These past few weeks have been exhausting.
Work is DEMANDING to say the least – if you’ve ever tried to keep three thousand plates spinning simultaneously then you might have an insight into what it means to manage a huge program of work and everyone’s expectations at the same time. It’s ALOT.
But this is just a side piece to the real source of my exhaustion… Surprise! It’s my auto immune system!
One of the more challenging aspects of living with invisible chronic illness is that everyone around you just forgets that you have something major going on in there. My Psoriatic Arthritis causes my auto immune system to literally attack my own tissues like they’re an invader. While this is helpful for dealing with viruses and other bodily threats, my body being on constant alert and attack ‘in there’ takes away a huge amount of energy that used to fuel my life ‘out here’.
Let me break it down for you…
Everything hurts all of the time.
By everything – I mean everything. Every joint, every muscle, every bone, every fibre of my physical being. All day, every day. The amount of hurting changes from day to day, and moves around to different pain points, but it’s always there, a friend you didn’t want or ask for who just inserts themselves into your life by sheer force of not knowing any better.
Living with this is exhausting. Physically, emotionally and mentally. It never ends, it never will end and will likely get worse as time goes on. That is a big thing to contemplate – and having connected with some other people who live with it too – I am one of the luckier ones – for now.
I need down time to survive.
For me this equals silence and zero expectations. And somewhere comfortable and warm (or cool), like my couch and/or my bed, for hours upon hours until I am fully replenished and ready to be with all of that pain again. This is space I used to fill with performing for and pleasing other people, but chronic illness makes you selfish in the best possible way.
I have zero capacity for excess emotional labour.
This is one of the harder parts of coming to terms with chronic illness. I have always been generous in supporting fellow humans in whatever they might need from me. What I found over time, is that I rarely, if ever got that same support back. I observed this, and decided to shift my perspective on who I am for others. This is the minimalism part folks!
My preferred mode of operation is direct, decisive and devoid of any emotional baggage. I really don’t like having to fill in the blanks about what people do or don’t want from me. If you need something – ask. If I can help you with it – I will. If I can’t then that’s it. End of story. There’s no judgement there, it’s just facts.
Chronic illness forces you to make space for your own healing and needs above anything or anyone else. Of course, the humans I hold dearest will always have my support as much as I’m able to give, but that’s a very select list.
I really need a bum rub. All. The. Time.
This is true – but also one of the odder needs I have on a daily basis. It’s actually my spine that causes this – it’s classic PsA. My hips, glutes, lower back and all the joints in between get so stiff and ‘grumpy’ and the only thing that helps is a high pressure bum rub or pressure point massage. Mr is very accomodating of this, but unless he gives up work to become my full time bum masseuse – I need some other plans.
I actually have a bunch of contraptions for this very purpose – a nobbling stick, a spiky ball, a hard rubber double ball and a vibrating massager which is very loud. Plus all of the heat bags and cooling mats to manage the various pains and flare up flushes that come with this major thing I have invisibly going on ‘in there’
My brain doesn’t work the same way it used to.
This is the hardest part for me to come to terms with. I can’t remember small details about anything – at all. Big concepts? I’m your girl.
My brain fogs out between 3pm and 5.30pm without fail, to the point where I lose words. It can also happen just during the day accompanied by a flush of heat that is super intense.
Everything I need to do for someone else must be written down with a hard deadline or I won’t remember to do it.
I hate it. But I’ve had to adapt and find ways to be present and accountable despite the demands of the monster within. It’s an ongoing challenge, which I don’t have all the answers to yet.
And yet… she persisted.
A big lesson of ‘unbecoming’ is that being forced to strip away all of the excess in your life because if you don’t it will topple you actually reveals who you are at your core.
I am direct, compassionate to a point, able to adapt and experiment to find solutions.
I need space and time without demands to allow my creative self to sit with my own thoughts.
I want to direct my energy to the things that produce the highest value without all of the noise.
In the end, for all of us, it’s really about finding clarity in the truth. It really will set you free if you’re brave (or tired) enough to face it.