A True Story

I have tried to write about my stay in hospital for a long time now. I just keep staring at the empty screen page and wonder, what I could say. Actually, what I keep wondering is, what exactly happened. The most important question I'd like to get an answer some day is, why.

I have had nightmares every night since I got home, which is very unlike me.  I think it tells a lot about everything. It would be easier to handle, if I had the why part figured out. Any reason would do. But there's none. And that, my friends, is terrifying. Which is why I'm trying now to tell it all, as I feel it's a story needing to be told. Despite the fact that I am absolutely horrified to do so, as I suspect it will do me no good. But, as this seems to be the way how Finnish CFS/ME patients are treated in general now, it must be told. It can't continue like this, honestly. We need help.

As you know, I have had a medication for my rare illnesses that is not very traditional (it’s a research I’m voluntarily taken part of), and it has helped me a lot in these part two years. I have been able to live without constant fear, pain, and struggle that were part of my life before this particular medication. It has helped me to live a life that feels beautiful, meaningful, and worth living for. For bureaucratic reasons, this medication is now downright impossible. 

I tried to find a way to continue the medication through public healthcare. I thought that in modern society of Finland celebrating it’s 100^th anniversary of independence this December, famous for its education, high-tech, and human rights, there would be a way to support the life, well-being, and health care of a citizen. I was confident I’d get help. I didn’t. I went to a Finnish hospital to get help. I came out in much worse condition I went in. 

I try to sum things up, but it’s not easy as there happened so much and there’s absolutely no sense in most of it. So please, bear with me. 

In the end, after many efforts, I got an invitation to go to the hospital for couple of days, to see how the medication works and to decide what to do with it. That’s what I was told. This is the first strange part. I was never told, that I was there in order for them to take the medication off and see how it goes. I only read it afterwards from the medical report that “the patient comes to hospital for the cancellation of the medication”. That teeny tiny little detail would have been nice to know. 

My medication was switched off on the day 3. (With no explanation, what on earth I did there the first two days - despite tiring myself, as I couldn’t rest or sleep.) About half an hour later I wasn’t able to move my legs or hands. My breathing got heavier, and I drifted from consciousness to near or full unconsciousness during the next days and nights. My sugar and temperature levels varied a lot, blood pressure dropped quite considerably during the next days. I was able to whisper at times, often I couldn’t do even that. I needed catheterization as I couldn’t feel my body. I had a UTI. I couldn’t speak or swallow or move if my eyes were open, and vice versa. It was too much for my system to do both. I was dehydrated. I needed to be fed. I needed to be turned in bed as I couldn’t move. There is no mention about most of this all in the medical report. (Oh, they did write I had no difficulties to close my eyes. Yay! I didn’t. That part is true. They only forgot to mention I couldn’t keep them open.)

The medical report states that cancellation of the medication completed successfully. I wouldn’t exactly choose a word “successfully”, unless they mean they didn’t kill the patient. I think we might have a bit different point of view here, as I think if a patient was able to walk, speak, eat, sit, write, see, wash her hair, even pee before the cancellation of the medicine, and after that wasn’t able to do one single thing of that list, and left the hospital struggling to be conscious just to get out of there as quickly as humanly possible… Well. I wouldn’t describe it as a success. I’d go for catastrophic.

Pain is something I am quite familiar with and used to, and I can handle it rather well. I’m so used to it, I don’t even notice it normally, but with the extreme noises in the stroke surveillance, resting was literally impossible. I couldn’t think my migraine and neuralgic pain away - even if I tried my best. (Practicing mindfulness in a room with 3 televisions on, surveillance equipment peeping, people talking and moving all day long, is not the easiest, I can tell you.) It turned out that as simple thing as painkillers was hard to get. But, on the other hand, medicine in general was a bit of an issue, as getting my myasthenia pills on time was not easy either. 

Most of the time I wasn’t able to eat myself as my muscles just denied all collaboration. I needed to be feed. Swallowing was so hard work I couldn’t drink enough, even if I knew how extremely important that was. Later it turned out my dehydration was in the verge of catastrophic already when I arrived in the hospital, but it was ridiculously hard to get simple iv saline – as, you know, that was one of the medication I was denied after the bureaucratic show. For 2,5 years I got regular saline infusions to support my hydration, nutrition, and malabsorption every 2-3 weeks. Suddenly it was considered possibly harmful. So, giving me some in hospital seemed to be a bit of an issue. (I mean, the basic natriumchlorid infusion, seriously? Dangerous? In dehydration?) 

I have a very impressive medical, scientific justification for this simple iv saline treatment, and one of the reasons is that it supports my kidneys that are not functioning as they should. This important treatment was cancelled on beginning of September, and 3 weeks, 3 days later my body started to react. I have had now 3 antibiotics for UTI and there’s no sign of it getting better. The inflammation got very evident in hospital, but it was only because I repeatedly asked for the results, that anyone reacted. Oh, there is no mention of the UTI in the medical report.

A note about the catheterization. There is no mention about that in the medical report either. Nor about the fact that there was ca. 800ml urine in my bladder before the nurses put an indwelling catheter. Nor about the fact that after the chief doctor heard that nurses had put an indwelling catheter two days ago, and ordered them to take it off (as I just needed to get a grip and walk to the toilet), catheterization was needed several times as it’s just not possible to go to the toilet if you don’t feel your bladder, your legs, or the need to pee.

I left the hospital after 8 days, after two doctors (and half of the staff witnessing it all, no way to have some intimacy) came to tell me they have “interpreted your 2 years old ENMG results again and decided you never had myasthenia”, instead they gave me a psychiatric diagnosis. Yes, I’m serious. Don’t laugh. This is not a joke, unfortunately. They told me I can choose to stay in hospital for several weeks or go home. After few hours of hard thinking, I choose to go home, as I knew nothing would change either way. Only, in my papers there’s no mention they gave me option to go home. I’ve received about 4 reports now stating the patient left the hospital without permission. 

Past few years I have heard a doctor after doctor saying that with all the different autoimmune diseases, all the autonomic nervous system dysfunctions, all the rare conditions, it’s impossible to say what’s what and it’s hard to find effective ways to help. But now, suddenly, it’s all psychological, my mind causing it all. That would be a teeny tiny bit easier to accept without few facts.

First. “Patient has no psychiatric problems nor need for psychiatric care” reads in my papers, written by the chief psychiatric of the same hospital some months ago, just to be sure my problems are somatic, not psychological. 

Second. I have measurable test results showing my medical treatment actually works, but they didn’t want to see it. In fact, they didn’t read the medical justification for my treatment either, as “there’s no point, you imagine it all”. As a researcher myself, I do actually highly object it. How is it possible that pure facts are ignored, and instead things are arranged to look like they wanted? In science, it’s called forgery. I doubt it’s different in medical science either.

Third. For all the years anyone who has even tried to solve the mystery of my several rare illnesses and their combination, how they affect each other, and how to help me, not once, not one single time they have hinted that this might all might be psychological. (With the exception of one doctor shouting that accusation at me when insanely furious, but that wasn’t a diagnosis way of expression, that’s was only an insult.) I had an accident and got a brain injury. I imagine it? It’s psychological? I have alfa1-antitrypsine deficiency. I imagine the deficiency of ATT in my blood and also, I imagine the genotype MZ? I imagine Ehlers-Danlos syndrome? (Not to mention psoriasis, migraine, asthma, all the discus generations, POTS…?) Several doctors have diagnosed that I have a severe dysfunction of autonomic nervous system, and it’s even measurable, but it’s only in my imagination? I’m also totally imagining also the dysfunction of dopamine system? Oh, and myasthenia gravis? Imagination too…

And maybe fourth, I should mention here the obvious. There’s no point in hiding or trying to avoid it. After all that happened, there’s no point denying that the switch of diagnosis was purely personal revenge with no medical justification. All that was left out of the medical report, all the bend or even false things there, all the contradiction between what I was told in person and what is said in the reports, all the promises of help, even the promise of not changing diagnosis, not to mention the “care”… 

I have no faith in Finnish public health care anymore. Anyone knowing a good lawyer?