ME/CFS Contributing – Because I Can

04/17/2012

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© 2012 TSM
In August of 2000, I was able to celebrate my full return to health by summiting Mt. Kilimanjaro in Tanzania Africa.  It was a personal moment.  When I returned home, I decided that I wanted to show my gratitude by giving back.  The next Spring, I joined the annual Walk for Hunger sponsored by Project Bread.  On the first Sunday of each May, we walk 20 miles to raise money for all the food pantries, food kitchens and food programs throughout the New England region.  This year will be my 12th walk.
 
And each year, with every step, I remember my ME/CFS days when I couldn’t walk across a room without collapsing in a chair.  I remember the darkest bed ridden days.  I remember my anger at the medical profession – which I admittedly still harbor.  I remember the frustration with my snails pace recovery.  But mostly I remember that I am blessed to be well and that there are so many who are still struggling with this cruel disease.

I set up my donation webpage this morning and it is an honor – yes truly – to be able to contribute because now I can.  And I encourage everyone to be a positive influence on those around you and especially on yourself despite your struggle – or a loved ones struggle – with ME/CFS.

Are you able to contribute in any way?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

If you wish to make a donation, here’s a link to my webpage.
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ME/CFS Support - Words of Appreciation

02/14/2012

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It’s Valentine’s Day.  One of those loosely historical, made up days to sell stuff.
OK that was cynical.  But we seem to have developed an entire year of these almost monthly events which push us to do or buy something.  Or feel out of it if we don’t.

For me, today is an exception.  When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - family, friends and strangers too.  Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution.  This sometimes kept me from seeing the people around me who cared and wanted to support me.  I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me.  It started a tradition that I still follow.  Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them.  Yes, that’s hokey.  But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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ME/CFS Mantra – Pace, Pace, Pace

01/17/2012

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© 2012 TSM
We had a light snowfall last night so I went out to shovel the sidewalk this morning.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So this morning, as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.

How are you doing with pacing?  What challenges you the most?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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Thankfulness – Sometimes Hard to Find

11/29/2011

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© 2011 TSM
Thanksgiving traditionally generates clichés about thankfulness.  The mantra basically goes like this:  Be thankful for what you DO have, not what is missing.  Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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