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ME/CFS Diagnosis – Keep Evaluating

2/25/2014

By definition. Everyone who has ever been given the diagnosis of ME/CFS knows what they don’t have. It’s a long list of known diseases that have diagnostic tests and treatment plans. Being given the diagnosis of ME/CFS means that your healthcare provider has run out of ideas. They’re stumped. And depending on how well they know you or how sick you present at your appointments, they aren’t sure whether or not to refer you to a mental healthcare provider.  Based on the conversations I’ve had with physicians, they generally don’t like to give the diagnosis of ME/CFS.  They would much rather figure out what’s going on with you and have a concrete treatment plan with a positive
prognosis.

Some providers are good at partnering with ME/CFS patients to design a treatment plan, others not so good. But whether or not you have a working relationship with your provider, you are the one who will manage your ME/CFS on a daily basis. You are the one who will keep a daily health log – no groaning please.  You are the one who will observe your patterns.  You are the one who will need to be a lab rat. You are the one who will oversee your personal case study of one.

To be successful, you need to keep evaluating.  ME/CFS is your diagnosis.  OK – accept it. You’re in a waste basket diagnosis that includes many possible diseases which currently are unknown. So which one do you have? What’s your version of ME/CFS? As you begin to treat the most severe symptoms, you will start to see clearer patterns.  Some symptoms will fade and lesser ones will become more noticeable. Clues will appear.  Pay attention and keep evaluating.  Are you monitoring your patterns?  Are you beginning to understand your version of ME/CFS?  Please COMMENT on this blog or Send in your thoughts and I’ll post
them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

4 Comments

ME/CFS Repetition – Keep Your Sanity

2/18/2014

3 Comments

This winter in New England has seen a lot of snow.  It hasn’t been two or three big storms. It’s been a long conga line of smaller storms coming every few days. Day after day and week after week. And it’s only February. Lots of
shoveling, digging out cars and slippery driving.  And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path. Whenever I looked forward, the repetition seemed to spread out endlessly before me.  Like this long winter, it didn’t seem like it would ever end.  I had to find the courage to settle in. I needed to take it a day at a time. I needed to stick with the recovery plan and work it every day. Honestly, I couldn’t think about how slow the pace was because it drove me crazy. Much like this winter, I don’t think about how much more snow I will shovel. I take it flake by flake.
Right now, there’s a gorgeous sparkly snow globe swirling outside my windows.

My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress.  I was slowly making my way back to full health.  And the proof was right there written in black and white.  It was a balm for my sanity.
Are you on the slow, repetitious path that the protocol requires? What helps you stay sane?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

3 Comments

ME/CFS Irony – Mind Over Matter

2/11/2014

4 Comments

I did a lot of surfing and exploring of the definition of irony before I would even consider using the word.  As many have experienced, there is a current culture of ‘looking down one’s nose’ at the ignorant use of the term irony - Alanis Morissette a prime example of being taken to task by many.  I have decided that I’ll risk it.  Please feel free to chide me if your take is different.

Here’s my perspective. We live in a culture where people are
recognized, honored and even championed when they ignore the physical signals of their bodies and push themselves to the brink of their capacity - to a breaking point in the pursuit of some objective.  It’s lauded as the ultimate achievement of Mind Over Matter. We see this most dramatically in athletic competitions – the Olympics are prominent right now - but it also has a formidable presence in the work place, at home and even in personal leisure pursuits. Ultimately, we are held up to the ‘You Can Do It All’ standard. And in a lot of situations, we manage to get away with it for a while.

Then ME/CFS takes up residence.  I don’t think that it’s a coincidence that many ME/CFS sufferers would label themselves as Type A personalities prior to ME/CFS.  And so when we are challenged with something that threatens us to the core of our physical capacity, what’s the instinctual ‘go to’ solution? Yes – Push Through It.  Mind Over Matter. And we are shaken when this not only doesn’t work but it makes ME/CFS worse. Not to mention the opinions expressed by others who observe and conclude that we’re soft, undisciplined, burnt out or just depressed.

So here’s the Dramatic or Tragic Irony.  The solution to personal challenges that has been engrained in us since childhood – Mind Over Matter – is the complete reverse of what is required to get control over ME/CFS and to ultimately recover.  And it is delivered, wrapped in an ugly package of judgment that we’re weak and in some way inferior. Did I get it right? Please COMMENT
on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

4 Comments

ME/CFS Self-Care – We Need Better Grades

2/4/2014

2 Comments

I missed posting a blog last week because I’ve been struggling
with a prolonged bout with the flu. I’m finally starting to feel better and today I’ll begin to get back on track. But I’m taking it slow – a life lesson I’ve learned from my own protocol. And of course I did a lot of thinking about ME/CFS while I was sick. It
was easy to taste once again the cruelty of that nightmare as I struggled with a flu that wouldn’t let go of me.

So I’ve thought about self-care and the poor quality of it in my
life. I seem to be marginally taking care of myself. Honestly,
a health coach would give me a grade of C minus. I know better and yet I’m not doing the right things. I don’t know if it’s
human nature or nurture, but as long as we can get away with not caring for ourselves, we don’t. Then something happens. When our health is threatened, we pay attention.

Fresh off a prolonged bout with the flu, I’m paying attention. And at least right now, I plan to stay on top of it. I deserve better self-care than I’ve been getting from myself. How well have you been taking care of yourself? What’s your self-care grade? Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. You can use the Contact Form or send an email to Martha at DefeatCFS dot net. And Guest Blogs are most welcome!

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

Be Well Again,

Martha

2 Comments

ME/CFS Diagnosis – Keep Evaluating

ME/CFS Repetition – Keep Your Sanity

ME/CFS Irony – Mind Over Matter

ME/CFS Self-Care – We Need Better Grades

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ME/CFS Diagnosis – Keep Evaluating

ME/CFS Repetition – Keep Your Sanity

ME/CFS Irony – Mind Over Matter

ME/CFS Self-Care – We Need Better Grades

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