Tuesday 31 July 2007

What an excellent machine...

What an excellent machine a computer is, particularly when you have CFS. I can write a sentence, or sometimes only a half, save it to some later time when I feel a little better, go back, write more, rewrite, find words or information in small bits and pieces to add, and then, after a while this kind of coherent text appear! I don’t know how coherent I am in my thoughts, but at least it looks quite impressive to me when I see this growing after a while! Hehe...

To continue my story: I guess I had my moments with my doctors, since I am a cell biologist by training and fascination. I’m not a medical doctor, just a Ph.D. who have worked with cells, how they are built, look like, grow and function, so I know some details about life in general that doctors don’t know! (Hehe...there I got it!). Of course, this was a problem as much as a strength. I probably got in conflict with half of the doctors I met, because they couldn’t take a patient knowing more about some details that they didn’t understood. The rest half could grudgingly accept my questions – and order some more tests – and then there were one or two that really could talk and discuss with me what was going on, what they knew or not, and even come up with new ideas to test together! I guess I was lucky after all! But the first such doctor came to the cardiology department I spent a lot of time at, only 2 or 3 years after I became ill the first time.

During these first years, I had numerous ultrasound tests of the heart, gamma-camera tests, and coronary angiograms, not to mention all kinds of regular blood tests. None of these showed there was really anything wrong with me.

I had my mitral valve prolapse, but that I knew of before, and probably have had all my life, and it was perfectly constant, so it hadn’t change and wasn’t an explanation to my sufferings.

OK, they could see some smaller areas in the heart muscle that had ‘some’ sort of disturbed micro-circulation from the gamma cam pictures; the capillary vessels didn’t allow the blood to flow properly at times. But this finding was varying from time to time, different areas and different extent, so they really didn’t know what to do about it. Anyway, at this point, I got a diagnosis: negative angina or spasm in the capillary blood vessels in the heart!!! The older female cardiologist explained it as ‘sometimes we see patients with the same symptoms as with angina pectoris, but they don’t have any blockages in their big coronary arteries’. Later I learned that up to 10-30 percent of angina patients are in this group!

Well, this prompted the doctors to put me on beta-blockers, calcium-blockers, digitalis and a few other conventional heart medications. Of course I didn’t get better, but I took them for years anyway, silly as I was. Sometimes I had as many as 12 to 15 different pills to take every day! And, ohh yes, nitro-glycerine in various preparations: fast working pills under the tongue, slow releasing to swallow, drip when I was at the hospital, even a paste to put on the chest twice daily!

Well, at least they tried to find something that would help! What a guinea pig I was, but THAT I didn’t mind! Better try something than being ignored!

This weekend...

This weekend has been harsh. That’s why I haven’t blogged for a few days. But that’s how it is living with CFS, some days are worse, some days are less bad, none are good!

ZenMaster

Sunday 29 July 2007

That first summer...

That first summer, my then wife really didn’t understood what was going on with me, and got very annoyed about my ‘laziness’, as she put it. Our two kids were still very young, about four and two years respectively, so of course it was a busy time with them. We both also had advanced jobs, which took much time and effort for both of us. I never questioned that I was ill this first period of time, you don’t do that when your body play such tricks with you, and give you such sensations as when you first come down with CFS. You really feel something is wrong throughout your body, if you have strength enough to think at all! The questioning came later, and I would say exclusively because of people surrounding me, constantly questioning my state, saying like: “You don’t look ill, so why don’t you go about your life as usual” and other similar things. You have certainly heard all these comments yourself! Well, anyway, that first year after becoming ill I went through a LOT of tests and investigations at the hospital, I guess since I originally was placed at the cardiology department, but also because my own opinions! I knew something was wrong in my body, and I was constantly nagging and after the doctors, asking questions and demanding answers, even if it would be “I don’t know”. This is of course the most difficult answer a medical doctor can give! Not for the patient, but for him/herself! Now my energy is depleted in my brain, so I will have to continue later....