Monday, February 24, 2014

The end of the road




This may be a rather long post because I have a lot to say. I feel as though I have been bottling up certain things for a long time and it time to just let  it out.

In the last 4 years I have been diagnosed with ME/CFS, Toxic Encephalopathy, MCS, POTS with NMH and Lyme like disease which may include Boriella, Babesia, Baronella. I have now also been diagnosed with a new one which I will discuss shortly. Now to the outside this would look like a simple case of bullshit or hypochondria. To an insider like me and many of you it is clear that the lines are very fuzzy and that these are all most likely the same stupid illness. How did this happen? Well the problem is that all of these illnesses have overlapping symptoms, there are no reliable tests for any of them and the Doctors that diagnose have very little support from colleagues and the medical system and very little time to actually sit down and examine our extensive symptoms and histories.

So, people like me end up with a long list of ‘maybe you have this, or this, or this’. There are two big problems here. Firstly it really fucks with your psyche to be severely ill 24/7 year after year and not really even know what ‘it’ is. What am I supposed to tell people? Even though I am housebound and exist in a bubble I am constantly having to disclose my status to people … and how do I do that when I don’t know what it is? I find if I say I have ME/CFS people say what’s that, so then I have to say Chronic fatigue Syndrome and they instantly do the eye roll and the conversation is over. MCS is  exactly the same, people just don’t believe it. If I say Toxic Encephalopathy then people say what’s that, and I can explain my body and brain have been damaged by chemicals, which I completely believe is what happened … but I have never received any treatment or the slightest bit of interest from any Dr regarding this. Even the Dr who made the diagnosis never mentioned it again. So it almost feels fake to tell people that is what’s wrong with me. Lyme Disease does and could have caused all of my symptoms, but do I have it .. I have serious doubts. So what do I tell people. Often I just say I have a neuro-immune disease and try to skirt around it. But many people want more info … if I say my diagnosis is not firm people just think that I must be faking it, otherwise of course I would have a proper diagnosis. If I tell people the long list of things I have been diagnosed with then people think I am faking and just collecting illnesses for attention.

The second big problem is that each of these diagnoses’ come with treatment protocols that all have risks and side effects and often make people sicker. I have tried many many things for the various illnesses and most have made me sicker, some in scary and serious ways. The last big mistake was taking Plaquinil which is a kind of antibiotic which can and did cause me serious and long lasting muscle weakness. Would you be dumb enough to try chemotherapy for diabetes? No, you would only have it for cancer. But that is what many of us face. We are guinea pigs trying all sorts of dangerous drugs because we simply don’t know what we have, our Dr’s don’t know and we are so ill that we are desperate to try anything that might help even a little, regardless of the risks. Because, lets face it, the only thing scarier than dying from an experimental treatment is living with a debilitating mystery illness.
My energy is very limited. Over the last 4 years I have dedicated the majority of that energy towards getting better. I research possible diseases and treatments, I study physiology and biology so I can perhaps make links that the Doctors have missed, I talk to other sick people and learn from their experience, and I share my knowledge with others. I maybe have an hour or two each day where I can function. Perhaps its time to stop spending that time playing detective and instead try to spend that time living a life. I Feel that at this point it is unlikely that I will ever know what is wrong in my body. I will die prematurely. I am thinking I don’t want to spend what time is left digging for something that I will never find. I want some happiness and maybe I can get it for an hour a day in simple ways. I have been thinking about this for some time and I think I have a new plan.

There are a couple of things already on my radar in terms of illness and treatment so I figure I may as well address those so I can say that I had one final go, and then throw in the towel and start living my little life instead !!

So, another diagnosis. Yes, another one! It’s a genetic disease called Familial Mediterranean Fever. To have it you need to have a specific double gene mutation. It’s rare but in my recent researching and digging I discovered I have the mutations. I also am a textbook case, so finally I do actually have something that can be clearly diagnosed and not disputed. The classic symptoms are Fevers that start often at an early age. For me it started when I was about 4. I had these frequently through my childhood and they were not attributed to anything usual. They persisted though less frequently thought my teenage and adult years and then when I got sick with the mystery illness 4 years ago the once again became frequent. I now have then at least once every two weeks. Each time the fever is accompanied by bad abdominal pain and diarrhea for several days. Since getting sick I had just thought this was part of the mystery illness, but I know now this is in fact a separate entity. Untreated it will eventually cause kidney failure. Treatment is a drug called Cochicine and is very effective for most people. I started the drug a few weeks ago and typical me … I cant tolerate it. It caused bad bad bad kidney pain and constant abdominal cramping. So I’m not yet sure what I will do with this, but its still on my radar for a short while. If a way to resolve it does not present itself soon I will just drop it and stop wasting time on something else I cannot fix.

The last thing I am planning on doing is one final experimental treatment. It is something that has given good results for a subset of people with ME/CFS and with a bit of organizing is not hard to do. I am not going to say yet what it is but once I start I will let you all know.

If it makes me sicker or does nothing then it’s the end of the line. No more treatments or research, I am just going to start trying to find ways to enjoy the small bits of wellness that I have.

I haven’t said everything I wanted to in this post but I have written all I can for now, and you have probably read all you can for now …

14 comments:

  1. Adrian- I hear ya. Let others do the research. Take as many drugs (as you can tolerate) for symptom amelioration, and have as much damn fun as your fucked body/brain can handle. The fun itself is therapy. Thank-you LL. You ARE an inspiration... and a very good lab rat. But. time for rattie to have fun (although, I'm curious about this last experiment. Anything to do with translating Poo? I understand that's helping a subset of patients!)

    Anyways, you are often in our thoughts, and always in our hearts... go well. Enjoy.

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    1. haha you will have to wait to find out .. but id be happy to donate some poo to you adrian :P

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  2. Thanks Lee Lee. It makes your head spin more with each new issue. I really hope this next step will be of some benefit before you have had enough. A dr once said to me that there will probably be answers in 50 years time and that comment has stayed with me, but I hope he is wrong. I have recently been having the same thoughts. Do I just try and make the most of what I can. I can go out for short trips in the car and now that we have moved there is a lot of places to see. I sometimes feel very close to finding answers but then the next day feel so very far away. I guess time will tell. Thank you for sharing and good luck on your new treatment, I will be waiting to hear how you are doing. xxxx

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    1. thanks Mel, yeah answers in 50 years is good news for the next generation, hopefully they will learn from our suffering

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  3. Hi Lee Lee. Dr Jamie says ME is the illness that is "nearly" a hundred other illnesses! :P For Josie it was nearly lupus, nearly schleroderma, nearly leukaemia ... etc etc ... In the end stopping most things has been the most helpful thing for Josie and working primarily on diet and minimal supplements and neurofeedback; very occasionally O2. Seems the safest possible "treatments" are at least a help, if not a cure ... But we relate ... so many things for so many years that made things if not worse, just static ... Thinking of you and hoping you can at last relax a bit some time soon. I too have stopped most of the research, even regarding diet! Think we know now what helps and what doesn't ... just have to do those things. xoxo

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    1. yes stopping meds can be hugely insightful sometimes !!

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  4. Thanks for posting this Lee Lee, I can relate to a lot of it. I especially do when having to try to explain it to others. " but you look so well " is a common response, I don't actually, maybe on a good I might pass for well. But like you most days are spent trying to find the positive stuff. I am disturbed that I am getting worse over the years. But like you, there has to be an end to testing for everything and trying new drugs all the time. Take Care. xx Steven

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  5. Good blog Lee. Thanks
    Here's an idea: Tell people that you have a B cell immunodeficiency - because that's probably the underlying problem ...... everything else is secondary to that.

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    1. I actually quite like that idea Paul .. B-cell immunodeficiency .... cool

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  6. I've seen other people take a similar path so many times over the years. If someone feels so terribly ill and desperate and if there is no definite diagnosis it is surely natural to make desperate searches for reasons, for a way to turn it all round. As you say, in the case of all these illnesses that we share, the whole landscape is a muddy swamp.

    In the end I think it comes down to whether you have faith in big pharma and allopathic medicine. In the cases of 'people like us', you know I have faith in neither and I took the decision long ago to stick to what I found helped me (change of diet, some limited supps, keeping away from chemicals as much as poss., pacing ...and just so what I can. For the moment there is nothing else. I have watched so many trials, research projects, spats between doctors, crazy cures wander past me in a sort of perverse parade over the years and have little faith in any of it. One day, probably long after I am gone, something will change, someone will find the clue and attitudes will change...as they did with MS and other illnesses. Until then I try to find pleasure in small things, put one foot in front of the other and avoid the craziness and one-upmanship and bickering because that only leads to corrosive anger and disappointment xxx

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  7. Getting sick often leads to further sickness, which then becomes a vicious cycle. I am sorry to hear of your multiple chronic illnesses, I myself have ME, Fibro and suspected POTS, as well as now more problems from medication. It's tough. We must be tougher than we think to endure all of this everyday!
    Following your blog now so I can keep up with your posts, and I look forward to reading more from you :) Hayley-Eszti
    www.hayleyeszti.blogspot.com

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  8. Hi Lee Lee! I have a quick question for you and was wondering if you could email me when you have a moment. hvsj12 at gmail dot com - thanks! hope to hear from you soon. :)

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