It appears we simply signed up for one of the toughest things ever. Like one could be surfing a modest wave, or erratic wave patterns, but in our case, we got towed out to that GIANT Wall of OVERHWHELMING engulfment.
The only way I make it thru this is to more or less consider today, as about it. Thinking about all the possible future scenarios is just entirely beyond my capacity currently. Nothing here is the Plan. Never did I imagine being this incapacitated and mentally fragile. Emotionally intensified. Physically wiped out.
Pondering past events- is something I certainly can still do fortunately. However, I now find that when I ponder "recent" past events, is all tainted by the worsening of this illness. So I then recall that only six months ago, I somehow managed to go walk 6 blocks, now its 150 feet and regretable. 2 years ago I read a library book. Now, I don't read more than about three paragraphs.
My brother (whom I hardly see, because I can't go off and visit people)...sent one of those Xmas letter updates. What they did over the year, the major developments etc. I've not actually read it yet. Because he printed it in some weird font that literally, my eyes can't read it. So now will I be asking him to send this over in Times Roman? So I can actually read your Xmas message? Perplexing. I never understand how I should interface with others and this illness. So mostly, I don't see people.
I really understand how depressing and heavy the physical impairment part of our disease is. I was in it to for many many times and I never turned back to normal capacity and it is very obvious when I am among others I am the weakest one in terms of psyhical capacity.
But however if I laid in bed, for a day, a week, a month or even more years which was the case for me having difficulties with even reaching the toilet and not able to cook for myself or going to the supermarket a block away would exhaust me like crazy even if I went there with car and everything or those days I was hungry, thirsty and evertyhing but didn't know how to get food... I really do know it.
But for me if your brains just don't work anymore, your identitiy is gone, your memories gone, your ability to reason, to think clear, to overthink, to reflect, to (..... I forgot what I wanted to say...), to read, know that you will forget what you are talking about now with friends, that everything will be gone and lost and unretrieveable or not retrieveable at the right time (whilst in a conversation on the moment you want to say the word or expression or fact).
I was a walking encyclopedia, people saw me as extremely gifted, that was were my whole identitiy was built about. My job was helping people with phd's and dissertations (mainly from behind the computer because I had no physical possibility of meeting anyone and could simply not bring it up so I did work the moments in which I was able). I would write articles, books, ... analyse, scrutinise things, thinking of reserach and possible experimental designs not to miss any confounding factors, i could give speeches and lectures taht would blew people away and I could influence them and knew how to convince them because I would always back what I would say with lots and lots of evidence, all knewn by heart. Everything is gone now...
I look up in astonishment when people just say things wondering about how they could only keep that mind going and put the words out they want to tell and keep up their reasoning without losing what they wanted to say... I am impressed by anyone, people I used to look down now or I could easily argue back against if necesarry (I could defend the devil if necessary always would find an argument to see things in another perspective) because they can do something that used to be where my whole identitiy was about... I was in politics and given the fact I was gifted very wel orally and able to express myself and also scientifically educated chances were really there that I would make a carreer. (As long as this did not implicate I had to be mobile and everything or awake from morning till the evening but just could sit behind my computer and make bright texts or do research...).
I am like an empty shale ... not only physically not worth a penny, well I have been worse. But believe me I would trade it only to be able to give my life back its colour again and those memories, the ability to form memories, to reflect, to think, to reason, to analyse, to be critical, ... Now I have nothing to say anymore, it's better for me to shit up at all cause i speak nonsense or very superficial talks at best, going deeper is impossible for me, let alone philosophing about the world and possible problems like I used too.
My fountain of thoughts and endless inspiration is gone...... now i have to hope for others to save the world while I knew i was a kind of brainac and had a very high IQ exceeding even the majority of people whom I met during my universitary studies and in the academical world now, even though they got phd's and became professors. (There are people that are similar then me though but I can't make the comparision anymore exactly since this shit is going on for 3 years with me so I got dumber and dumber by the day, finding them smarter and being totally overblown by their reasoning and talking so I am clueless: I don't know anymore what I used to think of them or how I was in comparision to them before this shit happens... My memories are gone while my brain was a spunge taking everything up after reading or going to it it once... like a camera.
It is my brain. ANd there is nothing in the world, for no-one, more critical to oneself to one's brain. It makes possible ANYTHING you do or do not, on a daily basis, everything you can ever dream, think of, imagine, ... nothing is possible without a functioning brain!! Whatever your limbs or rest of your physical body says... if you lose brain health, everything your brain is about, you lose what makes you you, the very specific and unique human being... brain health is linked with all quality of life one has got. Believe me.
If I see people here talking things like "my very worst symptom is back" then I think: you ain't see nothing yet.
It is easy to complain - during the first 15 years I was ill I never even found this forum: i was to ill and i accepted my faith too and didn't think I would crack some magical healing code - and i was to busy focusing on what I could do: reflecting, thinking, analysing, being critical, ... (of course on extreme events you are also to tired to do that, but I wouuld recover and be able again, even tough I would write from my bed what I have done many many many times).
This is not a message to hurt anyone, but a message that hopes to make people aware that they shouldn't complain like their QOL or lives are hells and disasters. There could be one day, that you lose even more...
And then you got real reasons to complain... Embrace what you still have got left today! It might not be there tomorrow!