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.

My week (ish) in pictures…

It’s been a bit up and down of late. Thankfully the highs are good enough to get me through the dips. Plus Xmas is close & I’m definitely beginning to feel merrier. So, let’s have a we round up of goings on before I get swept up in all the festivities.

Last week I had some Xmassy cocktails with my favourite man. I took a trip to the very rainy seaside to do some giggling with my lovely Lisa & her equally lovely boy. I checked Edinburgh’s pretty lights on the way home. Of course I spread a little #projectpostit wisdom as I went.

I did a whole bunch of rascalling with my middle nephew; including cinema trips & fun in GoMA studio. Hung out with all three boys together & did some excellent FaceTiming with my big muffin. We got started on all things Santa & I even wrapped the first of the presents.

This week involved another Edinburgh visit for an exciting meeting. Followed by a lost bank card, lots of stress & some big glasses of wine with my favourite man to save the day. It was a perfect winter day; freezing cold, but crisp & dry. The light was dreamy.

Back home I lost a battle with some frost & my driveway. Snuggled with my puss cat & put the tree up.

I had a little sister time. Got seasonal with my nail art & snapped all sorts of things that took my fancy.

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

Easy ways to support your fat friends…

I think most people want to be loving & supportive of their friends. Whenever I discuss body positivity (online or in person) most decent straight sized people are mostly in favour of the theory. I’m often congratulated & told it is important to spread the message. I suspect these people would consider themselves supportive of their fat friends.

Whilst I agree that they are well intentioned & aim to be supportive I still hear the same complaints from the fat friends over & over. It can be really hard to address these face to face. So, here is a handy to guide to help thin folk support the fat people in their life. I’m starting with the basics; 5 easy steps that anyone can manage.

Don’t tell me you feel fat.

Fat is not a feeling. When you describe your feelings of inadequacy or unattractiveness as ‘feeling fat’, your opinions on fat are very clear. In addition please don’t complain about how fat you are when you are half my size. What I hear is that you think I am repulsive.

Don’t include me in your diet talk

Diets don’t work. That is scientific fact. Studies show time & again that almost every diet actually results in long term weight gain. I believe that diet talk is toxic. I can’t tell you what to do with your body, but please don’t involve me in it. I don’t want to know how many calories are in my or your meal. Keep your weight goals to yourself. Food has no moral value, you’re not being good when you order a salad. You can follow whatever regime you please without telling me about it.

Don’t expect me to always be ok with trawling around shops that don’t carry my size.

I can’t tell you how many shopping trips I have been on where there was no chance of me buying anything. I’m not even sure that most straight sized people are even aware of this. I’m not saying I’ll never help you pick out a new frock, but please try to be aware that it isn’t all that much fun for me. There are limits to how much time I want to spend sitting in waiting rooms holding your coat.

Don’t laugh at/make fat jokes.

Whether it’s a character in a film or a disparaging comment about that bitch you hate at work when you include their weight it stings. When you find Thor in a fat suit hilarious you’re laughing at my actual body. If you can’t criticise Trump without mentioning his weight you are telling me that him being fat is part of what you dislike about him.

Don’t comment on weight loss/gain

The aim of my body positivity is reach a point where body size is neutral. I would dearly love for my bulk or lack there of to just not matter. With that in mind, please don’t comment on my weight fluctuations. Weight loss is not inherently good. Any changes may be unintentional. They may not even be benign. The size of my person requires no discussion. In the same vein don’t expect me to congratulate or castigate anyone else’s weight change.

I know some readers will be thinking this is all very demanding. No doubt the, we can’t say anything anymore mob, will have lots to say about my suggestions. Remember, though, they are only suggestions. No one can stop you from saying anything you feel you must. I’m simply letting you know that when you do, it hurts. It comes down to respect. The choice is yours.

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.

It’s later than you think…

I think it’s universally acknowledged that getting older is a wee bit scary. As one approaches those big milestone ages it is hard not to ponder the big questions. 39 is frightening mainly because of its proximity to 40 & all that entails.

I remember being worried in the run up to the big 30 too. Mainly because I felt like I wasn’t where I had imagined I would be at that stage of my life. That little measure of fear probably helped in the long run. It helped me make some needed changes. My thirties have been far happier than the preceding years. I believe what made that possible was time. I had time to think and plan and manoeuvre.

Ultimately, though, I’m approaching 40 still missing the crucial piece of my puzzle. However, this time I am very nearly out of time. My options are ever shrinking. That is frightening on a whole other level.

I sometimes feel like the proverbial guilty feminist when I have this conversation. Fear of ageing is often assumed to be about vanity. It’s thought silly to worry about grey hairs or crows feet. It’s assumed the desire to stay young is about adherence to sexist beauty standards. Or if it runs deeper the biological clock is referenced in demeaning tones. Ageing childless and/or single women are often perceived as desperate or pathetic. I suspect much of this is internalised, but I had to get these messages somewhere!

Balloon with sorry about my internalised misogyny

Where am I going with this? I suppose I just want to say it is ok. Things become a cliche for a reason. Ageing is scary. Whether that is because you are worried about physical changes, not achieving goals, your own mortality or a all of the above. It’s ok. Most folk struggle a little with change. It’s perfectly understandable to feel uncomfortable with the alterations you see on the mirror. It’s fine to be concerned about the irrevocable biological changes that age brings. Knowing that some opportunities have passed you by can be hard to accept. The unstoppable nature of the passage of time can be alarming.

In many ways age is just a number. Nevertheless, ageing does have concrete ramifications. It isn’t anti feminist to accept or care about them. A big part of the significance of our appearances is routed in living in a patriarchal society. It isn’t merely a shallow obsession with attractiveness; women’s ageing is not as viewed sympathetically. There are real life implications beyond aesthetics. Career prospects, financial considerations, medical and fertility issues are a big deal. Even if you just really lovely your hair and don’t want it to go grey, you’re allowed to have a wobble about that.

ly looking in mirror sign towel around body and hair

In the end the thing that makes it so worrisome is also what helps me deal with it. You can’t stop time. It is entirely out with our control. Feel whatever feel. Talk it out. Then carry right on living because it always later than you think.