 © 2012 NBC Over the years I’ve been able to develop a thick skin when it comes to hurtful comments from others about my struggle with ME/CFS. Dismissiveness or even subtle innuendoes suggesting that my illness was a mental health problem are a reality and I’ve come to deal with them as part of the package of ME/CFS. But recently, someone whom I thought ‘got it’, belittled my illness with a wave of her hand referring to it as a brief bout with severe depression so just get over it. REALLY!?!
I’ve now got Seth and Amy of SNL zinging their Weekend Update one liners across the video of my mind. Saying that ME/CFS sufferers are only severely depressed is like saying that ulcers can be cured by thinking pretty thoughts. REALLY!?! If ME/CFS patients are mental health cases then Aids is a lifestyle choice. REALLY!?! If you think that Prozac is the cure for ME/CFS, then I’ve got a bottle of snake oil that will cure your condescending attitude. REALLY!?!
Sometimes humor is the best medicine. How do you use 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
 © 2012 TSM We have been experiencing a drought in New England since the first of the year. The normal Spring rains which enable the flowering of bulbs and perennials have been absent. Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with much needed water. As the front got closer, things shifted to warnings about flooding and washouts. And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.
As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly. The cruelty of ME/CFS only served to amplify the intensity of these highs and lows. My first year was full of frustration with the medical community that labeled me as a head case. With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy. After a period of permitting that negativity to cling to me, I finally rejected it. But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water. After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.
This Focus helped me to eventually steer away from emotional lows. How do you manage this aspect of the cruelty of ME/CFS? How do you shore yourself up? 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
 © 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.
 © 2012 TSM OK, if you haven’t already guessed, I’m an optimist. And yes, our type can get on peoples nerves when we’re too upbeat. Not to say that optimists don’t have their down times. I’ve had many. Some of those darkest times for me were when I was bedridden with ME/CFS. A disease as cruel as ME/CFS plays games with your mind, your psyche and your emotions. The worst of it for me was that I became someone whom I didn’t recognize. It began to erode my sense of self and my self esteem as well as my physical health.
What I took away from that dark place was the knowledge that this sick ME/CFS person was not the full definition of who I was and who I intended to be again. It became a tool – a negative model of what I rejected. I used it as a springboard from which to move upward again. It renewed my commitment to regain my health – one small step at a time. And each step was a little further away from those lowest points.
Did I do this after my first serious depression? Of course not! Type A personalities are quite certain of their methods and need to be clubbed a bit before they admit to being wrong. But after a few low episodes, the optimist blessedly took control and I finally began the slow yet steady ascent back to health.
How to you handle lows? Can you call on your optimist to move you upward again? 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
 © 2012 TSM I’ve recently had a series of emotionally challenging events in my life. It’s resulted in hesitancy about what’s coming next – an apprehension about the future which I know will at some point entail more of the same kind of challenges. And of course it renewed the feelings that used to affect me when I was struggling with ME/CFS.
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me. My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day. Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day. It took a great deal of intentional focus to see the positive side of how I was physically feeling. And to ignore the anxious voice inside of me.
The strategy that finally worked for me was planning ahead. During the time I was bedridden, I would plan by the hour. What should I be doing during the next few hours to achieve a good outcome? As I got healthier, I planned by the day. What should my day look like in order to stick to the protocol and have a successful day? Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result. It seems simple but it worked.
How do you let go of the apprehension? What are your strategies? 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
 © 2012 TSM When I was at my lowest point suffering with ME/CFS, it seemed like I had only one identity – a bedridden sick person. As I slowly began to regain some functioning, I would have brief periods of experiencing a different identity – a normal healthy person. This happened when I had a conversation about something I was passionate about and I could keep focused for ten minutes or maybe even half an hour. During that time, I forgot about ME/CFS. I stepped out of that label and, for a while, became free of it. Then, of course, it would end and I would ‘remember’ my situation.
As I grew healthier, I got to the point where half the time, I could actually participate in some normal healthy person activities and relish for a while in forgetting about ME/CFS and its cruelty. But it would end and I would have to ‘remember’ again. Straddling both worlds of sick and healthy was not only a physical challenge in terms of pacing, pacing and more pacing. It was a mental marathon ‘double life’ of moving back and forth between these two identities. Of learning to appreciate and revel in the times of acting and feeling like a healthy person and then handling the let down of remembering the reality of my situation. I worked hard at not letting the upside create an even lower downside. I kept my eyes focused on shifting the percentages – slowly and steadily – to more and more normal health person and less and less sick person.
How do you handle the Double Life of sick and healthy? What are your strategies? 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
 © 2012 TSM 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
 © 2012 TSM 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
 © 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
 © 2011 TSM With all that we know about ME/CFS being a wastebasket diagnosis, I am frequently caught off guard when someone, who doesn’t even know me, declares that I didn’t have CFS. Could anyone be a member of our community and not know that we are a collection of patients suffering from any one of several diseases clumped together? These ‘experts’ diagnose me from afar. Without so much as a lab result, they decide that I have ‘pick-your-favorite’ disease. Many of these diseases are ones that I was either tested for or followed treatments which would have improved my condition if they had been the problem.
The vast majority of ME/CFS sufferers that I meet have been tested for everything and have pursued every treatment that they’ve heard of – even the ‘wacky’ ones. I tend to attribute this to my observation that most of these same patients were full blow type A personalities when ME/CFS knocked them down. I was one. And what do we do when we get blown off track? We roll up our sleeves and throw our full blown type A personalities right back at it. Of course, that blew up in my face and my experience is not unique but more on that in a future blog.
So who are these ‘experts’ who need to dismiss others in our community as ‘imposters’? What is their agenda? What do you do to deflect this kind of negativity? 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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