Chronic Fatigue Gets A New Name

This eloquently and clearly depicts what it is like to have this illness – I could not have written anything that closely describes this roller coaster ride. So thankful that I found this blog. I thought I’d share it with my readers so they can understand the health crisis I am dealing with at the moment.

Tales from the Reading Room

So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’

I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the…

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Flummoxed! But I am back!!

I have been simultaneously longing to write again and dreading getting started. I was on such a roll with my blog and my life in general, when a series of events merged to make the perfect storm. Over the past two months, my health, along with my quality of life, dropped to a depth  I never thought I’d see again.

A little over a year ago, I FINALLY accepted my diagnosis of Adult Add and began taking meds and learning about an illness I felt completely removed from. It was liberating, embarrassing, and confusing, all at the same time. Within a month, however, everything started changing. Finally, after so many years of dealing with other “imaginary illnesses” I could think clearly enough to take measures towards improving my health. and my life. I started loving myself more and judging myself less. It has been a little surreal, being part of and also just watching the metamorphosis that was taking place in my brain.

With my new found clarity, I started setting goals and making plans. I had an out of town wedding in 10 months and I wanted to look and feel good for it. I started planning in my head. The first step, and it was a hard one, was giving up gluten. That deserves a post all it’s own, but suffice it to say, that too was life altering. I lost 10% of my weight and began to physically feel so much better; better than I had felt in years. A remarkable ” side effect” of my new meds was that they sidelined the unrelenting Chronic Fatigue that had waxed and waned across my life like a storm for the past two decade.s.

Next I went to a psychiatrist specializing in ADHD. She looked at the constellation of illnesses I had struggled with throughout my life and said these magical words; “This is a fairly typical scenario – I believe you have one or more MHTFR gene mutations. Your physical symptoms are causing your psychological ones.” For anyone who has suffered with Chronic Fatigue Syndrome (no longer called by such a trivializing name), and/ or Fibromyalgia, – hearing those words was like the sky opened and an angels choir began to sing.

Now it’s 2 months away from the wedding. Dealing with the MTHFR, just learning about and weeding through all my genetic information, would be a lengthy process, but I felt more hopeful than ever that I would regain a less tenuous footing on my health. Things were finally shifting!. And then it happened. I accidentally ingested gluten at a house warming party. I, to this day, have no idea how this happened because I was so careful, but that is when the backslide began, in spite of all my efforts to counteract it. One month passed and I still felt “off.” .

To make a long story short, I made it to the wedding, felt OK and looked pretty good, if I do say so myself:) The next day however, true to form, I woke up with a sore throat and felt like hell. I knew this was not good. I do not get a cold – I get 4 weeks of asthmatic bronchitis. But not this time! This time it was pneumonia. The wedding was in early November, and as preparations were being made for New Years Eve,  I thought it was just about gone. It is close to the end of January – and I can not believe how far I felt so fast. I had to put the blog on the back burner, which broke me heart because it was off to a fabulous start. Weak and worn out, with an immune system that seems to be on vacation, tending to my health has had to be my number one priority.

I started this post when it was still 2015.and have not had the energy or mental fortitude to finish it. I just want to let my followers know, I have not given up – I have lots to say and share. I am coming back!! This is an important journey for me, and I intend to stick with it! I am still struggling, so please be patient – but when I can, you can believe I’ll be right here writing. Stay tuned!