The Aftermath of Infusion and achievement: 2 days in rest- a normal occurrence.lol.... weekly.




 Yesterday, I completed another infusion — a vital lifeline for managing my CVID. Yet, as necessary as it is, the process often leaves me drained, retreating to my bed for hours, or days of much-needed rest. The fatigue is relentless, wrapping me in a heavy cloak of exhaustion that no amount of willpower can shake.

I felt utterly rotten throughout the day, shaking, and with a pounding headache — my body protesting, my energy ebbing away with each passing hour. It’s a humbling reminder that healing is seldom graceful.

In those vulnerable moments, I was deeply grateful for my mother’s quiet care — helping with meals, offering comfort when words failed. Her presence was a balm, a reminder that even on the hardest days, I am not alone. I struggle often to work hard, and to do my infusions... and then of course, all self care goes out the window, eating, showering, you name it, when I am drained I am really drained. 
I get very afraid of telling people about this, because it isn't the "live laugh love" sort of courage people find appealing. I'm afraid of being seen as "too much" or "too negative" u then it also crosses into a strange new territory if you downplay it, people either accuse you of faking it all.. or they compare themselves to you... and it becomes a problem, because you've inadvertedly destroyed a fellow spoonie, indirectly... That's not what this blog is about, but I also won't let someone accuse me of faking a complex immune disease because I need cutting down to size for being too shiny about it either. 

This is the reality of chronic illness: moments of strength intertwined with moments of surrender. And it is in both that we find our true resilience.

Not in thinking of all we should be doing, but in the quiet realisation that we will never be great, and we will never make a difference, which should be... if framed correctly strangely liberating, since there is no point in trying too hard in life or overachieving. We shouldn't guilt ourselves out of rest, because no amount of rest will cure us, or condemn us. It simply doesn't matter. 

The energetic cost to me doing literally anything in my life, is to end up in bed, or catch another infection and be at home for days or weeks.. It's caused me to lose jobs, good normal min wage full-time, hard graft customer facing jobs.. there was one point where I couldn't do anything in life except take antibiotics at work, because I was so run down, and I had no social life at all, because I prioritised functioning on achievements, and on looking put together on the outside... as a normal responsible citizen... The more you push yourself, the more society rewards you for being "one of the good ones" and still working hard even though your health declines and your life is a mess. 

The hilarious backlash is it cost me everything anyway, because everything crumbled eventually, and I burned out... boom and bust rhetoric is a constant reality for most of us! hahaha... 

I'm also staunchly aware that someone might use my bad days as something to laugh at... in their own way, as their own motivational material.. "my life might be shit but at least I am not clare.. lol..loser" 
so I am also afraid to give someone else the satisfaction which is why I haven't posted enough negativity on here. I can though, if I have to... I wasn't planning on unearthing myself like this for others enjoyment, but I will if I must. 

Whinge too much? faking it. asking for attention. boring. negative... no one likes you 
Whinge too little? faking it. inspiration porn. fake positivity. no one likes you. whatever you say can and will be give in evidence and weaponised as to why your immune disease is made up... 
Even if your pain is real, the test results real, and your chaos... sadly real.. 

so be kind to yourself. 
cry if you need. rest if you want. 
rest if you must. 
get angry if you have to... 

but be kind to yourself, especially when the world is unkind to you, for not coping in the right way... because there is no right way... just judgement and envy. 

Clare Alexandra

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