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

Just give me a reason…

I’m lost. I’ve spent this year trying to reposition my future & navigate the present. I have tried new things, met new people, considered a million & one possible permutations of the next 30 years. I remain astray.

I’ve always had an ultimate goal to strive for. I had one non negotiable role. Motherhood was at the centre of all my plans. It was a reason to do better and the motivation to persevere. I worked so hard on building a safe, comfortable nest. I fixed all the parts of me that could be corrected. Found a way to accept the parts that couldn’t. I believed I had a purpose. I wanted children powerfully enough to force myself into viability.

When it became clear that it wasn’t going to happen I was destroyed. I knew I’d have to fight hard to create some other life. I was aware it would be painful, but I really did believe I could lay a new path. Life’s been a fucking journey so far, but I somehow eventually arrive at ok. I thought I could do it again. I told myself I needed time to grieve, to heal, to process. Then I decided I must push a little. Or a lot. Get to the next step professionally. Say yes to things that scare me. Date fun people, keep an open mind, pay attention to what makes me feel good. If I keep moving I’ll stumble upon my new direction, right? Wrong.

Happiness ahead in lights

11 months of forcing myself to breath. Smiling, rascalling, writing, resting, networking, researching, grabbing hold of anything that sparks any kind of anything. Honestly, it is getting harder. There is no deeper meaning to my efforts. I’m proud of work success. I am grateful for all my gorgeous people. I have love and opportunity. My life is mostly in colour. It’s just very hard to keep the grey from seeping in. Even harder to convince myself it adds up to a reason for being.

I’m hollow with zero ideas of what I should be full of. I’m still at the reminding myself of reality stage. Checking myself daily. I don’t need to remember that gorgeous Swedish name because I won’t be naming anyone. Reading that piece on delayed cord cutting is futile. I should get rid of the paint for the spare room. Forget all my child rearing dreams & schemes. Thinking of this stuff only causes pain, but I have nothing to replace it with.

Search lights fanning out of darkness

I don’t know what to do. I’m not entirely sure I even know who I am anymore. One day at a time is good and well temporarily. It does not hold up as a long term protocol. When everyone else takes their children home there has to be something that makes my life feel significant. I need a reason. I need more.

It’s a me, myself kinda attitude…

Self care is a phrase that makes me boak. It has so many bullshit connotations that I just can’t be doing with. I’m not interested in the healing powers of green tea, crystals or turmeric. A cup of tea and a chat won’t fix my crazy head. Neither will congratulating myself for brushing my teeth. If any of that works for, knock yourself out, I’m genuinely happy for you. It all just leaves me with a bad taste (literally in some cases) in my mouth. However, I do believe that you have look after yourself. It’s important to pay attention to the little things that make a difference to your day/life. And every now and again you have to go BIG.

Hotel do not disturb sign

That’s exactly what I did last week. I’ve been walking the tightrope of mental & physical health flares. I’m tired, I’m sore, I’m sad and with the arrival of my 39th birthday I’m old too. I was in need of a treat. So, I gave myself a 5 star escape.

I booked a couple of nights at a boutique hotel in my city. Checked into my beautiful room and checked out of reality for a few days. I told no one. I drank champagne cocktails in the epic roll top bath. Ordered room service and watched old movies in the gigantic bed.

Hotel room with roll top bath Grand staircase and stained glass window, dining room with chandelier and champagne cocktail

It did me good to dip out of my real life. It hasn’t solved any of my problems, but man alive was it good to have some respite. It also felt really amazing to be able to do a lovely thing for myself. It’s great to be treated by others, but there is a deep satisfaction in giving yourself something you need.

ly looking in mirror in white hotel robe, ly soaking in roll top bath

My advice would be less ‘self care’ and more taking care of yourself.

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

My week in pictures…

I’ve been a bit stuck in the doldrums. Sometimes when my mood takes a dive I can get overwhelmed and struggle to get anything done. To tackle that I decided to make a concentrated effort to take time for myself; focusing on things that release pressure and make me feel good. It has been successful strategy. A treated & rested me has managed to get more on top of things.

I started last week with a wee spa escape. I grabbed my Mum & Sister and embarked upon a relaxing break in a Dundee. Of course we let the Baba crash our girls trip.

We had a lovely time luxuriating in the spa and kicking back in our suite. We checked out the stunning V&A. Indulged in some delicious food and had a tonne of carry on. I’m so glad my family are such loveable maniacs. We always have so much fun together. It was bliss for me to spend so much time with the boy. I love getting to do bedtime, reading him endless stories and hearing him call out my name when he wakes up. Little ones are the best medicine.

Plus size woman posing at v&a

Dress – Monki

Shirt – Boohoo

Tights – Snag Tights

Various v&a Dundee Family snap shotsVarious Dundee

I arrived home midweek and got stuck right into my outstanding ‘to do’ lists. After a few days trundling through housework and editing I was ready for something lighter. Diversion came in the form of the wonderful Strathaven Balloon Festival. I’ve always loved hot air balloons. Unfortunately the rides book out weeks in advance, so I didn’t get a chance to take to the skies. Good times were still had. Someone turned the sun back on for us this weekend and we got a scorcher.

We had a go around the boating pond before a little bouncing.

Baby on bouncy castle

Watched people fall from the sky and got up close with some owls.

Sky diver with open parachute

Did a bit of colouring and then the boy got to try out a mini balloon ride.

Children’s hot air balloon ride

Finally it was time for the star of the show. They were worth the wait. Red hot air balloon in the sky Hot air balloon in riding above trees

I tried to beat the heat with barely there t shirt & the cutest crop top. I still felt like I was a million degrees, but at least I looked pretty cool.

Plus size woman in tent wearing maxi skirt & rainbow crop top

T- Shirt – Pretty Little Thing

Crop top – Wilde Mode *

Skirt – New Look

Sandals – Next

* Brand Ambassador