Category: Strategies

ME/CFS Choices - The Holiday Bustle

12/10/2019

Before I was sick with ME/CFS, the holidays were a blur of activities in addition to the normal work and family commitments. A Healthy person struggled to get it all done.

Then I went through four holiday seasons struggling with ME/CFS. For two of them, I was bedridden for most of each day. As is often the norm for ME/CFS sufferers, I was pretty hard on myself. All I could think of were the special holiday things that my kids and family weren’t enjoying because of me. But I couldn’t do anything about it. So those holidays passed with me needlessly feeling down.

Then came a holiday season when I was feeling stronger – not fully well but better. And of course, true to form, I wanted to make up for the ‘lost holidays’. Lessons can be tough to learn. Gratefully, I had people around me and a voice in my own head that said, “Do only what you enjoy and can handle - let the rest go.”

Now that I am fully well, our holidays are still scaled down and we all like it that way. It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet. We don’t do every activity every year. We switch it out. Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc). We haven’t sent cards in years. I’m thinking I might send an e-card this year. Maybe…

How do you get through this season without straining your energy limits and pushing yourself into relapses? What do you happily forego from the holiday hustle and bustle list? 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

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ME/CFS Supplements – One Combination Doesn’t Fit All

5/14/2019

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I’ve started taking supplements to fill in some gaps in my nutrition and this got me thinking about common practice today in the use of supplements for ME/CFS treatment.

Most providers who see ME/CFS patients recommend a regimen of supplements. They can include pills, IV, shots and ‘cocktails’. Patients report a range of results with these methods from revitalizing to ‘maybe it helped.’ If you’re seeing a practitioner who has recommended such treatments, be sure that the ratios and combinations of supplements are based on your metabolism. There are tests and blood chemistries that can be run to get an accurate picture of you and your needs for treatment. Many of these treatments can be expensive and it can be a sacrifice to pay for them. If you’re not feeling measurable improvement, revisit your doses and combinations with your doctor.

From my own experience, the first doctor who actually treated me for ME/CFS, relied on his prior experience with ‘patients like me’ and prescribed a similar plan. Although this first step got me to a healthier plateau, it wasn’t until we figured out, through trial and error, what I specifically needed for supplements that I was able to get on the right road to recovery. Are you taking supplements as part of your recovery plan? What do you think of their efficacy? 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

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ME/CFS Holidays – Gift to Yourself

12/18/2018

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It’s seven days to go until December 25th and we’re in the midst of many religious and cultural holiday observances. Whatever you celebrate at this time of year, we’re getting to the thick of it and we’re feeling the constraints on time and energy to get it all done. When I was struggling with ME/CFS, this was a critical decision time that determined how my holidays would play out.

Would I choose wisely and slow the pace down so I could feel reasonably well at the height of the holidays or would I keep pushing to the finish line? In my early years of struggling with ME/CFS, it was always the latter. No matter what good intensions I held, invariably I over did and was crashing thru the culmination of our holiday celebrations. It wasn’t until I began to get a taste of feeling better that I understood the importance of stopping the rush of the holidays.

This holiday season, the most important gift you give is the one to yourself. The gift of letting go of most of the Fa La La and napping instead. Watch a favorite movie. Ask a friend to pick up a specific gift item or some groceries while they’re out doing their own shopping. Order online. Linger over a hot cup of afternoon tea. Call your loved ones and let them know that you’re thinking of them and that you’re resting so you’ll be up for the holiday events. The more you give yourself the gift of rest and reasonable pacing, you will actually be giving your family and friends the gift of a stronger and more participatory you during the holidays.

Are you giving yourself the gift of energy for the holidays? 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 my next posting after the New Year. And consider being part of the conversation.

Wishing you and your loved ones a Healthy and Blessed Holiday,

In the New Year, Be Well Again,
Martha

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ME/CFS Feeling Empty – Sleep Deprivation

10/30/2018

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I haven’t been sleeping well lately. There’s a lot going on and I’m caught up in too much brain activity. After several restless nights, of course I began to think about ME/CFS.

I remember when the exhaustion was so pervasive. 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 and the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two. It was long days of running on total empty.

It wasn’t until I understood the role that sleep deprivation was playing in my struggle with ME/CFS that I began to improve. We dissected everything about my nights in order to improve my sleep – Comfort, light, sound, timing and medication. We tweaked and tweaked. When we finally got it right, I was getting about 6 hours of solid, uninterrupted sleep every night.

So yesterday I tweaked a few things in my current sleep environment and I finally slept for 7 hours last night. Even my active brain couldn’t keep my body from finally getting some needed rest. This morning I felt a little more energy and gratitude for the hard earned lessons of my past.

What’s the status of your sleep patterns and environment? What needs tweaking? 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

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ME/CFS Gifts – Pace Yourself

10/16/2018

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I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me. Are we goal driven or just driven? Are we actually going anywhere? Do we arrive? Are we missing the whole point of the journey itself by never slowing down? When I was struggling with ME/CFS, I was forced to slow down. For a time, I was forced to completely stop.

It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down. Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message. Making choices and pacing have become part of my new way of being. I do smell the roses now.

If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.” John De Paola

It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle. The cat steps off to the side and just watches the dog who continues to run around the circle. I can remember the road runner doing this to wile e coyote too.

Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it. Open it up and appreciate the message. How are you pacing? What are your strategies? 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

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ME/CFS Reality – Commit to Being A Patient

10/2/2018

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I recently received an e-mail from a someone who has been struggling with ME/CFS for several years. Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high-priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning. Square One. SO Frustrating. And SUCH a familiar story. So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness. And only making small inroads. Glimmers of hope that eventually fade. And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat. I literally spent a year in bed on a fixed schedule no matter how I was feeling. I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems. This was in many ways torture for a type A like me. But I stuck to the plan because everything else had failed. I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick. To be a patient. To commit to giving up functioning for a while in order to get a normal life back down the road. And I think I needed to waste all the other time on those other paths. It drove home the point that I wasn't getting anywhere going at this half heartedly. Those were wasted years anyway so what was one more year if it paid off? I know that this is not an option for many people because of responsibilities. But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.

How do you deal with the struggle between getting well again and also having a life? 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

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ME/CFS Change – New Beginnings

9/4/2018

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Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend and the sighting of a morning school bus bring on the feel of the changing season. Although some of us would enjoy an extra week or two of August weather, it’s time. And nature reinforces that with the cooler nights and comfortable daytime temps. When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed. I was still caught up in the desperate search to find someone who could cure me.

Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach. A change - A new beginning. I had been doing the same things over and over again and expecting a different outcome – as we all know, that’s the definition of insanity. And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.

Many of us find change to be outside of our comfort zones. But change is the way forward for many of life’s challenges. ME/CFS is no exception. It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health. Soap box – Are you keeping a daily journal?

What change will you bring to your approach to 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!

I will be off the grid for the next several weeks. I’m looking forward to the time I’ll be spending away from the distractions of technology however much I love its’ gift of connectedness. Look for my next posting on Tuesday, October 2nd and consider being part of the conversation.

Be Well Again,
Martha

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ME/CFS Brain Fog – Write it Down

8/21/2018

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One morning recently, I woke up to thick fog blanketing the yard. It was so dense that it reminded me of a night last spring when I was driving home and the lingering snow on the ground was a few inches thick. With temperatures in the mid 30s, there was a wall of thick fog hanging over the snow and drifting across the roads. In high school science class I learned that sublimation is the transformation of physical matter directly from a solid to a gas without ever becoming a liquid. So the night fog was the result of the frozen snow skipping over water and going straight to cloud vapor. And it reminded me of the frustrating brain fog I had when I was struggling with ME/CFS.

Kind of like the snow, my brain seemed to skip over the natural fluidity of conversations - the ebb and flow of ideas exchanged with another. Or the transitional thoughts needed to get from a concern to a possible course of action. Concrete thoughts wouldn’t develop and instead slowly leaked out of my head like a balloon with a pin hole. I couldn’t remember what someone said a moment after they said it. It seemed to dissipate into the air without ever registering in my brain.

After denying the reality of my memory struggles for awhile, I finally came around and tried to cope with it. I started to write things down as I spoke with people and it helped me to keep the train of thought going. And when I was trying to think through something on my own, I also wrote it down. It felt stupid at first, but when it began it help, I appreciated the sense of accomplishment that resulted.

How are you coping with brain fog? What strategies have you developed? 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

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ME/CFS Treatment – Working with a Provider

6/12/2018

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By the time most of us received our ME/CFS diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy. Batteries of tests later, we still had no answers. So, we were labeled with ME/CFS/Fibro or whatever it’s called in your region. For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.

We are struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep. From this place of low functioning, if at all, we have no answers and no solid treatment plan. And I don’t consider ‘rest and you’ll feel better’ a treatment plan.

What to do? I flailed around for quite awhile before I started keeping a daily record. But once I started, I began to have specifics that I could document and discuss with my provider. Instead of looking for him/her to provide me with answers to my illness, I provided solid data about my patterns and symptoms. Full disclosure, he never seemed to care much about my energy patterns. But he liked seeing symptoms that he could directly treat. And he loved getting feedback via follow up data to determine if the treatment had any effect. So, I learned to work with him as a partner. It was a completely different relationship than I was used to but it worked for ME/CFS.

Do you have a provider that you’re working with? How do you successfully partner with him/her? 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

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ME/CFS Pacing – We Totally Get It

6/5/2018

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No matter where you live, you may be aware that New England has been dealing with a conga line of cold, rainy weekends since April. It has been a record breaking couple of months. Even the most ‘rain loving’ people around me have had it. And of course, all of this got me thinking about my struggle with ME/CFS.

Like many, the depths of my illness dragged on for about four years. And like many more, it still drags on. We know what it takes to be in something for the long haul. To commit to getting better as a lifestyle however limited. And yes, some of us needed multiple remedial roller coaster rides of push crash cycles – I’m at the front of that line. But we totally get the patience and pacing it takes to reach a goal – for us wellness. And we keep at it, day after day, week after week, month after month and year after year. We are determined to be well again.

This understanding doesn’t entitle me to look down my nose at those around me who are done with the cold and the rain. But honestly, I do a little – just a smidge. Yes, I’m tired of it too but I am not complaining. This is a piece of cake – made of rain - compared to struggling with ME/CFS.

Whenever someone groans about the weather, I listen for a while then smile and say, “Keep Calm and Umbrellas Up”. Please COMMENT 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

<<Previous

ME/CFS Choices - The Holiday Bustle

ME/CFS Supplements – One Combination Doesn’t Fit All

ME/CFS Holidays – Gift to Yourself

ME/CFS Feeling Empty – Sleep Deprivation

ME/CFS Gifts – Pace Yourself

ME/CFS Reality – Commit to Being A Patient

ME/CFS Change – New Beginnings

ME/CFS Brain Fog – Write it Down

ME/CFS Treatment – Working with a Provider

ME/CFS Pacing – We Totally Get It

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