Blog Archives

Supplements – Wading In

10/25/2011

Of all the considerations that ME/CFS patients need to address, supplements seem to be the most complicated simply due to the vast amount of information – a lot of which is conflicting. And the fact that supplements are also viewed by many to potentially hold the key to the magic cure, if it exists. Then add to that the complementarity puzzle where one tries to find the combinations and ratios which work – this offers endless possibilities. Finally, when cost is considered, it can be financially crippling to pay for some of these recommended supplement treatments – especially the medically administered ones. It’s a challenge to navigate for anyone let alone a patient suffering from brain fog.

Since I was sick, it seems that more and more companies are successfully marketing supplements and profiting. Many of these have convincing representatives who are either former patients or simply great salespeople. How does one vet all of this? How do you successfully sift thru all the information and make educated decisions about what to take, how and when? For me, it was a daily dose of the ‘knowns’ with a few doses of ‘it can’t kill me’ vitamins and minerals that were the ‘silver bullets’ of my era.

What supplement regimen have you settled into? What have you tried and rejected? What helped with your energy levels? Have you tried a medically administered ‘cocktail’ and was it helpful? 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

6 Comments

Diagnosis - Back Off Please

10/18/2011

2 Comments

With all that we know about ME/CFS being a wastebasket diagnosis, I am frequently caught off guard when someone, who doesn’t even know me, declares that I didn’t have CFS. Could anyone be a member of our community and not know that we are a collection of patients suffering from any one of several diseases clumped together? These ‘experts’ diagnose me from afar. Without so much as a lab result, they decide that I have ‘pick-your-favorite’ disease. Many of these diseases are ones that I was either tested for or followed treatments which would have improved my condition if they had been the problem.

The vast majority of ME/CFS sufferers that I meet have been tested for everything and have pursued every treatment that they’ve heard of – even the ‘wacky’ ones. I tend to attribute this to my observation that most of these same patients were full blow type A personalities when ME/CFS knocked them down. I was one. And what do we do when we get blown off track? We roll up our sleeves and throw our full blown type A personalities right back at it. Of course, that blew up in my face and my experience is not unique but more on that in a future blog.

So who are these ‘experts’ who need to dismiss others in our community as ‘imposters’? What is their agenda? What do you do to deflect this kind of negativity? 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

2 Comments

Attitude – Stilling the Voices

10/11/2011

2 Comments

Everyday ME/CFS sufferers deal with choices. The ‘energy envelope’ as it’s referred to nowadays. The emphasis is placed on how much energy you have, what MUST you handle today and what can you postpone or just let go of altogether. This approach refers almost exclusively to physical energy expenditure.

When I was sick, physical energy conservation was a primary concern for me. But I came to realize over time that emotional and psychological energy were even more important. Doesn’t make sense? Here’s how it would go for me.

During the times when I was ‘resting’ and making well balanced decisions about my physical energy, my mind was still active. Almost racing along despite the brain fog, I kept sifting through things mentally like a Virginia Woolf stream of consciousness passage on speed. And despite my best efforts to be upbeat and positive about my situation and progress to date, I would eventually wander down the self questioning and negative path of doubt. And then would come the damaging and harsh list of everything that I was failing at because of *@!# CFS.

For me, this was exhausting. And debilitating. So over time I learned to still my mind. Beating myself up mentally wasn’t changing anything except eating up precious energy that I needed for the long haul.

So after you fend off the insensitive comments of others, how do you look upon yourself? Do you fester over your situation? How do you still the negative voices? 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

2 Comments

Attitude – What Others Say

10/4/2011

4 Comments

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 the steadfast 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 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

4 Comments

Supplements – Wading In

Diagnosis - Back Off Please

Attitude – Stilling the Voices

Attitude – What Others Say

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Supplements – Wading In

Diagnosis - Back Off Please

Attitude – Stilling the Voices

Attitude – What Others Say

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