# Can Do Weekend



## Mistique (Jun 18, 2014)

I'm sure none of you have ever heard of the Can Do Weekend. I would be surprised if you had as apparently its a Dutch thing. It's a treatment program run by the MS fund (a Dutch organisation) obviously for people with MS (and their partners) and a study that goes with the treatment program to test the effectiveness of the program. I signed up for it a few weeks ago and was lucky enough to get accepted in the treatment group (rather than the control group).

It's in a beautiful hotel in a lovely park.

We don't have to pay a thing.

So far so good...

The hard part about it is that its rough. It's a bit like booth camp for MS. Not that I care much about rough.

The treatment program is aimed at helping you change your focus from all the things you can't do to all the things you 'Can Do'. The idea is that a lot of people with MS often loose their sence of self confidence. There are so many things that they used to be able to do that they can't do any more. Their perspective of who they are and what they can do changes. Often they don't know any more what they can or can't do and to be on the safe side they avoid more things than they need to. I know I did and do. LIke I didn't work in the garden anymore as I was afraid it would trigger the faitigue and as a result I  might not be able to do much of anything for days (I've had faitigue attacks like that before a lot and its no fun when the faitigue gets you so tired that you walk in the supermarket and all you can do is stare at the other people as you don't understand why they are there or for that matter why you are there)

In the treatment program they push you over your boundaries. Over all of them. Physical boundaries and emotional boundaries.They make you do the stuff you think you can't do and more. They have a neurologist, nurse, psychologist, psychiatrist, fysiotherapist, and several other professionals work with us so we can cross the boundaries safely. It's what makes it rough. You wear yourself out, emotionally and physically. I don't care about that. If it helps - and the study so far shows that it does help in making the MS a less dominant part of your life - I will do most anything. Together with my boyfriend 

So, I will be going Friday morning and will be back sunday night.

I can't wait.

I will let you guys know how it went, but probably not straight away as I probably will be too tired at first.


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## Pandora (Jun 18, 2014)

This sounds promising Mistique. I can very much relate to what you describe, I am still not sure of me 5 years after my back injury and being unable to walk. My lack of confidence and fear holds me back. I think this is encouraging treatment for the 'can do'. Sounds nice to be away together, to be in a nice hotel in a lovely park for the weekend. Here is me hoping they are gentle with you, though I know that they know what is best. Hugs and good thoughts, I'll be waiting to hear all about it. Get plenty of relaxing snuzzle time too with your lover, so important to rejuvenate with love, there is no peace like that.


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## Paulbee (Jun 18, 2014)

Disabled myself, but epilepsy's not as serious as some disabilities. I always try to focus on what I can do and maybe it's part of my slightly eccentric view of the world that helps my writing. Hope it goes well for you Mistique. We demand to hear from you next week or else :ChainGunSmiley: this might happen heehee!


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## Mistique (Jun 19, 2014)

Pandora said:


> This sounds promising Mistique. I can very much relate to what you describe, I am still not sure of me 5 years after my back injury and being unable to walk. My lack of confidence and fear holds me back. I think this is encouraging treatment for the 'can do'. Sounds nice to be away together, to be in a nice hotel in a lovely park for the weekend. Here is me hoping they are gentle with you, though I know that they know what is best. Hugs and good thoughts, I'll be waiting to hear all about it. Get plenty of relaxing snuzzle time too with your lover, so important to rejuvenate with love, there is no peace like that.



I don't need them to be gentle, I need them to be effective. I will definately enjoy my time with Ferdy  I'm so impressed with him that he is coming with me as this weekend will be rough on him too.


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## Mistique (Jun 19, 2014)

Paulbee said:


> Disabled myself, but epilepsy's not as serious as some disabilities. I always try to focus on what I can do and maybe it's part of my slightly eccentric view of the world that helps my writing. Hope it goes well for you Mistique. We demand to hear from you next week or else :ChainGunSmiley: this might happen heehee!



Now that made me laugh  Thanks for that.


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## Paulbee (Jun 19, 2014)

Never seen that chain gun smiley before I joined this site and it made me smile lots. Glad to share a giggle with anyone.


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## dither (Jun 19, 2014)

Sounds good Misti,
and it sounds interesting,
good luck.


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## Mistique (Jun 19, 2014)

dither said:


> Sounds good Misti,
> and it sounds interesting,
> good luck.



Thanks


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## Gofa (Jun 20, 2014)

http://www.taichi-utrecht.nl/docs/taiji-ms.pdf
i have had tai chi greatly assist in the recovery of my body. This is a can do. Perhaps worth a research.  One point is I now complete the form in a local heated swimming pool taking weight away as a function of depth saves stress through my not one careful owner body. There are sneaky ways around things.  I call them "go rounds" 
i used to educate on disability being more internal than physical. Not being able to do something is not a disability it's a limitation. 
Disabilities grow in your mind whereas Limitations tempt you to find a way to beat them . Go around them or find something better to do that does not involve them


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## Mistique (Jun 24, 2014)

Well, I am back 

I have started this post several times now, but to discribe what this weekend has done - what happened - is hard. So much happened. Some of which I certainly didn't expect. It caused a great deal of turmoiled in my life and the dust is slowly settling down at the moment.

Lets start at the beginning though; it was good.

Now the 'what' happened. That part is a little easier to do. The weekend started on Friday at 11 am and ended on sunday at 5 p.m. Inbetween we had therapy almost non stop from early in the morning until late at night. That doesn't mean it was all 'talk' sort of therapy. We also went riding on a tandem bike (twice), did dance classes twice and had a theatre night. All of it however was aimed at our goals for the weekend so it was all hard work. We started the weekend making our treatment goals based on the major stressors in our life. The idea is that the major stressors in your life and the stress response you have to them causes most of the limitations in your life and not nessessarily the MS itsself. Also the fear that most of us have developed causes many limitations that don't nessessarily have to be there. Sure when you have lost strength to your legs you can't walk very far, but that doesn't mean you should be in a wheelchair all the time. You can still do things, like ride on the back of a tandem bike. The aim was to give people control back over their lives (rather than hand control over to the illness).

My treatment goal: I give my self the right to excist

In practice this meant I had to learn to allow myself to express the emotions I feel. So be angry when I feel anger. Cry when I feel sad. Express fear when I feel it. As I often fool myself into thinking that these emotions don't excist and I am actually coping just fine. If you've read any of my other threads you will have seen me taking about 'being strong' all the time.

The results...

This is where it gets harder to discribe it. It felt like someone took a wrecking ball through my life, but this isn't the right way to discribe it as that would make it sound very negative and it wasn't. It did cause a great deal of confusion and made me put question marks with several major parts of my life. The first is my relationship. My boyfriend was there too - for which I love him dearly - and they were quite rough on him. On the fact that he doesn't work, on the fact that he hides his emotions and always acts like he knows it all, but struggles at making real connections, about the fact that he uses weed so many times a day that he's basically high all the time (and is probably an addict). They were very rough on him, especially the psychiatrist, and he hated the guy to bits. He felt attacked and as a result spend most of the weekend fiersly defending himself and therefor constantly resisting the treatment. I watched him rebel all the time and it annoyed me. I wanted him to take responsibility. At the same time they were getting under my skin. I was starting to express my anger towards my boyfriend and without explaining it to bits (as I normally did), but simply stating it if I didn't like something. He would then stare at me with these huge angry eyes (he doesn't take critisism well), but I didn't back down. So I would say "You can look at me like that, but it doesn't change my opinion". I started doing that more and more often as I started to see that the world didn't fall apart if I simply said I didn't like something. The therapist started to focus in on how I put myself in a position in a relationship in which my partner can control me and I found out that this is because I am afraid he will leave. So I started to let go of that fear. I started to state my opinion more clearly and if that meant he wanted to leave me then that is what he woud have to do. He didn't leave. I ended up drawing the conclusion that for me being connected is the most important thing in a relationship and with a partner who is high all the time that isn't an option. So I told him that if he didn't get help dealing with the addiction I would leave him. It was rough, because I know I won't back down on this one. Not again. I am a very loving and understanding person, but this is the bottom line. He can go on using all he wants, but then he's not the man I want to be with. It was really rough on him, because he already had this psychiatrist to deal with and now I was on his case as well. He didn't leave though. He continued to fight it out with me and I was impressed with that. We have never talked as much as we have in the past few days. He says he wants to quite using and I so hope he means it, but he is an addict so I will first have to see him act on it before I believe it. I will support him all the way, but only if he continues to take the steps he needs to take. It was really rough on me too. The thought that this could be the end for him and me. It made me cry a lot. We're still here though and we are still dealing with this together so that's a good start. Most importantly though, I am now more true to myself.

There were other area's in my life they questioned too. Like the disabililty benefits I will be receiving pretty soon. The psychiatrist questioned if I should have this at all and perhaps I should be working instead. He stated that in order to get disability benefits you have to be ill and have to stay ill and that was not a good place to be. Of course I agreed. After having discovered my new abilities this weekend, and discovered that despite the faitigue I could still do a hell of a lot, I was now determined to work again. No benefits. Work, like every body else. So I got home after this weekend - buzzing with energy - and ready to take on the world. Within a day all the faitigue problems - but especially the cognitive problems - came crushing down on me once again. I hurt my hand on a mixer as my faitigue made me grab the blades whilst they were still rotating. It hurt a lot. I put my computer in the wrong cabinet (one I would never put it in) and then panicked thinking it was stolen. My brother discovered it in the wrong cabinet and even then I had no memory at all of putting it there. I put butter in the microwave (in the wrong sort of package) cause it to start a fire (luckily I put it out quickly saving both the microwave and the house). None of them were major incidents - I didn't burn the house down - but the realisation that I could have caused a major incident made me realize just how strong the faitigue and cognitive problems are and that they don't just get 'fixed' in one weekend. They are still here. It made me realize that I have a very real disability and that I will never be 'healthy' again. I will be able to deal with it better (there are ways to battle the faitigue and cognitive problems this weekend has taught me - there is a program for it) but that is a long and hard process and untill then I am very much disabled. I have an illness that is never going to go away. That realization came during the weekend when my boyfriend wondered outloud (after having heard others talk about something similar) if he had grieved over loosing his healthy partner and I came down on him which such anger screaming at him 'No of course you haven't and I hope you never will, because I am not ill." The psychiatrist looked at me and asked me 'what are you doing? Why can't he ask himself this very legitmate question? and I knew damn well why and that was because if my boyfriend had reason to grieve over loosing the healhy version of me then so do I. I cried my eyes out when that happened.

So all and all I think the wrecking ball wasn't a half bad description after all of this weekend 

I have lost securities in my life - like in my relationship - I realize now that I will never get healthy again (which is very rough), but - and this is the silver lining part - I am more true to myself and I know now that I have more abilities than I knew I did and that if I work hard I can battle the faitigue and I can win that battle and in time there is a change that I will be able to do most things that other people do. There is a risk that I will never get there - as the disease might deteriorate at any time - but at least I now know what weapons I have to fight it. Since the weekend my boyfriend has done some pretty promising things to work on his future, so that has me hopeful that we will be okay. He's stopped rebelling (well most of it), he has agreed to go to an addiction center with me to get help (the appointment is next week thursday) and he is talking about his feelings more than he ever has. I am finally feeling that connection I long for so much in my relationship.


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## Mistique (Jun 24, 2014)

Gofa said:


> http://www.taichi-utrecht.nl/docs/taiji-ms.pdf
> i have had tai chi greatly assist in the recovery of my body. This is a can do. Perhaps worth a research.  One point is I now complete the form in a local heated swimming pool taking weight away as a function of depth saves stress through my not one careful owner body. There are sneaky ways around things.  I call them "go rounds"
> i used to educate on disability being more internal than physical. Not being able to do something is not a disability it's a limitation.
> Disabilities grow in your mind whereas Limitations tempt you to find a way to beat them . Go around them or find something better to do that does not involve them



Yes, that definately sounds like Can Do. So what did you need recovery from? MS?


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## escorial (Jun 24, 2014)

life's a journey kidda


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## Mistique (Jun 24, 2014)

escorial said:


> life's a journey kidda



I know, but at least I have some sign posts now on what direction I could go in


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## Gofa (Jun 24, 2014)

Paralysis.  I crushed a disc in my spine at 19 and lost function in my left leg. Substantial pain for 5 years no sleep. I was never supposed to recover but it seems I heal well. Forty years on it's still a problem but marginalised. The fear of it returning is still there
i used to play a lot of sport, that went. I surfed so changed to kneeboarding as could not stand. Being in water 5 times a week and the leg flopping around with a flipper on it helped.  5 years later the muscles started to move. I never gave up 
My suggestion is take every payment offered and call yourself self employed. Get them early and use them to extent expand the can do's. Tell the benefit agencies more you give me now less long it will be that I'm in full care. 
what can you buy thats fun. Obviously a tandem bike is worth a try.
Remember water  you can exercise in it with out fear of falling. I do Taichi in a pool since I damaged my knees   it's very cool   In water you can fly 
watch comedies find more things to laugh about 
one final point. Dead doctors don't lie. The average age of a doctor is 57. The rest of us it's 75. Dont take any advice on living long from them. Highest divorce rate is psychiatrists. Don't take relationship advice from them. 
I have a friend we met weekly in his spa pool smoke cigars and drink. The subject for conversations is how to improve our lives and enjoy them more for not much money. The last step forward was underwater headphones. I stay swimming longer and enjoy it more
starting writing down a bucket list. A would be fun list must try list I've never done etc 
I've had too many shit sandwiches in my life. I've always felt the sandwich filling should change  I'm still optimistic. 
My favourite saying is living well is the best revenge. 
Look at Taichi. It helps on many levels the biggest being depression  do some research     it changes you too for the better
Sun Tse in the art if war states when confronting a superior adversary seek allies. Find things and people that help you    
Finally tell yourself every day that you are a lovely person   It's amazing the effect that has. 
Cheers


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## Gofa (Jun 24, 2014)

One thing that occurs. A normal person can use around 45% of their full strength potential. It's this low as we instinctively use oppositional muscles  with Taichi then potential is for 75%. Note the old wisen men that can still do stuff.  It's a  sign. Good balance and strength are two key issues looking forward  research benefit payment to learn  in my country the elderly are taught for free as it lowers falls and hip damage to the point it is seen as health funded


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## Pandora (Jun 24, 2014)

Mistique, I read this not logged in at work, overwhelming, tears. Read it from email and now again. So much to feel and each read brought me to a different place. I can imagine the trauma, the self awakening, the breakdown, the building up you experienced this past weekend. The reality for you and for your dear partner. You are a proud woman, strong with pride. You have been fighting strong against being humbled by this illness. Your weekend allowed you to break and start over, allowed you to open up with the disappointment that comes from living with an addict. That is a challenge in and of itself. I felt the hope strong in my last read, realistic hope, the kind you can grab onto. They didn't have to go easy on you, though I had wished they would, you can take it all and make it work. This change was meant to be, the path has been laid,
it feels bright to me. As you know my thoughts and prayers won't ever leave you, they couldn't, you live in my heart, bless yours.


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## Mistique (Jul 7, 2014)

Gofa said:


> Paralysis.  I crushed a disc in my spine at 19 and lost function in my left leg. Substantial pain for 5 years no sleep. I was never supposed to recover but it seems I heal well. Forty years on it's still a problem but marginalised. The fear of it returning is still there
> i used to play a lot of sport, that went. I surfed so changed to kneeboarding as could not stand. Being in water 5 times a week and the leg flopping around with a flipper on it helped.  5 years later the muscles started to move. I never gave up
> My suggestion is take every payment offered and call yourself self employed. Get them early and use them to extent expand the can do's. Tell the benefit agencies more you give me now less long it will be that I'm in full care.
> what can you buy thats fun. Obviously a tandem bike is worth a try.
> ...



Hey, Gofa, thank you for this it helped a lot. I am too tired at the moment to express the how or why's, but thank you. You made me smile when I was feelilng quite low and that is a rare pleasure.

- - - Updated - - -



Pandora said:


> Mistique, I read this not logged in at work, overwhelming, tears. Read it from email and now again. So much to feel and each read brought me to a different place. I can imagine the trauma, the self awakening, the breakdown, the building up you experienced this past weekend. The reality for you and for your dear partner. You are a proud woman, strong with pride. You have been fighting strong against being humbled by this illness. Your weekend allowed you to break and start over, allowed you to open up with the disappointment that comes from living with an addict. That is a challenge in and of itself. I felt the hope strong in my last read, realistic hope, the kind you can grab onto. They didn't have to go easy on you, though I had wished they would, you can take it all and make it work. This change was meant to be, the path has been laid,
> it feels bright to me. As you know my thoughts and prayers won't ever leave you, they couldn't, you live in my heart, bless yours.



Pandora, warm compassion as always. Thank you for that.


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## Mistique (Jul 7, 2014)

Sorry guys for not having responded to this or to anything else for that matter. The Can Do weekend very effectively knocked me out. Whilst I was still sort of okay at first the hit came slow. The faitigue is overwhelming at the moment. I will be okay, just not yet. So bare with me. I will be responding more at some point in the future, but not just yet.I need to chase of this herd of elephants first that somehow have found it nessessary to weigh down my body and mind. Perhaps I should get a mouse. They are scared of them, right?


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## Pandora (Jul 7, 2014)

Thanks for responding Mistique, you are in my thoughts, hope this passes soon.


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## Gofa (Jul 8, 2014)

You are very clever grass hopper. In the secret Sun Tzu scrolls it is said "When confronting large groups of elephants seek allies amongst small mice" 
another good idea is 
Sit in the sun a bit each day, say 30 mins if possible, but don't get hot. The vitamin D is useful.
google vitamin D


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## Mistique (Jul 9, 2014)

Pandora said:


> Thanks for responding Mistique, you are in my thoughts, hope this passes soon.



Your welcome. I hope so too.


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## Mistique (Jul 9, 2014)

Gofa said:


> You are very clever grass hopper. In the secret Sun Tzu scrolls it is said "When confronting large groups of elephants seek allies amongst small mice"
> another good idea is
> Sit in the sun a bit each day, say 30 mins if possible, but don't get hot. The vitamin D is useful.
> google vitamin D



You sure have a way of making people smile 

I know all about vitamin D from my neurologist. I take high dossages of vitamin D to get my levels up. The sun hasn't been too kind this summer, so it often doesn't come out (not even for half an hour). When it does come out however I have this lovely lounge set out in the garden and I more or less live outside  I sit outside in the shade all day long and it does me a world of good.


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