Blog Archives

ME/CFS Perception – The Crazy Stigma

2/28/2012

Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core. By comparison, other difficulties in everyday life are less stressful and seem easier to handle. And of course I began to think about my ME/CFS days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.

This person didn’t know me when I was sick and I was about to mention my ME/CFS struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS and even when I was well again, I would see that association flash across a persons face whenever I told someone that I was once sick with ME/CFS. Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation. I became less then whole. Damaged with the potential to be weak or needy. Maybe even a burden. So I hesitated.

Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease. And as I voiced that I had once been bedridden with ME/CFS, the response was OK. Better than I expected but it was still tinged with a bit of stigma. And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS frequently disappear from view.

Are you getting the crazy stigma when you talk about ME/CFS? How are you dealing with it? 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

2 Comments

ME/CFS Optimism – Brighter Days

2/21/2012

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It happens to me every year as the end of February approaches. Although I don’t see the signs of change in myself yet, one of my window plants catches my notice. There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf has been dropped. Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.

What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows. And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up. To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed. The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year. There’s a reaction to the increasing daylight that we experience on a cellular level. I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them. My sense of renewal and optimism are palpable. And during my ME/CFS struggle, it was a natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness. How are you utilizing this bright injection of renewed energy? 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 Support - Words of Appreciation

2/14/2012

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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

2 Comments

ME/CFS Gifts – Better Days

2/7/2012

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I live in New England where this winter has been unseasonably warm. I’ve had mixed feelings about it. Growing up with sledding, skiing and building forts, it seems unnatural. I miss the coziness of a cold winter - but not the hassle of ice storms and hazardous travel. The relatively warm weather could be a fluke or a harbinger of climate change. I won’t wander off on that topic…

Last week we had a sunny warm January day that reached 60. I went for a walk and felt all the usual stirrings of spring. Of course I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. I was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.

Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I knew that the 60 degree day was only a reminder of what was to come, avoid the pitfall of this wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.

How have you reacted to these gifted days? 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

2 Comments

ME/CFS Feeling Empty – Sleep Depravation

2/1/2012

4 Comments

I haven’t been able to sleep much since last Thursday. My mother-in-law, who we were very close to, suffered a major stroke and then struggled mightily for a few days before she passed away on Sunday. With our hearts broken, we’ve been wading through all the ‘must dos’ as we prepare for her funeral on Friday.

And night after sleepless night, of course I began to think about ME/CFS. Yesterday, the exhaustion was so pervasive that I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength. I tried to blog yesterday but the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was a long day of running on total empty. And I thought often about those who are struggling with ME/CFS and it strengthened my commitment to be part of the conversation.

Blessedly, I slept for 5 hours last night. Even my active, mourning brain couldn’t keep my body from finally getting some REM rest. This morning I feel a little more energy and a great deal of Gratitude that ME/CFS is a nightmare from my past.

Wishing everyone the strength and opportunity to regain their health. 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

4 Comments

ME/CFS Perception – The Crazy Stigma

ME/CFS Optimism – Brighter Days

ME/CFS Support - Words of Appreciation

ME/CFS Gifts – Better Days

ME/CFS Feeling Empty – Sleep Depravation

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ME/CFS Perception – The Crazy Stigma

ME/CFS Optimism – Brighter Days

ME/CFS Support - Words of Appreciation

ME/CFS Gifts – Better Days

ME/CFS Feeling Empty – Sleep Depravation

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