Category: Strategies

ME/CFS Stop – When we had other plans

3/27/2018

Recently we were driving along with a schedule for the day. Then bang. We had a tire blow out. We were able to safely get to the side of road but that one event shot holes in the plan for the day. As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden. And after going through the seemingly endless screening process, I was diagnosed with ME/CFS. Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in. Then we realized that the jack crank was missing. Great – that meant that we had to raise up the car one half turn at a time. As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work. And getting well was agonizingly slow. And repetitive. And repetitive. And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools. And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools. What tools are you inventing? What tools are you learning from others? 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 Recovery – Take Control

2/27/2018

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Have you had the experience of being introduced to a new perspective or way of looking at something and then suddenly you see it everywhere? Is it something new that’s popping up everywhere or had it been there all the time? Is it you who has changed by being aware or more open? From my own experience, I think it’s me. And when I truly grasp a new perspective, it seems to apply to everything.

My latest perspective is about control versus out of control. So much of our lives are controlled from somewhere else. But there is much that we can control. Not everything and not all of a certain thing, but there is much that we can tweak, reinforce and push for. Lately I’ve heard many people express to me and wring their hands about how things are happening in their lives. And they take the perspective that they are at the mercy of whatever it is. And as I hear this, my mind is saying take control. Make some intentional changes and be proactive. And of course it’s gotten me thinking about my struggle with ME/CFS.

At first, I turned over control of my illness to my doctors. But after much wasted time and energy, I finally admitted to myself that not only did they not have the answers, they ultimately just didn’t get it. A few were compassionate but that just felt good. It didn’t get me well. Finally I started to carve out pieces that I could control. I was sick of being sick and I was sick of getting nowhere. So, even though I wasn’t convinced that I really could change my SEID/CFS illness, I was so ticked off about having no answers to this cruel disease that I just started recording and tweaking. Recording and tweaking. Recording and tweaking ad nauseum.

So I just took action. I didn’t know what I was doing. But I was doing and it felt good. Would I get anywhere? I didn’t know but it felt better exerting some control. Eventually it became my path back to wellness but I didn’t know that when I started. I just needed to take some control. And it was good for my mental health. Are you taking some control of 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 my next posting on Tuesday, March 13th. And consider being part of the conversation.
Be Well Again,
Martha

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ME/CFS Plan – Only Keep Your Successful Strategies

1/16/2018

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I learned a new card game over the weekend with a specific deck that contained resource, action and reward cards. The premise of the game was to start with a few cards and then slowly, through the gameplay, build a personal deck of select cards that you thought would be successful in winning the game. On every turn you had to make choices about what to keep, what to acquire and what to aim for. After playing three hands, of course I began to think about ME/CFS and how I had used a similar plan to get well.

After struggling for almost two years, only getting worse, I finally decided that I needed a better plan than my daily ‘how do I feel today?’ approach with the hope that by some miracle I would walk away fully recovered. FYI – I’ve never heard of this actually working for a ME/CFS patient. I decided that I needed a real plan. One made up of a handful of strategies that had actually improved some aspect of my illness. Over time I collected a record keeping strategy, a sleep strategy, a rest schedule strategy, a provider strategy, a nutrition strategy, a supplement strategy and a network for help strategy. Each strategy alone wasn’t going to get me well by itself but as a complementary set of strategies I was able to not only make measureable progress but eventually return to full health.

In essence, I built a personal deck of strategies which I played each day much like the new card game I had learned albeit the stakes were much higher. What strategies have worked for you and are in your personal ME/CFS plan deck? What strategies have you discarded? 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 – The Gift of Helping

12/5/2017

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Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted. Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds. When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health. And of course they couldn’t give me that.

At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery. With hindsight, now I can think of many that would have been much appreciated. In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate. I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.

Imagine all the helpful things that people could do for you as you struggle with ME/CFS. Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind. What would you value in a personal gift certificate? What do you wish was in your helping gift? Tell us and then tell those who want to help. 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 – Keeping the Beat

11/14/2017

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I was recently playing drums with a small group of drummers and what started with a base rhythm devolved into a less than pleasant cacophony of noise. If you’ve ever sat in on a drum circle, you know exactly what I mean. To solve this problem, the leader needs to lay down a basic simple beat and hold it. It gives everyone a point of reference to play off of and to return to and it keeps the group cohesive. Experienced drummers already know this and learners usually pick it up when the leader points it out. When you’re struggling with ME/CFS, there’s no leader to set the basic beat.

When a large mother drum is present, several people sit around it and hold down a beat – sometimes it’s a heartbeat. It sounds like an actual heart beating – boom, boom, pause. Boom, boom, pause. Just like the line you’d see scrolling across the screen of a cardiac monitor. Two peaks followed by a flatter line. It’s all about the underlying rhythm - the natural pacemaker.

Unfortunately for ME/CFS patients, it’s a challenge to keep the basic beat – the pace that will consistently get us from day to day without being caught up in a push/crash cycle. It’s a matter of fine tuning. Collect data, make observations, find successful patterns – Repeat. Repeat, Repeat, Pause. Repeat, Repeat, Pause. And eventually Repeat your way back to health.

How do you pace to a basic beat? 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 Goals – Attitude, Attitude, Attitude

10/3/2017

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A while back, a friend recommended that I read Amy Chua’s Battle Hymn of the Tiger Mother. Shortly after, an item on the internet about the book caught my eye. There appeared to be some controversy about the book – a true story. Strong opinions were voiced for and against the mom (author of the book). Now this definitely had my attention. I decided to pick up a copy.

I’d only read forty or so pages and I understood why people took issue with the mothers parenting style. She was driven to have her children excel at school and music to the exclusion of everything else. She was relentless about studies and practicing. A therapist would probably label her as obsessive. Many readers thought she was cruel.

If I had never had ME/CFS, I might have been in the cruel camp. And I definitely question such extreme rigidity with children. But honestly, I understood the mother and her motivation. She set a goal for her children that she was determined to reach. OK, it wasn’t her own goal and she seemed to act like a bully at times. But what I identified with was the determination, the attitude to stick with the plan always keeping the goal in mind. Not being derailed by everyday distractions. For her, if it didn’t fit into the long term plan, it was not allowed.

After two years of riding the cruel ME/CFS rollercoaster, I finally decided that what I had been doing wasn’t working. I needed a new approach. From that day forward, I was like the tiger mother. I was highly motivated to get my health back. I was determined, focused and had the capacity for regimentation. If it wasn’t part of the plan, it was out. No more crappy food. No more activities that sent me into relapses. No more cheating on sleep and rest. No more isolation – I asked for help. No more fuzzy recall – I kept records. No more fretting about what other people thought of me – I accepted my situation and didn’t beat myself up about it. I focused on the goal of getting my health back.

So if you’re suffering with ME/CFS, what is your goal? What are you doing to reach it? Are you consistent and steadfast? Are you a tiger about getting well again? 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

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ME/CFS Change – New Beginnings

9/5/2017

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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 – I believe 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.

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!

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

Be Well Again,
Martha

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ME/CFS/SEID Nutrition – Eat Healthy

7/25/2017

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Ever since we were kids, we’ve been told by nutritionists to eat healthy food. The various pyramids and food groups have come and gone but the message has been the same. And there’s really no mystery to it. Eat healthy food. When I was struggling with ME/CFS/SEID, I paid attention to everything I ate once I understood the need to feed my recovering dis-eased body.

Our biggest road block to following this simple adage is discipline. In our consumer driven economy, there’s a mega agricultural and food business that wants us to consume a lot of unhealthy cheap stuff that’s profitable. And they have the market control to make it easy for us to acquire and eat their stuff and harder to get something different. So the first challenge is to PLAN to eat healthy food. This may sound simplistic but if I’m hungry and there isn’t anything healthy to eat, I go for the shelf with the packaged food. And sometimes, even when I have healthy food in the house, I don’t feel like preparing it. Make a salad? Sometimes I’m just too tired. So as simple as it sounds to eat healthy food, we have to work at it. And when you’re struggling with ME/CFS/SEID, every ounce of energy is precious. So you need to decide to allocate some of your limited supply of energy toward providing your body with the healthy food it needs to generate even more energy. Once you look at it that way, it’s a cliché of win-win.

So what’s healthy food? This is a personal decision in terms of what you know to be true about your metabolism. In today’s culture, many people eat organic or close to it. Some are vegetarian or vegan. Some observe various restrictions in their diets that have made a huge difference in their health – gluten free, sugar free, etc. Whether you need can be a matter of experimentation or testing. But whatever you do, as you work your way back to health, be sure to only put positive, healthy food into your system. Don’t eat negative food – like soda and copious sweets - that your body will have to spend precious energy clearing and processing. Plan to eat healthy food. What are your strategies for eating healthy? What works for you? 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/SEID Pacing – Protect Part of Your Day

6/13/2017

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When you’re struggling to recover from ME/CFS/SEID, pacing is one of the most difficult challenges. It’s too easy to get caught up in the flow of the day and lose control of what you had intended. We quickly can become victim to over doing and triggering a relapse. It can be absolutely maddening. We know what we need to do and not do. We have planned out the day. It’s in alignment with the protocol we’re following and we know if we follow the plan then we will have a successful, positive day.

Then the unpredictable, real world seems to take over. By the late afternoon we’ve either blown the plan to bits or we’re barely on track just hanging on. And we seem to do this way too often. OK, we’re human and we can forgive our weaknesses. But ME/CFS/SEID is not forgiving. ME/CFS/SEID is opportunistic and just waiting for an opening to assert itself like an energy gremlin. So what to do?

One of the strategies I used was to plan my day with built in breaks. I would sandwich them around the most demanding part of the day and sometimes also right in the middle if need be. I would have ‘optional’ parts of the day that I could opt out of depending on my energy levels and what else was still required of me. Essentially, I planned for the unpredictable. I gave myself space in the day to rest and to do whatever self-care I needed.

How are you pacing for the unpredictable? What part of your day do you protect? 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/SEID Distractions – Stay on Plan

5/30/2017

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I had a plan for the last two weeks but it didn’t play out the way I’d envisioned. Honestly, I can’t remember how things got so off track. Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play. I was truly over ambitious. Of course this reminded me of when I was struggling with ME/CFS/SEID and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash. I had no consistent plan for managing my illness. Each day was a question mark. How was I going to do today? How would I feel? And this lack of planning only made me feel worse. Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again. I needed to ignore the distractions and focus on saving my energy and using it with discretion. I needed to stay with the plan.

So the warmer weather is fast approaching. The summer will be filled with activities. It will be a time that pushes our wellness plans to the limit. What are your strategies for staying on plan? 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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<<Previous

ME/CFS Stop – When we had other plans

ME/CFS Recovery – Take Control

ME/CFS Plan – Only Keep Your Successful Strategies

ME/CFS Holidays – The Gift of Helping

ME/CFS Pacing – Keeping the Beat

ME/CFS Goals – Attitude, Attitude, Attitude

ME/CFS Change – New Beginnings

ME/CFS/SEID Nutrition – Eat Healthy

ME/CFS/SEID Pacing – Protect Part of Your Day

ME/CFS/SEID Distractions – Stay on Plan

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