CFS Blog - ...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it

ME/CFS Humor – Sometimes It Helps

1/22/2019

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 MS 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. 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

ME/CFS Emotional Baggage – Dump It

1/15/2019

I’ve been helping someone clear out a family home which is full of memories – a mixture of good and bad. But mostly the house is weighed down with so much emotion that it feels like the structure itself sags under the burden. Of course, I started to think about my struggle with ME/CFS and the crushing assortment of emotions that I wrestled with.

In the beginning, I was consumed with frustration that I had no answers and anger that I was so quickly dismissed as ‘just depressed’. Then as I fell into the ME/CFS trap of push/crash cycles I developed self-blame. And as the months then years dragged on with no improvement, I felt guilty about the drain I had become on my family and the lost time that I had stolen from them and from me. Then I added in a good dose of shame. Eventually I had created a toxic soup of emotions which I was drowning in.

Pile all the worry on top of that and I was definitely going under. Talk about emotional baggage! Could I have been any better at bringing myself down? A surgeon couldn’t have succeeded in removing my self-esteem and self-image more precisely. And what about all the energy I drained from my limited reserves just festering over this mountain of emotional baggage?

After I spent a couple of years letting these emotions keep me under, I finally came to the understanding that I was only making my struggle with ME/CFS even harder. It took a great deal of determination to dump the emotional baggage. But once I started to off load, it felt great. I became intentional about my emotions and I packed lightly. How are you dealing with your emotional baggage? 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

ME/CFS Attitude – Find Thankfulness

11/20/2018

When I sat down to blog about Thanksgiving, I looked at what I had written last year. I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time. So here it is again:

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.

Are you finding things to be thankful for? 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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
Be Well Again,
Martha

ME/CFS Lost Opportunities? – Just Postponed

8/28/2018

A few summers ago, I spent a weekend with my niece and her young family at the lake. My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh. The difference is that I could play with her, dance with her and even pick her up. When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby. I missed my daughters’ time as a baby and toddler. Even when she was three, I was still unable to pick her up or do active play with her.

Did I miss out on an experience that I can never get back? One could look at it that way. And of course, I can’t get it back with my daughter. But spending time with my grandniece was such a wonderful gift. It was like recovering that lost experience. And my daughter was there too. She had just turned twenty-two. It was a joy to see her holding her cousin on her hip and playing with her.

If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS. It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood. I did find ways to enjoy her and be her Mom but they needed to be energetically limited. And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones. So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

Are you balancing choices that might be missed opportunities? Are you planning ways to recover them later? 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

ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!” What most aim for is normalcy. The ability to be the person they were before ME/CFS. They want their family life, social life, work life and healthy life back. They want to live again. They don’t want restrictions and pacing. They want the whole ME/CFS nightmare to go away. And I was no different. I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them. It was brutal physically, mentally and emotionally. Honestly, as my daughter would say, I was a hot mess. The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step. Not even two or three or ten. And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure. If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal? Are you ready to get off the crash and relapse roller coaster? For whatever reasons, some of us need to ride it longer than others. When you’ve had enough, reassess your goal and correct your aim. I finally realized that I needed to get to a pace where I could handle things and not get sicker. A pace plateau. Something I could sustain for weeks and not crash. Then I would try a little bit more. I if could handle it, I stuck with it for a long time to ensure that I didn’t get sick. And so on. If I couldn’t handle it, I quickly dropped back a step and settled in for a while. Did I like this snail’s pace? Of course not! I hated it! But I finally got my life back. So where is your aim these days? 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

ME/CFS Pacing – We Totally Get It

6/5/2018

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

ME/CFS Guest Blog – Dale Miller’s list of Health Ideas

5/1/2018

Dale Miller recently sent me his list and I wanted to share it. It’s long so I’ve selected twenty to start. Pace yourself LOL.
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I have been reading your blog for at least a couple of years. You always have a good thought in there that is valuable in helping me run my life. I’ve been dealing with these issues for over 15 years. At different times, I have been in the pit of despair at ever being able to do anything, and at other times, ringing with ecstatic joy at being reborn into a full rich exciting life. It has taken me a long time, but most days, I have learned to savor each day or hour that I am able to function and show up for my life.

Overtime, for me, I have learned that maintaining optimum health is a long haul operation. My view is that watching out for and caring for my body just came at an earlier time in my life than it does for most people. Everyone, if they want to operate at their peak has to be careful to eat the right foods, watch over their mental processes. get the right health care, proper rest, good companions, love and care. We all need/want these things, not just people with a chronic health condition.

Take care, Dale

HEALTH IDEAS
April 19, 2018

Positive/negative affirmations. Whenever you say, “I’m tired. I’m old.” These are negative affirmations. You may not believe in affirmations, nevertheless you may be doing negative affirmations every day!
Develop a tiny interest, something to think about every day.
Keep the mind off sickness, push the mind over to the interest.
Audible books for distraction. Try happy tv or radio.
Music always playing in the house.
Dance it out.
Sing, doesn’t matter if you have a lousy voice, raises the endorphins.
Find someone or animal to touch.
Small exercise daily, even if only visualizing.
Starfish 10x a day. A starfish is when you raise your arms as high as possible over your head, inhale deeply, then bring your arms down and exhale.
Understand completely the connection between illness and depression. If you are long-term ill, you are probably depressed. Suggest Jonathan Harr’s book, Missed Connections for what to do about it.
Constantly be looking for something to feel good about. Roses, flowers, puppies, kittens, dogs.
Find all the parts of your body which are working. Chances are, 97%+ is working, notice that and catalogue if you need to. Focus on what part of the body is working and functioning, not on what is not.
Slow down, taste everything, smell everything, hear everything.
Correct your posture constantly. A slump posture makes you feel bad and breathe shallowly.
Negativity bias. This is a bias that all humans have which is a survival skill. It’s very valuable if there is a saber tiger in your immediate vicinity. Otherwise, you are trained to always seek the negative. This is not helpful if you are trying to recover from a chronic illness.
Control your input, you may have to lose negative friends and family.
Forgive everyone who has ever wronged you in this life-including yourself.
Read inspiring material every day.
Find someone or something to love unconditionally, hopefully yourself.

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Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha

ME/CFS Gifts – Better Days

4/24/2018

I live in New England where this winter has been weird – warm when it’s supposed to be cold then cold when we expect it to be warm. I’ve had mixed feelings about it. I love the coziness of a cold winter - but not the hassle of storms and hazardous travel. I think most of us are done and ready for spring.

This week we’ve finally had some sunny warm days that reached above 60. I went for a walk and felt all the usual stirrings of spring. Of course, I knew that it wasn’t here to stay but the taste of it was enticing. I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day. It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it. It was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.

Several times I was suckered in by the gift. But after a few bad turns I got it. By comparison it put so much in perspective. So this is what it feels like to be better and feeling strong! So just as I know that the 60 degree day is only a reminder of the spring to come, back then I had to avoid the pitfall of a wonderful gift of a better ME/CFS day. Revel in its potential to be repeated more often and stay the course of pacing.

How have you reacted to these gifted days? 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

ME/CFS Attitude – What Others Say

4/17/2018

When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check. It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others. One group says ‘you look OK to me’. Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak. And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend. It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.

Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can. And even these caring people can say the most insensitive things at times. When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

What do you say when people make insensitive comments? Do you react at all? 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

ME/CFS Optimism – Brighter Days

4/3/2018

It happens to me every year around the end of March. 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 had 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 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. 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