like your mum has only heard half the message and it is true that we do need to work on increasing our activity.....but she's missed the second half of the message that it needs to be slowly over time very gently so as not to cause flare up.