So, it seems that I am improving again. Six months ago I came back from Argentina, where I spent the boreal winter. I felt better there, as I usually do during summer, in Italy. Feeling better means being able to think, to read, to do calculations, to draw. To exist, in one word. And also to move around a bit, which is not truly relevant for me, though.
I came back to Italy at the end of March (blog post), sure that I would have had other months of improvement ahead of me, given that we were at the beginning of Spring. But it hasn’t been the case, I got worse: for six months I haven’t thought, and I have been living horizontally, in silence. There were days in which it seemed that I was starting to improve (like when I recorded this video), but then it didn’t last. I can’t remember these six months, in my subjective time they sum up to a week or less.
Not sure why it happened: perhaps the 48 hours of the chaotic journey back to Italy damaged me so badly that it took half a year for me to regain the status quo ante, or maybe the strange flu I got in March, while in Argentina, made the disease worse. In the life of an ordinary person, this would be a rather exceptional episode, for me it is the rule: the improvements are the rare exception. I have lived like that since I was 20.
And now, because I usually get worse at the end of September, I know that I am about to start my descend to Hell again. And this time I can’t move to the austral hemisphere, because of the pandemic. So what am I supposed to do in the few days of life I have left? I’ll do what I have always wanted to do: applied maths and drawing, with only very short term goals. Something that I can finish.
I share these private vicissitudes only because I think that it is important to let the world know about this struggle. It seems unlikely that I can discover the reason why this curse has stricken my life, but I will continue studying this phenomenon: most of what I study, when I can, is about new tools to apply to my own biology.
4 thoughts on “Six Months”
Forza Paolo, mi piacerebbe dirti che c’è una ragione per tutto, ma io per primo non ci credo. Penso che purtroppo abbiamo vinto a una lotteria senza neanche comprare il biglietto, proprio come nelle migliori spam di phishing.
Io anche quando sto molto male cerco di fare qualcosa che mi dia almeno un minimo di piacere e soddisfazione.
I know you know this, but you aren’t alone. This illness isn’t fair. Life isn’t always fair. I, too, have experienced seasonal improvements and worsenings. I’ve experienced months and months of a quite low level quality of life and then some improvement which I’m always thankful for. Summers in the Western U.S. are 90-114°F or so and a worse time for me w/ ME/CFS, POTS/OI, etc. IF you have any autoimmune tendencies, autoinflammation, autoimmunity runs in your family (very common in ME/CFS), or some mast cell activation (has a “tenderizing” effect on neck ligaments and connective tissue per a neurosurgeon in the EDS & ME community in the U.S.)…you likely could benefit from a Quercetin (supplement) and histamine blockers regimen. I don’t know your subset of this illness but this is a VERY common instruction from my complex chronic illness clinic that’s one of the top in the U.S. (in my opinion) for ME/CFS in combo w/ EDS, Mast Cell Activation, autoimmunity, infection. Consider it. Quercetin in my opinion may work similar to Hydroxychloroquine (both zinc ionophores) which tamps down some inflammatory cytokine responses it seems. Also due to better zinc absorption perhaps, pre COVID Hydroxychloroquine controversy on what you say…my university rheumatologist told me in January 2020 that her patients who get viruses that drag them down for mos (me Fall & Winter), often get sick way less or hardly ever get sick comparatively to how it used to be for them, after they start Hydroxychloroquine. Its used for autoimmunity. And its an anti-malarial. Currently I’m sticking w/ Quercetin plus taking Claritin (loratidine is the generic name) as it seems safer than Hydroxychloroquine and I clearly have had benefits. I didn’t end up in the emergency room this summer…something that’s happened for I think 3 summers in a row previously as its felt I had some kind of encephalitis from brain feeling/being inflamed and getting more ill w/ ME & POTS in hot summers. All the best! The kynurenine pathway treatment trial coming up is intriguing (through Open Medicine Foundation). And Suramin trial (UC San Diego, CA). Cortene is interesting…trial was in U S. in UT I think or maybe AZ state. And Covid is drawing much more attention to this illness, besides all the pain and loss its caused. Legislation is in U.S. congress now that may dramatically increase funding for post-COVID & ME/CFS research. So, be encouraged some. Help will come.
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I also tend to get worse each year, starting in late Spring. The best year I’ve had in recent memory is one where I spent a month during mid-late spring in another hemisphere. I found that by topping up my sun exposure I was able to forestall the usual winter decline.
If you ever find you are unable to spend 3 months in Argentina, perhaps spending just one month at the start of winter might be somewhat useful?! Just an idea to put in the mix.
Hi! Thank you for your comment. Are you in the southern hemisphere? In my case, the seasonal improvement is slow, it seems to require about one month, while the worsening is more like a switch that turns off: in the span of 48 hours or so I become a statue. I would say that a month for me would not be enough to be able to go through the following cold months, but it could be a good solution for extending the summer improvement by one month, granted that I move to the southern hemisphere during the month of October. But in that case, it would be more efficient, economically-wise, to remain there for a longer period.