I’m on the train to Paris. I’ll be coming back a week on Monday. It’s a comfortable, easy trip. The reason for my travel is I’m attending a two-day course on burnout – part of my training at the Gregory Bateson Institute. I’d planned on postponing this module until next year or the year after, given that my main priority now is building my working capacity back up following last year’s accident. But earlier this year, the whole curriculum was redesigned (it’s a good thing!), and the material on burnout will be incorporated into a longer module which is largely redundant with the courses I’ve already taken. So: now or never.

Following my relapse/brain crash earlier this year, I took the decision in March to pretty much clear out anything that was in my calendar. It was a tough decision, but it was the right one (people who have experience with chronic fatigue will know what I’m talking about). For those few plans I held on to, I « cleared the decks » around them to ensure they would not interfere with getting my work done, and that work would not jeopardise them. This means I took the whole week off for these two days of training, just like I took the whole week off a fortnight ago to go and see Mika live at the Caribana Festival. It worked.

In my pre-accident life, I might have travelled on Monday, attended the training on Tuesday and Wednesday, and travelled home Thursday. The « recovery » version of this is to add at least a day of padding in between training and travel, with nothing planned, so I can rest/stock up on « energy »/recover, and reduce the risk of (for example) travelling on a maxed out brain. I figured I might as well add on a few extra days (particularly as Oscar is not around anymore – something I’m really thankful for to be honest, with the awful heat wave that hit us over the last week), and catch up with a couple of people, if I’m in good enough shape.

This is my fourth « real trip » since my accident. I went to France twice for extended week-ends with family or friends last year. Each time was absolutely exhausting (but nice). Then after Christmas I went to spend some time at the chalet – first time I was going back since my accident – and we know what a disaster that turned out to be. This time, I think I’ve planned and organised things well enough and with a lot of caution.

As I was packing and preparing for departure yesterday, I realised I was really stressed out. More than usual. Packing and preparing to travel has always been stressful for me. It’s not the actual travel or being in a strange place or away from home. Or maybe just a little. What it is mainly is all the executive function acrobatics required in dealing with travel-related logistics:

• making sure I do the things that need to be done before leaving
• deciding what to bring with me (this is a huge one)
• organising cat- and plant-sitting
• inserting these « unusual activities » into my days at the right time, in the right order, and with enough time to carry them out
• leaving wherever I’m at to go “somewhere else” – the transition itself.

Putting things in the suitcase is actually a part I like. It’s real-life Tetris: fun. Once I’ve locked the door behind me and am heading out with my luggage, I’m good. But before that, it’s complicated. I have got much better at dealing with it over the years, and with the clearer view on my executive function challenges that my ADHD diagnosis brought me a few years ago (and meds!) it’s even better.

I don’t have a very clear memory of how preparation for my two France trips went last year (only that I overpacked, a sign that making decisions regarding what to take or not was difficult, so in doubt, pack more). But I do know that packing for the chalet in December was a nightmare.

OK, I had already « crashed » during the previous week, but I’d taken rest to recover and felt functional enough to tackle it. And yes, it was also the first time back to the chalet since my accident, but I was really looking forward to heading back. I was aware there was maybe a little (normal) underlying apprehension that I might not be perceiving.

What apprehension I could feel was not about going to the chalet, but about the possibility of an unexpected emotional reaction to being there again. It was the same thing when I went back on the ski slopes: not scared of skiing, just worried I might have misjudged my readiness and have some kind of PTSD-like reaction to being back on my skis or where the accident took place. Nothing like that happened, by the way. Everything was fine.

This illustrates where most of my post-accident anxiety lies. I am normally pretty good, in general, in predicting how I’ll react, what will be challenging, what I can and can’t deal with. I know myself well, including my biases, and of course I know that when you expect something to do this way or that, it does have an influence on the outcome – I do my best to correct for that. Since my accident however, I have been blindsided by my brain more times than I can count. At times I feel like I do not know myself anymore, though of course I’m still me and very much feel me, but when it comes to “what I can take”, whether mentally, physically or emotionally, I’ve had a lot of bad surprises.

I am repeatedly finding myself in the situations where my brain does not deliver in the way I expect it to, and where I misjudge what I’m able to do. In my accident-recovery-life, the consequences of these prediction errors are swift: I crash. I don’t know if it hits everybody this hard, but for me in any case, it’s pretty traumatising to have my brain brutally and unexpectedly go on strike like that. Both the “brain not working” and the “didn’t see that coming” aspects are really scary.

So now, as time goes on and my recovery stretches out way longer than I initially imagined, as the clock of certain administrative deadlines regarding my return to full work capacity start audibly ticking, as I fail again and again to know my fluctuating limits, I can feel my underlying confidence in my abilities and self-awareness slowly erode, leaving place to self-doubt and increased anxiety about dealing with life and the world. It sucks: the anxiety is not crippling, it’s just a nuisance and an energy-drain at this stage, but I can see the process and the slope I’m on, and I do not like it one bit. Breathe. Relax. Deal with today. Be patient. Hang in there. Keep at it. Trust the recovery process. All this works, and I don’t feel in danger, but it’s more and more work to not let myself be dragged down.

Right. So there’s that. My trust in my ability to manage myself and deal with life is weaker than it was. So my baseline anxiety is higher, my executive function is struggling more, and I tire quickly. But as I was walking to my neighbourhood station to catch the local train a few hours ago, I understood that something else was probably coming into play in terms of post-accident travel and packing anxiety.

You see, my accident happened on the very day I travelled to the chalet for my holidays. I hadn’t been there for a while, I’d actually emptied the chalet of all my stuff and Oscar’s when I had last departed, so it was already an “increased stress” packing and travel operation. Nothing disastrous, still quite within the realm of ordinary, but not a walk in the park.

I got to the chalet (later than I had intended), got Oscar settled, dumped my unopened luggage in a corner and headed off immediately to get a couple of hours of skiing in on this first day. When I fell, I was heading back to unpack and enjoy the evening. I didn’t make it back: I spent the night at the hospital, in the haze and stress you can imagine, worried about my shoulder and my old diabetic cat who was alone at the chalet, trying to make decisions and organise logistics (How can I get back to the chalet? Should I go back to Lausanne? Who has a good shoulder specialist? Who can help me with my car as I can’t drive? That’s just the start of them). The next day a friend picked me up at the hospital and drove me back to the chalet, and another one came to help me empty the chalet and drive me back home. It was horribly stressful. I was in pain, I was freaked out, and instead of resting my concussed brain I was in full crisis management mode. It didn’t get better over the next two weeks.

I wouldn’t be surprised if my accident taking place just on the heels of travelling to the chalet didn’t add an extra layer of “negative association” to a transition that was never that easy for me to begin with.

Say you have a pet who always stressed out when heading to the vet’s. You do stuff to make it smoother: stay calm yourself, get your pet used to the carrier or the car, add treats, maybe a mild sedative, maintain usual routines as much as possible… It’s not great, but it’s not a disaster anymore, it’s manageable. And then, one fateful vet visit, something “bad” happens there. Not on purpose, of course. An exam that’s longer or more intrusive. A different vet. A loud noise at the wrong time. The pet freaks out, has a really bad experience.

Well, chances are that the next time you prepare to take your pet to the vet, it’s going to be more complicated.

That’s how I feel it’s playing out for me. I’m not actively scared of travelling or having an accident. But I’m clearly more stressed when preparing to travel, and some part of that could very well be the proximity of my accident to travel which has left a negative association. Not PTSD of course, but maybe on that continuum, probably closer to normal than pathological.

In 2019 I had a bad car accident (which resulted in surgery on my right wrist six months later). I was in a roundabout when a car entering it hit the back of my car right from the side. I didn’t see anything – there was a loud bang and choc and suddenly I was heading off the road right onto a big metal signpost solidly anchored in the ground. The car flattened it, ripped it out of the ground, and in turn it bent the car frame into a right angle. The car was totalled, we were lucky. I drove quickly afterwards with a rental, without issues. I’ve always liked driving and never been afraid at the wheel. But for months afterwards I felt a tiny surge of apprehension when going through roundabouts (it even still happens sometimes now when I’m on the precise spot of the accident). Nothing huge, but a clear signal – and this was on the backdrop of an activity (driving) that was very positive in terms of associations, compared to packing/traveling which was already fraught.

We’ll see how things play out over the next months and years. But I think I’ve put my finger on something that wasn’t on my radar. You know how sometimes you have an insight that just feels like it’s the missing piece? That’s what this feels like. In my experience, it’s often enough for me to just understand this kind of mechanism to defuse it. Like when I understood that a huge amount of my anxiety over Oscar’s impending death was the possible consequences this loss would have on my recovery timeline, given the post-accident uncharted territory I described higher up when it comes to my ability to “deal with life” in these times.

I typed this on my phone, with an external keyboard. Pretty comfortable I have to say, but not quite enough that I feel like adding links (there would be a good handful to add). I’d also like to say more regarding continuums between normal and pathological, and also on the somewhat related question of normality: when it comes to living beings, normal/average is a mathematical abstraction (or a bell curve), which should make us think real hard about how we frame certain realities (e.g. “neurodiversity”).

Anyway, I’m going to leave things there. I’m starting to feel a bit of motion-sickness and I feel just about ready for a nap in my comfy train seat.

Tellement trop chaud que mes neurones sont liquéfiés. Je sais, c’est comme ça pour tout le monde dans cette vague de chaleur caniculaire. Faites attention à vous.

Je voulais écrire des trucs, ces derniers temps. Mais j’ai dû faire plus attention à économiser mon énergie. Je suis en train d’apprendre, encore. Je suis dans un programme d’ergo (quelques séances en individuel, quelques séances en groupe) sur la gestion de l’énergie, et je suis déjà en train de comprendre des trucs utiles et nouveaux.

Comme par exemple: ça vaut la peine d’économiser l’énergie, comme l’argent. Le but c’est pas juste de ne pas se retrouver dans le rouge (batterie à zéro ou réservoir d’essence vide). C’est plutôt de rester dans le vert et de recharger dès que le orange fait mine de se pointer à l’horizon.

Ça me fait penser au diabète félin. Un chat diabétique peut entre en rémission, c’est-à-dire ne plus avoir besoin d’insuline. C’est pas garanti mais c’est réaliste. Ce qui va aider, c’est de maintenir la glycémie du chat quasi tout le temps dans des valeurs de glycémie “non-diabétique” (dans le vert). Et si on fait ça pendant assez de temps, on peut réduire l’insuline, petit à petit, prudemment, en prenant garde de toujours rester “dans le vert”… jusqu’à pouvoir complètement arrêter l’insuline.

Ça change ma façon de voir les choses. C’est pas parce que là, je me sens assez en forme pour m’activer et faire quelque chose, que c’est une bonne idée. Il vaut peut-être mieux me reposer et “mettre de côté”.

Une autre chose que je remarque, en remplissant un tableau journalier de mes activités et de mon “niveau d’énergie” (estimé, entre 0 et 10, au début on fait ça n’importe comment, avec l’entrainement on devient plus précis). Alors oui, ça fluctue le long de la journée. Mais j’observe déjà des choses intéressantes. Par example, c’est bête, hein, mais manger, ça me redonne du jus. Je vais remettre en place mes snacks entre les repas.

Aussi, quand je suis active, j’ai de l’énergie, ma fatigue disparaît – et du coup, je ne peux pas me fier à ce “signal” pour savoir si c’est trop ou pas. S’écouter, c’est pas toujours la solution. Des fois il faut se connaître et se calculer. Prévoir des pauses même si on n’en ressent pas le besoin, pour s’extraire de l’activité et pouvoir évaluer où on en est. Ça paraît bête, aussi, je sais. Mais c’est en train de rentrer. C’est comme boire et manger, au fond: on n’attend pas de crever la dalle ou de crever de soif. On a des heures de repas, ou quelque chose qui y ressemble. On sait ce qu’on a besoin de manger pour tenir jusqu’au repas suivant. On sait qu’on a besoin d’un snack – ou pas.

Donc voilà, c’est intéressant, déjà utile, et ça me donne de l’espoir.

L’autre truc cool: demain j’ai mon premier rendez-vous de logo. Je sais que je n’ai pas l’air d’avoir des soucis de langage, comme ça, mais j’en ai. Ils sont légers, je les compense. Mais certainement que ça me fatigue. C’est ce qui fait, aussi, que “boire un verre” ou “s’appeler” ou “se voir”, ces activités sociales que j’apprécie tant et qui paraissent si banales, ce sont maintenant des choses que je dois bien prévoir, à côté des rendez-vous médicaux, des séances du boulot. J’ai un quota interactionnel. Frustrant, mais je ne peux pas me permettre de l’ignorer. Se voir pour papoter, c’est un truc qui me coûte plus d’énergie que ce qu’on pense, même si c’est de la discussion légère. Je dois rationner.

Il fait chaud, donc mes bonnes intentions de reprendre mes balades quotidiennes, elles ont fondu. J’ai réinstallé ma clim dans la chambre tout à l’heure, même si je n’ai pas de vieux chat malade, parce que la nuit passée il faisait tellement chaud que j’ai dû dormir avec tout ouvert, et qu’à 5h30 du matin la lumière et les oiseaux m’ont réveillée, la chambre même pas tellement plus fraîche qu’au coucher. Donc tant pis, c’est chiant, mais j’ai installé ma clim.

Un truc au sujet duquel je dois écrire, et dont je parlais hier avec ma binôme de planification hebdomadaire, c’est l’idée de “programmer sa tour de contrôle”. (Oui, stratégie TDAH répertoriée, qui mérite sa propre publi, et que j’appelle dans ma tête le “si… alors…”) La tour de contrôle, c’est la partie de nous qui nous observe pendant qu’on vit, et aussi pendant qu’on s’enlise ou bien qu’on fait des trucs qu’on sait qu’on ne devrait pas faire, mais on ne peut pas s’en empêcher. C’est probablement pas présent la même chose chez tout le monde, évidemment. Mais si c’est là, on peut l’utiliser, en préparant à l’avance des instructions ou des “vaccins” pour parer à nos travers récurrents.

Un exemple: je regarde une série télé, le soir. Un épisode. Oui, je vous entends, rire, là-bas au fond. Un épisode, c’est l’objectif. Oui, oui. On sait comme c’est: oh, allez, juste un autre. Tout est construit pour nous faire céder et regarder le suivant. Alors que faire? Parce que quand j’arrive à m’en tenir à un épisode par soir, c’est un très bon élément de mon rituel du soir. Mais quand j’arrive pas… et que j’enchaîne jusqu’à bien trop tard… c’est pas bon du tout.

Donc ce que je fais, c’est la chose suivante: avant de lancer mon épisode, je me rappelle (je ne le fais pas à haute voix, mais on pourrait) que je veux regarder un seul épisode, et qu’à la fin de l’épisode, soit ça va se terminer sur un cliffhanger qui me donne envie de connaître la suite, soit il y aura des tensions pas résolues entre les personnes ou dans l’histoire, qui me laisseront frustrée et désireuse de continuer pour ne pas rester sur ça, et que je vais quand même arrêter là, malgré tout ce qui est mis en place pour me donner envie de continuer, même si c’est frustrant et pénible, je vais cliquer sur la pomme en haut à gauche et déconnecter ma session télé.

En gros, je me prépare moralement à faire face à la difficulté que va représenter pour moi de m’en tenir à ma décision de regarder un seul épisode. (Pourquoi un et pas deux? on pourrait se poser la question. J’ai réalisé que si j’en ai regardé deux, je suis trop prise dans l’histoire et c’est encore plus difficile d’arrête qu’après en avoir regardé juste un. Un, j’arrive. OK stop bye.)

Ça peut s’appliquer à des tas de choses, qui méritent donc d’être détaillées correctement dans un autre article.

Il fait trop chaud, mon ordinateur a trop chaud, mon téléphone a trop chaud, mon chat a trop chaud. L’immeuble a trop chaud. Bref, trop chaud.

Hier j’avais deux ou trois choses à cuisiner. J’ai déclaré “soirée fournaise à la cuisine”, j’ai fermé la porte, et j’ai cuisiné tout en parallèle. Les poivrons à la poêle, la tarte tatin à la tomate, et l’aubergine (“popbergine”) dans le air fryer. Assez contente de mon organisation. Là je suis bonne pour un bout sans avoir besoin d’allumer une plaque.

Comme chaque année en période de canicule, je suis effarée-consternée de voir à quel point, même après toutes ces années (on devrait être rôdés maintenant quand même) les gens continuent à laisser des fenêtres ouvertes (à l’imposte ou normalement, peu importe) en plein après-midi quand les presque 35 degrés à l’ombre vous assomment contre le bitume dès que vous faites un pas dehors. Je pige pas, les gens. Quand l’air du dehors est plus chaud que dedans, ouvrir, ça réchauffe l’air de dedans. Physique élémentaire. Si vous voulez un bain frais et que vous rajoutez de l’eau chaude dedans parce que vous trouvez qu’il se réchauffe trop vite, il ne va pas devenir plus frais… Si vous voulez de l’air (c’est bien l’air), y’a des trucs qui s’appellent des ventilateurs.

Et en passant, les animaux domestiques, comme ils ne transpirent pas comme nous, et que le ventilateur nous rafraîchit en favorisant notre transpiration, ils profitent pas tant du ventilateur. Le seul truc qui leur importe, c’est la vraie température de l’air. Et pouvoir se poser sur un truc frais: les catelles, un tapis refroidissant…

Je vais arrêter là, histoire de ne pas entraîner votre cerveau dans la fonte du mien. Il fait vraiment trop chaud.

Aujourd’hui j’ai compris que je devais laisser tomber ce jeu d’équilibriste qui consiste à essayer d’en faire autant que possible mais pas trop. On parle de baisser la barre, et j’ai beau l’avoir baissée tellement de fois que sa position initiale semble sur une autre galaxie, je me heurte encore et encore à la réalité qu’elle est trop haute.

Je n’ai jamais eu l’impression de mettre la barre haute. Pour moi, mettre la barre haut, c’est vouloir faire bien, c’est être exigeant. Je ne me vois pas comme ça. Je choisis délibérément de mettre la barre quelque part autour de “juste assez bien”, “attentes modestes”, “y aller mollo”. Mais ça, c’est l’histoire que je me raconte. Même avec cette histoire, elle est bien haut, ma barre.

Essayer de régler la barre à la hauteur juste prend de l’énergie. C’est du travail. Me demander si c’est raisonnable de prévoir ceci, ou cela. Essayer d’évaluer si je suis assez en forme pour x ou y, ou si je ferais mieux d’annuler. Tenter de deviner si ça va le faire ou pas, pour ce projet posé il y a longtemps dans le calendrier, mais qui se rapproche, dans quelques semaines, dans quelques mois. Prévoir un plan B, un plan C. Peser l’agenda, revoir sans cesse les priorités et les plannings pour les ajuster à la réalité du moment. Et au final, me heurter quand même aux conséquences d’en avoir trop fait, d’avoir présumé de mes forces, d’avoir trop voulu, trop vite, trop tôt, pas assez de repos. La fatigue, le cerveau qui câle, la tête qui fait mal, la frustration et la déception, le moral qui finit par se casser la figure.

Alors j’ai compris que c’était le moment d’arrêter de faire le funambule. Arrêter de me dire que je vais faire ce x ou ce y, et que je verrai le moment venu si ça le fait ou si je dois renoncer, parce que c’est OK et bien de s’écouter et de dire “ouais, non, en fait là, j’arrive pas.” Oui c’est OK. Mais quand c’est le mode de fonctionnement de base du système, c’est s’exposer à l’échec encore et encore.

Il faut approcher les choses autrement. Partir du principe que le projet par défaut, c’est rien. Ôter tout ce qui traîne sur la table. N’y remettre que l’essentiel, pour avoir la place d’y travailler. M’épargner d’espérer que “la semaine prochaine ça va le faire”, pour juste être déçue, et en ayant grillé du carburant cérébrale dans l’exercice délicat d’évaluation et d’équilibrisme. Plutôt que de renoncer aux vacances une fois l’hôtel réservé et les bagages chargés dans la voiture, mieux vaut ne pas les organiser. Si on est trop fatigué et qu’il vaut mieux rester à la maison, autant avoir évité de se fatiguer en amont dans l’organisation et la préparation.

Je me sens plus sereine, cette décision prise, même si elle est loin d’être facile et extrêmement frustrante. Mais ma charge mentale vient de s’alléger considérablement, et ça, mine de rien, c’est un élément important dans le bon déroulement d’une convalescence. C’est compliqué de permettre à un cerveau de récupérer quand il est le terrain permanent de soucis, d’inquiétudes, de scénarios, d’hypothèses, d’espoirs et de déceptions.

Priorités absolues: le repos; prendre soin de ma santé (au-delà de l’accident) et de celle de mes chats; la reprise du travail; un minimum de vie sociale. Pour ça, nettoyage par le vide. Il vaut mieux, à ce stade, avoir dit non à quelque chose et me retrouver le moment venu suffisamment en forme pour me dire que j’aurais pu accepter, que le contraire.

Objectif: trop en forme pour me reposer, plutôt que pas assez en forme pour faire. On peut plus facilement bâtir sur du vide que s’il faut commencer par démolir d’abord. La charge mentale économisée en bonus.

Ce que je fais là, c’est m’assurer suffisamment de marge. M’ôter la pression de vouloir faire. Réduire les attentes au minimum. Poser la barre par terre. Ce n’est pas trivial. Il y a des deuils à faire. Mais je sens déjà que je respire mieux. Et je garde l’optimisme que dans le vide ainsi créé il y aura par moments des jolies choses qui n’auraient pas pu avoir lieu autrement.

Ça va le faire.

“I’m sick and tired of being sick and tired.” Yeah, that pretty much sums it up. I am not dealing with my Christmas relapse, or recovery setback, or whatever one calls it, very well. When you’re on a long recovery and finally feel like your head is starting to be above the water, life is starting to have a feel of normalcy, you’re back to work (part-time, and it’s tough, but still, beats 7 months completely off work) and you feel like the end of the tunnel is in sight, a few more months, all the efforts and frustration are paying off.

And then, a crappy sequence of events, some under my control, some not. Having to abandon my guests at the table on Christmas Eve. Reaching the end of my two-week vacation and thinking “there’s no way I can go back to work on Monday, I’m in worse shape than before my vacation”. OK, add another week. Reach the end of that one, and more crap (literal crap, threatening to engulf my coworking space) accumulates, so yeah, guess we had better add another week. And another. And another.

When does this stop?

In the end, I was off nearly two more months. I was able to crawl back to work three weeks ago, but of course, bad timing: I wasn’t expecting to be out of commission in February, I was expecting to be “nearly fine”. So I had days of training planned. A singing workshop. Cancel? Maintain? Use vacation days? Try to compromise? Never mind the details – the cycle of frustration continues. I can see I’m not yet back where I was at in October. I feel like I keep lowering the bar, and I keep hitting the wall that tells me it was still too high.

At some point after my accident, I told myself “OK, this will take 6 months to a year of my life. I’ll deal.” — now, in addition to being less well than I was 3 months ago, I have to face the fact it’s going to take longer than that. Longer than that to be back to work with my usual workload. And worse, I’m understanding that “back to normal work days” is not going to be the end of it – but the start of what comes next. Reconstruct the rest of my non-work life. Falls at judo? Not before I’m properly back to work, for example.

Right now I think I managed to get myself to judo once since my Christmas crash. I haven’t been back to my singing rehearsals. I’ve put most of my social life on hold. I keep saying “no, no, no” to myself.

Of course, I wouldn’t be painting a fair picture without mentioning everything I’m figuring out. I’m learning a lot. The importance of rest, the importance of sleep, the importance of going on a daily walk. The importance of not pushing myself, of saying no, of making cancellable plans, of leaving things on the back-burner. Yeah, I was doing that before. But this is a whole other coat of paint.

I’m bored, I’m frustrated. I miss my old life. Everybody is understanding, and I’m so grateful for that. Everyone gets it: health first, rest first, listen to your needs and limits, take it easy. But the problem is I don’t want to. I keep having to fight myself to not overdo it.

This afternoon I came home early from my singing workshop. Skipped the afternoon. I need to be able to work tomorrow. So I skipped the afternoon. Everybody was super supportive about my decision. Except for me, that is.

After a quick tour of the garden with Oscar (he’s still hanging in there, although he had two seizures this last week – we increased his meds) I did a bit of my jigsaw puzzle but it was quickly clear that even that was too much for my poor brain. So I flopped on the couch, wrote a bit in my journal, and lay down and closed my eyes, because I felt tired, brain a-buzzing.

And this is what I realised: needing to rest feels like punishment to me. It makes me miss out on the fun things of life. It feels like a failure in self-management. I overdid it again. And of course, as all this is in the “invisible illness” department, I get hit with a bout of imposter syndrome every now and again. Am I really that incapacitated? Am I maybe not as unwell as I think? Am I confusing tiredness with lack of motivation, a moral failure? That’s the story of my life regarding tiredness, by the way: I have spent decades (hi, undiagnosed ADHD) interpreting tiredness as lack of willpower or motivation. Pushing myself through it, because there’s no objective reason to be tired, right, so that can’t be it, it’s probably an excuse I’m giving myself because my mood is down or I just don’t want to face something that’s a bit uncomfortable.

The result is that today I really struggle to tell the difference between lack of motivation, where it can make sense to push oneself to get going (especially with ADHD) and tiredness, where it is absolutely not a good idea to push oneself (especially with post-concussion syndrome).

I’m fed up of having to manage all this. Fed up of crashing, fed up of making mistakes and forgetting things, fed up of brain bugs, fed up of not being able to do the things I enjoy, fed up of having to pay so much attention.

And all this, whilst being pretty much certain that I will make a full recovery. This is still what a typical recovery pattern for post-concussion syndrome looks like. The timeline is uncertain. But the destination is pretty well known. I feel extremely lucky that all this is expected to be temporary. That I will recover. That is not the case for people living with chronic illnesses or disabilities. It’s a different can of fish, but my experience this last year has clearly given me a greater understanding of what it is like to live with limitations that are “not expected” by the world around us. It sucks.

So, this is me being fed up with all this. I am out of patience. I am tired of the frustration. I’m sick of having to hold myself back. I want to fast-forward to when all this is done with.

I wish I were somebody who liked naps and idle time. Really. It would make things so much easier if when I felt tired, I could go “ooh lucky me, I’m allowed to take a nap!” — but unfortunately, my brand of hyperactivity pulls me clearly in the opposite direction. I want to do, do, do, and do more.

Taking care of myself is a difficult task. It is not easy. It actually takes a lot of energy. A lot of energy to not do. To stop. To be cautious. To say no – to myself, mostly. To watch the days and weeks and months go by and the pile of pots on the back-burner get larger and larger.

Here I need to insert something hopeful or optimistic or reassuring because I don’t want you to worry about me. I’m not going to stop doing everything I can to ensure my recovery goes as well as possible. I’m lucky to be in good medical hands. But I’m fed up. And right now, if you want to be supportive, I think that is what I most need recognised. How frustrating and discouraging it is that it’s taking so long, that I can still do so little, with March 17th just around the corner. This is not where I hoped I’d be.

Encore un truc que j’ai mis sur Facebook qui “devrait être un billet de blog”. Une idée qui me passait par la tête. Sur Facebook, pas besoin de titre, on pense à haute voix, on laisse des fautes, c’est pas grave. Ici, je polis un peu plus.

Ce qui manque à notre système de santé quand on tombe malade ou qu’on a un accident qui réduit sa capacité à défendre ses intérêts en tant que patient: une personne-ressource, genre un “case manager au service du patient”, qui prend en charge de:

• trouver les spécialistes (médicaux) ou ressources (aide au ménage, paramédical) qu’il faut – orienter pour éviter l’errance médicale ou les retards de prise en charge
• gérer l’administratif: ordonnances, certificats médicaux, rapports avec les assurances, agender les rendez-vous médicaux et tout le reste – toute la bureaucratie supplémentaire qui tombe sur le patient
• avoir une vue d’ensemble des symptômes, diagnostics, examens, traitements, – bien connaître le dossier médical
• possiblement d’autres trucs auxquels je ne pense pas juste là.

Pour les personnes en couple c’est souvent “l’autre” qui joue ce rôle, pour les enfants, c’est les parents. Quand on est seul… la réalité est qu’on a souvent une moins bonne prise en charge.

Evidemment, le noeud de l’affaire c’est “qui paierait”, j’en ai bien conscience. C’est pas gratuit. C’est un “rôle” qui demande des compétences, mais qui manque vraiment dans la prise en charge, d’autant plus dans un système socio-médical qui est de plus en plus sous pression et bureaucratique (et faillible, sur le plan administratif).

J’en ai clairement ressenti le besoin avec mon accident (mais j’ai d’autres situations dans mon entourage qui le montrent également, à mon sens). Juste après mon accident, j’ai du déployer beaucoup d’énergie et de ressources (heureusement j’ai beaucoup de ressources, je suis bien entourée, j’ai du réseau) pour premièrement obtenir le soutien dont j’avais besoin dans l’immédiate (aide pour la toilette, les repas, le ménage, gérer l’administratif accident-médical du moment), et deuxièmement réussir à obtenir la bonne prise en charge pour ma commotion. Ça a rajouté énormément de stress et de fatigue supplémentaire alors que j’étais déjà fragilisée.

Maintenant également, lors de ma rechute de ce début d’année: alors que j’ai besoin de repos, je dois gérer de la paperasse, des rendez-vous, de la communication d’informations avec les diverses parties prenantes qui se sont multipliées durant cette dernière année. L’augmentation de charge mentale quand on a un syndrome post-commotionnel est justement ce qu’on cherche à éviter. Et même quand on est dans une autre situation médicale, ça va jamais faire de mal de la réduire.

Si vous avez des idées géniales, des mécènes ou des sponsors potentiels sous le coude, ou si ce genre de chose existe déjà sous une forme ou une autre qui mériterait d’être développée, annoncez-vous à la réception!

2025 a été une année compliquée. Ce soir, je n’ai pas l’énergie de faire un bilan. L’envie, oui. L’énergie, non.

Et c’est tout 2025, ça: dire non, renoncer, laisser tomber, m’entraîner à accepter que je ne peux pas faire ce que j’aimerais faire. “On ne peut pas tout faire”, c’est une très mauvaise formule. Car bien sûr, c’est évident. J’ai toujours su que je ne pouvais pas tout faire. Et ça ne m’a jamais empêchée de vouloir “trop” faire, et de faire “trop”.

“Trop”, avec des guillemets, par rapport à quoi? Là est toute la question.

2025, c’est l’année où une grosse chute à ski, et une ribambelle d’autres événements avant et après, m’ont forcé la main pour commencer à examiner (et réajuster) ce repère par rapport auquel on évalue que c’est “trop” ou “assez” ou “pas assez”.

J’ai assez peu d’égards (conscients, en tous cas) pour “ce que la société attend de nous”, en tant que force extérieure. “Ce que penseront les gens.” Mais évidemment, comme tout le monde, j’ai certainement internalisé plein d’injonctions et de valeurs, dont certaines peut-être se déguisent en envies et désirs que je crois m’appartenir en propre. Peut-être. Comment voir ce qu’on ne voit pas, entendre ce qu’on n’entend pas?

Toujours est-il que je ne lutte pas contre quelque chose auquel j’ai le sentiment de devoir obéir ou me soumettre. Ce contre quoi je lutte vient de l’intérieur: ce que moi je veux, ce que moi je considère juste. Du moins, je crois, avec toute l’honnêteté et la lucidité dont je suis capable, que c’est moi. Donc c’est entre moi et moi. Entre moi et mon rapport à la vie, à la mort, vu que c’est elle qui est le repère ultime de la vie vécue.

Donc en 2025, je me suis beaucoup entrainée à dévaluer l’importance de tout un tas de choses. Le fait que je puisse me dire “c’est parce que j’ai eu un accident, je suis en convalescence”, ça aide, parce que ça me laisse croire que c’est temporaire. Que je pourrai revenir à où j’en étais avant. Oh, je pourrais, probablement. Pronostic: récupération complète. Mais je ne me leurre pas: même si à un moment donné je peux, je ne veux pas. Donc quand c’est dur, je ferme les yeux et je me souviens que c’est temporaire. Mais les compétences que j’entraine, elles sont là pour rester.

Je ne sais plus si c’était à l’Hôpital de Rennaz, quand je commençais à reprendre mes esprits, le soir après mon accident, ou dans les jours qui ont suivi, mais je me souviens très clairement m’être demandé si cet accident allait marquer dans ma vie un “avant” et un “après”. Ce n’était pas du tout clair, à ce moment-là.

Maintenant, c’est évident.

2025, c’est une année qui marquera dans ma vie un “avant” et un “après”.

This is often the question. In typical ADHD style, my difficulty getting started on something is only surpassed by my difficulty stopping something once it’s started. So, 9pm on Sunday night, tired tired tired, can I grab my keyboard and give you some news without still being up at midnight?

I challenge myself.

Mid-October, I went back to work part-time. Three half-days a week. It went OK but I was way more tired than I expected. Tired in general. Overwhelmed by trying to manage my weeks, that these three little half-days seemed to fill to the brim. It’s much better now and I feel ready for more. I haven’t had cognitive overload headaches for a while now, or at least, so few that I don’t remember them.

Months ago, I started using the Apple Journal app, because I was having such a hard time recalling what I had done in previous days, recent or less recent. Writing a few quick notes down at the end of the day has helped me keep some sort of grasp on all those days that have disappeared into the weird months of 2025. Recently, I’ve switched to Day One, trying it out as an alternative to Apple Journal. My Facebook suspension has made me cautious about locking data or content into hard-to-export-from apps or services.

I’ve also started learning Bridge. Maths and statistics, strategy and communication, fun! It’s an investment for my old days, but already enjoyable. I’ll write more about it in time. If you want to get started, Funbridge actually has tutorials that can take you by the hand for the first steps. Start with MiniBridge.

My very old cat Oscar is having a series of health issues. I treasure each good day I have with him, because I don’t know how many are left. The first part of the year saw a complete deregulation of his diabetes, which had been a smooth ride to manage until then. He was getting dehydrated, blood glucose going up and down like a yoyo, and slow but steady weight loss. We went through a long period of subcutaneous fluids, which helped a lot.

In September he came down with a really bad pancreatitis flare-up. I nearly lost him. An oesophageal feeding tube saved him. It sounds like a dramatic intervention, but it’s actually quite minor surgery, well-tolerated, and a life-saver. The main issue with pancreatitis is that the cat stops eating. Being able to feed by tube solves that problem, removes stress for everybody, allows proper administration of medication, fluids and calories. I had a short trip planned during that period, and thankfully a friend came over to cat-sit and take over nursing duties. I can’t thank her enough.

Since the pancreatitis he had been doing really good. He didn’t put all the weight he lost back on, but enough that it’s not a disaster. And his three old arthritic legs are happy for any 100g they don’t have to carry. I have been letting him out in the garden, closely supervised, of course, and he really enjoys it. It makes me happy too, to be able to give him access to enrichment and stimulation that an exclusively indoor life didn’t provide. It always made me a bit sad, especially as I knew he had lived most of his life outdoors. But he was too old and handicapped to risk it, and until recently, too mobile for me to supervise him in the garden here (he did get to go out at the chalet – different environment with less risks). The photo is of him on one of our recent outings.

Two weeks ago, though, he had an epileptic seizure. Out of nowhere. I moved my surveillance cameras around and kept an eye on him. He had a second one ten days later, just this Wednesday night. We put him on anticonvulsants Thursday evening, but it’s tricky dealing with the sedation side-effects, particularly on an elderly cat who is already mobility-challenged and wobbly at the best of times.

He still wants a lot of things (like me, hehe). He wants to go downstairs, he wants to climb in my lap, he wants to go outside, he wants to go on the sofa, he wants to teach Juju a lesson (Juju, by the way, is doing fine, but definitely overweight – I’m hoping his new diet will work out, because I’m not enthusiastic about preparing myself another diabetic cat).

So we’re still figuring things out, and crossing fingers that Oscar will be able to tolerate the medication and that he won’t have another seizure too soon. But it’s not good news, in any case. I’m sad and worried, which is normal, but that doesn’t make it comfortable. And also, apprehensive, because 2025 has come with more than its fair share of trials, and I’m aware that there is a high risk of Oscar dying in the coming months. And honestly, I don’t need that, just as I’m getting back on my feet. There’s never a good time for dead cats, but some are shittier than others. He might hang in there, of course, but he’s old enough and his health is such a fragile equilibrium that I would not bet on him being still around this time next year. He could still be here for months or more, of course, but he could also go downhill fast pretty much anytime. Loving and caring for an old animal is living with the certainty of grief to come, but the uncertainty of timing. I am very much reminded of Quintus’s last years.

I’ve never liked October-November. It’s dark, and damp, and not winter yet. It’s the in-between season. And this year, I had neither hiking, nor skiing, nor really sailing season. I did go out on the lake a handful of times, thanks to my dad who took me along. But it’s very frustrating and weird for me to have “lost” this year like that. It feels a bit like the first Covid year, you know, where we all felt there was a year missing in our lives. Only here, it’s just for me.

I’m way better but not “back to normal” yet. I have to put more effort into just “managing life”. And compared to before my accident, I’m much more careful about pushing myself. I used to push myself all the time. Now, when I feel tired, I go “oh, wait, I’m tired, how can I adjust my expectations for what I was hoping to do during the coming hours”.

A few weeks back I teamed up with a friend who also felt the need to get on top of her weekly planning, and we touch base once a week to go through our schedules. It’s been extremely helpful and is in no small part responsible for my not feeling overwhelmed by my life anymore. I’ve been knocking down admin tasks lately, blogging more, and even making some headway in much-needed tidying up and deep cleaning.

On the online side of things, I am sitting on my hands, because there are a few topics I really really want to dive into, but I know I cannot afford the time and bandwidth right now. It’s extremely frustrating. One of these topics is how to collate the things I share on the socials into daily blogs posts (I think I wrote about it in part 3 of Rebooting The Blogosphere). I think about it pretty much every day, because I share stuff on the socials and regret that I don’t have a simple way to round up the day’s shares here in WordPress to whip up a quick post with links and comments and some passing thoughts. There is a bunch of things I want to fix on the blog, too, but that will also have to wait. At least I’m writing.

I now finally have a Discourse instance up and running on a server (thanks Oliver!) and I am impatient to start configuring it and playing with it to start preparing for the migration of the “Diabète Félin” community I manage. It’s not for tomorrow, but I’d love to at least get something moving before the end of the year. I’m super enthusiastic about Discourse, maybe I should write a post about it.

But not tonight.

I’ve been writing my “quick blog post” for nearly an hour, my eyes are still tired and my brain is still foggy, so I’ll wrap things up here, go and pick up my old drugged up cat, play a deal or two on Funbridge, jot a few notes down in Day One, and read my book a bit before I collapse.

Sleep is what transports you to the next day. And the next day here is Monday.