© 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
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
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
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
© 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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