Easy ways to support your spoonie friend at Christmas…

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.

Blue, I love you…

Dear Son,

Today has always been hard, but this year is worse. I always thought I’d give you siblings & they would help remembering you to be less painful. It never occurred to me that I would be reliving your loss over & over again. I hope they’re with you. I wish you were all with me. I’ll always love you.

Love

Mum

Sapling in moonlight

Words are (not) flowing out…

You may have noticed a down turn in blog activity. I’m struggling with a little writer’s block. Or big one. Even whipping this up is more tricky than I’d like.

I think my chronic indecision is the problem. I’m wrestling with a couple of Uber decisions and a whole host of related little ones. Trying to make all those choices correctly is eating up all my headspace. I am a tiny bit paralysed on the creative front.

Bear with me. I’m hoping I’ll the words will flow again soon.

Truth will mess…

I’ve scaled back my ‘social engagements’ of late for various reasons, meaning note worthy outfits have been sparse. If I’m not in my jammies I’m doing medical nonsense or carry on with the little ones. High fashion has not been my go to.

Upping my #ootd game on my mind I planned something cute, did my hair & painted face. Then I made the stupid mistake of waiting until the end of a baba filled day to take any pictures. The rain wrecked my hair, I look frazzled and I’m really not loving how my arms look. I was going to abandon posting this look, but then it occurred to me that this is life. Flabby scarred arms, crumpled clothes & tired everything are reality. All the things you do to make the mess are worth more than the perfect picture anyway.

ly h KerrBaby playing

Close up eating broccoli ly h KerrBabies lunchingly h kerr rumpled

T- Shirt – Forever 21

Dress – Hearts & Rose

Shoes – Primark

All I can say is I’m breathing…

PTSD is a persistent foe. You can make progress & start to think maybe, just maybe you can actually defeat this bastard, but it knows you think that. 

It’s waiting for you to relax your hyper vigilence. The moment you begin to let go of the breath you’ve been holding for 17yrs it will suck it in & grow.

Folks in your life see you gaining strength & think you’re better. There is no ‘better’.  There is managing ,

coping,

trying to live,

daring to live?

The good days can start to stack up. You can feel a safe distance from the horror, but you can never be sure. 

You can never be certain that a flashback won’t stun you like lightening. 

And stuck in that hot, white memory you could loosen your grip on the here & now.

The relative calm & safety could be shattered. Perhaps only for that instant. You could be lucky, those smells & fears could melt away. Current achievements or delights may well wash over you. It’s possible. That happens. 

You’ll make plans & take steps. But you’ll always be looking over your shoulder. The knowledge of the cruelty of your own mind will keep you rigid.

Because lightening does strike twice & thrice & ever & on.

With every thump of your heart you know you’re only one more squeeze from disaster. Where little sleep becomes none. The crazy creeps out from behind all those positive walls, it brings terror & tsunamis of grief. 

And the pills don’t work

Or Dr’s 

Or the life jacket you had to make with your bare hands. 

There is only one way to row to shore & it’s brutal. It’s hot blood dripping from your fingers; slippy yellow fat & an uncontrollable urge to cut a little deeper. 

Bleed a little more 

Wrapping up the unthinkable pain in the easy hurt of butchering yourself. 

This illness is being  awake in the night & writing so you won’t do. It’s ignoring the destructive comfort because you so desperately want this new, real life. 

And, yes, all those yous should be I’s. 

It’s my past, my pain, my ongoing battle for a future. 


Listen, I’m a really perfect song.