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Physical and emotional costs
Here is what I went through when I was sick all that time...
Date: 8/4/2013 11:52:05 AM ( 11 y ) ... viewed 2443 times It has taken me a long time to decide to write this post because these parasites affect everybody in different ways - in terms of which symptoms come to the fore the most.
For me, probably the most significant physical cost was the diarrhea multiple times through the day. From this came food malabsorbtion and malnutrition.
I would wake up bathed in sweat, or alternately shivering, night after night. Additionally, the parasites affected me by causing a lot of stomach gas so I would get sharp stomach pains and these enormous loud belches would come out. If I happened to be asleep, either the pain from the gas, or the belches themselves would wake me up.
I would get no long term relief here either because I could hear my stomach start bubbling (sometimes I would have to put my fingers in my ears to dampen the noise from my stomach) to try to get back to sleep.
Needless to say, insomnia followed.
I had no appetite. In fact hunger pains were a distant memory.
Following from the above was weight loss - I looked like a coat-hanger. I had bloodshot eyes, shaky hands and nausea.
Then there are the emotional effects. Anxiety and depression followed (much of the body's serotonin is made in the gut - so if your gut isn't functioning - this can be lacking).
I was exhausted, so had disordered thinking. Every day was a struggle. Also dealing with repeated antibiotic drug failures took their toll. 10 day courses of serious multiple antibiotic drugs made me nauseus as well...only to discover a month later with stool testing that the parasites were still there.
Then there were the rounds of doctors and specialists. I found, that through my research I knew more than them on this topic. I made sure I knew my stuff and had my large folder of highlighted research, as well as an itemised list of every drug and stool test I had taken since I got ill. This helped when I was told things like: "There's some debate as to whether these amoeba cause illness." I could show them the current research which shows there are resistant forms which can cause significant malaise.
Then there were friends and family, who were initially supportive - after months of illness tend to run out of their reserves of compassion.
Some of the comments I got....
"You've just got an upset stomach. Take a panadol and go to bed."
"You're a bit of a hypochondriac - ha ha."
"I think it's all in your mind. Look at a distant view and you'll feel better."
"I don't believe you're really sick."
None of this helps. I have spoken to people who have found this blog and they have encountered the same things. This is really why I put this blog up. I felt so lost and alone and helpless all that time. No-one really understands what this is like until they have gone through it themselves.
Imagine you get gastro (a stomach bug) and you are vomiting and have diarrhea for a day or so. Well that is what it is actually like except you have it for months on end, and you may be looking after children, trying to hold down a job - and all the while just hanging on by a thread.
Then there is the embarrassment aspect. No one wants to say "I have parasites". It is akin to being a leper. No-one wants a bar of you because they think you might infect them.
Also, if you find your children are also sick, your world crashes down and you wonder how you will cope.
The only way I got through this horrific ordeal was to just try to do something, anything towards a cure, every day. In the end I found someone who could help.
Don't think that you will ever gain completely normal bowel after you are finally rid of the parasites. I now have a delicate stomach and food intolerances. But at least my energy is back and I can hold my head up and enjoy life more.
I do feel that the ordeal changed me, and I do feel that I have lost some of my spark - the fallout from the illness hovers over me psychologically and I worry every time I have a bad stomach or loose bowels. I am trying but I am not sure I will ever be the free and lighthearted person I once was. I hope that this blog can help people.
I did feel so alone in all that suffering.
Kind regards, dsquat.
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