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Amanda Thorpe's Blog: Crash.


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#1 Joelf

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Posted 14 June 2015 - 09:38 PM

Here's an extract from Amanda Thorpe's latest blog:

CRASH

...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on...…Read more!!

 

 

 

This is another fantastic blog, written in Amanda's own inimitable style, which I know you will find amusing and touching.

 

Enjoy!! :happy:


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#2 Shelley Ensz

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Posted 17 June 2015 - 07:29 AM

Thank you for the very thought-provoking blog, Amanda!

 

:hug-group:


Warm Hugs,

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#3 Margaret

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Posted 20 June 2015 - 05:07 AM



...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on...…Read more!!

 

<< Or, should I actually partake of the occasion, I fade halfway through, by the time I arrive at said destination, get into the joint, sit, order and stare down the first plateful, I have flopped, fizzled out, faded away, succumbed to the familiar, tired and wanting to go home. >>
 

 

WOW.....Amanda....this is soooooooooooo Gareth!! He wants so much to do things and go places, but then backs out and says *so tired*. I never realized the extent of the *tired*. Thanks for opening my eyes on this.

Take care, Everyone.
Margaret
 



#4 Shelley Ensz

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Posted 23 June 2015 - 12:39 PM

Hi Margaret,

 

Please continue to cut Gareth a lot of slack. Fatigue can look and feel like laziness, but you know for sure it's not when you're missing out on fun things that you were really looking forward to, for lack of endurance.

 

It's a very real issue with scleroderma, and other chronic illnesses, that fatigue can make it simply impossible to do all the things we would normally do. It often exerts a shock on all aspects of our life: work, hobbies, and socializing.

 

When I realized this, I eventually rearranged my whole life to accommodate my varying and diminished energy levels. Now all my close associates know that there is an inherent "IF" in all the plans I make. I will prioritize whatever we have planned on, and I will do my best to pace myself and rest to try to be in shape for it; and i will look at other alternatives, too, such as maybe suggesting take-out at my place rather than dinner out, etc., whenever that's possible.

 

I've learned to never agree to do anything I don't really want or could reasonably plan to do, because with fatigue and illness, those things are the very first to bite the dust, so it is kinder to just firmly but gracefully decline the invitation, right up front. And to let others know, as soon as I do, that plans are going to have to be changed.

 

For what's left, I try to schedule and pace myself. I also expect to bite off more than I can chew occasionally -- because it's very challenging to predict the largely unpredictable -- and I try not to be too hard on myself when I pay the piper (because self-denigration and remorse also defrays that precious vital energy).

 

I strongly recommend simplifying life to the absolute max. Sometimes that simplification includes focusing our social life entirely around people who are flexible and understanding. 

 

As Amanda so aptly and cogently pointed out, it is very stressful for us to try to maintain contact with people who are prone to being inflexible or not understanding. And it is pointless for anyone with low energy reserves to try to tolerate poor behavior or impaired relationships, simply because we just plain don't have the extra energy to invest in trying to sort those relationships out.

 

The unending stress of chronic illness will eventually cause us to either bend or break. I personally prefer bending rather than breaking, so I try to keep my goal as being flexible and resilient, instead of trying to plow along without realistic adaptations to the changing circumstances that less-than-exuberant-health imposes.

 

I know it's probably really hard for you to figure out what end is up with Gareth. But there is a handy rule of thumb to try to figure out if we are depressed or fatigued at the moment. Depression makes us just not want to do things, even fun things. But with fatigue, we really want to do things, but we just can't muster the energy to do them (or to do as much of the activity as we'd like.)  Since depression can cause fatigue (and vice versa), it's helpful to figure out what's missing, the desire or the energy.  Depression can zap both at the same time, but fatigue will only zap the energy, and not the desire.

 

Because fatigue leaves us still straddled with the desire but often not the ability, I've found it is most helpful to be frank and accept the situation as soon as possible, so that my own rebellion or guilt or disappointment doesn't drain my batteries even further.

 

Give Gareth some extra hugs, just from me!

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 quiltfairy

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Posted 23 June 2015 - 04:45 PM

I agree with you Shelley; my family reunion was this last Sunday and I went to the picnic for about an hour and half, then I snuck away as just that little bit exhausted me. My aunt did ask where I went to and I said I had come home, I just did not want to affect everyone else's celebration.

#6 Margaret

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Posted 24 June 2015 - 01:20 AM

Thank you.....like I have said before.....you all help me understand what he is going through.

 

:hug-group: :hug-group:

 

Take care, Everyone,

Margaret



#7 jennuwhine

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Posted 24 June 2015 - 08:20 AM

She does have a way with describing the feelings and thoughts we go through.

 

I don't hold it against anyone if they can't handle being around this illness. I really don't blame them. I remember what it was like to be healthy and to want only the best in my life. How it felt to have no understanding of the pain a disabled person goes through. I wasn't insensitive, or mean, I just wanted the fullest, happiest life I could have, and my empathy would make that hard to do around suffering.

 

Now that I am a part of this club of suffering, I understand a great deal more and I can offer others what I have learned. People with and without illness. I have learned that I can't judge others because I can't feel their pain, whether it's physical, mental or emotional. I have learned that focusing on the things people don't understand, or any negative treatment, will only drag me down. I want to be happy for as long as I am here, so I will focus on what I do have, and the friends who do care. I will be thinking of those whom I have lost, that they will find strength and understanding, so they don't miss out on the beautiful souls of those who have suffered and have learned and grown from it. Those who have found their hearts and strength from this constant battle and are so willing to share the hearts that they have found to empower others and give them hope.

 

I choose to see the silver lining in the clouds. I choose to see the gold within the mud. I choose to see the heart behind the mask.

 

(I see some beautiful hearts in here from what I've read. Nice to meet you.)



#8 Amanda Thorpe

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Posted 28 June 2015 - 12:24 AM

Hello Margaret

 

You are most welcome and I am glad it helps you understand what's going on for Gareth. Fatigue is such an innocuous word, a little tired, a little sleepy, a little understated!

 

Take care.


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