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.

Give the day a chance to start…

It’s been a fairly standard day. I got some writing finished, sorted a little admin & did a food shop. No exciting hijinks. Nothing horrible either. Why then do I find myself feeling so overwhelmingly sad?

An hour ago I was just getting on with the daily grind. I wasn’t jumping for joy, but I was fine. From one moment to the next my equilibrium vanished. For no discernible reason I am flooded with melancholy. It is one of most baffling aspects of my mental illness. It extends beyond feeling miserable. My inability to comprehend what is happening leaves me powerless to combat it.

Control is a big thing for me. I think, because there have been major parts of my like that I have lacked significant sway. That leaves me very uncomfortable with the uncertain components of my mental health. It is very frightening to know that my mood may descend at any moment. It’s even more alarming when I don’t know why. I can’t tackle a problem when I cannot identify the cause.

Moon in cloudy sky

That leaves me just trying to ride out the low. With no clue as how long the trip may last, it is hard not to lose hope. It’s hard to compute how much of a hold these periods take on me. This isn’t deepest, darkest despair. It’s what I think of as everyday depression. More grey than black. A persistent ache rather than unbearable pain. Yet its unpredictability looms large.

So, how do I combat the urge to believe there isn’t any point fighting a battle when I know I’ll lose the war? This is good a starting point. I write about my crazy head in an effort to exert dominion over it. I try to talk about it or at least just label it out loud. Not having to pretend that everything is a ok can help. I remind myself that I can and have exited these dips. There is colour in my life waiting to reappear. Of course I take my meds and then I just hold tight.

Long term mental illness is a slog. It leaves you no option other than to dig in & get dirty. My heart goes out to anyone else who is stuck in the trenches.

Autumn leaves in street lamp

You’ve got stuck in a moment…

You know how they say you can’t smell your own perfume, so you have to careful now to wear too much? I feel a bit like that about my body. Specifically, my scars.

I’ve lived with the damage for so long that I cannot judge how severe it is. Mostly, I don’t think about my scars at all. They’re not a consideration in dressing anymore. I’m not ashamed or embarrassed of what they may signify. I usually find any rudeness engendered by my patchwork skin says more about the observer than the observed.

However, every once on a blue moon I have a moment. Often it’s my own doing. I catch sight of my reflection at an unusual angle or change under different lighting and I’m shocked. Horrified maybe. Not so much at my appearance as the fact that I did this to myself.

More rarely it’s as a result of another’s extreme reaction. A gasp or frightened look stirs much more than judgemental comments. When my battle scars scare others it stirs the old guilty feelings.

Sun shining through trees

In either case it is doubt that knocks my confidence. I find it impossible to determine if my body is hideous or merely slightly disfigured. Without a clear grasp of what I have done I feel adrift. It takes me back to my days in the self harm trenches; never knowing how serious a wound was. Unable to grasp onto any equilibrium.

Am I a dramatic fool over nothing or inflicting horror on innocent parties? And which would be worse? The uncertainty shakes me. I feel an imposter. For all my proclamations of body confidence there are times when my self inflicted seams run deep.

I’m stuck in a moment right now. I fight the urge to hide. Steal myself against thoughts of splitting those seams open. It’ll pass. In the meantime I’ll have the long sleeve weather to regain my surety.

Blurry lights through blinds

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

I’m longing for your heartbeat…

Saturday is my due date. Or would have been my due date. I’ve been so scared of its approach because I have so many unresolvable feelings.

I tried not to know my due date. I had asked in previous pregnancies not to be told because I knew the knowledge of the first one haunts me. I got a little too confident after I heard a heartbeat & let the midwife tell me. Then I made the mistake of setting my calendar to that date. Now I can never forget it.

It is sad & overwhelming for all the obvious reasons. I haven’t processed this grief. In that sense Saturday is just like every other day. I’m always thinking about this in some sense. Be it specific memories of the miscarriages or thinking about all the memories I’ll never make. Mostly, I feel lost.

Project post it

I am not entirely sure who I am anymore. I haven’t ever envisioned a life without children. I don’t know what to do now. I have to accept that my future can only ever be not quite enough. Moreover, becoming a mother has been my driving force. It’s the dream that kept me going when I wanted to give up. It was my inspiration to get stable & pushed me to pursue writing.

It’s very frightening to have your reason to fight melt away. It’s even harder to grieve the loss of this baby when it is such a crucial part of my big picture. I don’t know how to let go of that heartbeat.

I’ll be 39 next month and I have not a single clue about how I fill the rest of my life. A huge part of my identity was a mirage. I have a new reality. I don’t know how I learn to live in it.

Heartbeat on red background

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.