January girl…

January is turning into quite a challenge on both physical & mental health fronts. Mood dips at this time of year are predictable, but this feels like it’s edging towards more than that. Thus, I am doing the sensible thing & taking a rest.

I’ll be still be sharing other people’s cool stuff & perhaps bits from the archives. There’ll be a pause on new content. If you begin to miss me, you can find me here & here.

Black and white cat lying in back with text, paused for inner maintenance

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

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* Photography Credit – Megi Aben

May all your troubles soon be gone…

All the last minute tidying is complete. The presents are wrapped, the festive bedsheets are on & the fridge is stocked. My final festive manicure is complete & my outfit is all picked out. All that remains to be done is put my feet up for the evening before the madness begins.

Xmas tree with presents

I’m getting very excited about the big day. I’ll be at my sister’s & her little man is so into Xmas this year. I can FaceTime my other wee ones to see them open their pressies. Plus I’m a big kid and I love getting gifts too!

Xmas nail art. Candy cane stripe & holly

As happy as I am to have friends & family to share the season with, there’s always a hole in my Xmas. Being reminded of all the family fun I’ll never have with my own children is hard. Lots of people who have experienced loss struggle over Christmas. That’s why organisations like Sands & Miscarriage Association are so crucial. Sands work towards reducing still birth and neonatal death. They also provide support for those have lost babies. The Miscarriage Association aim to support those who have suffered miscarriage. They also strive to end the taboo nature of baby loss. Both do essential work with vulnerable people. If you can spare a little, a donation will allow them to continue their essential mission.

Xmas tree, heart decoration with text no foot is too small to leave van imprint in this world

However you spend Christmas I hope it will be safe, warm & filled with as much joy as you can muster. If you are missing someone this year I send you love.

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