A big black hole…

Do you have a voice in your head? Your own personal narrator. Don’t forget your purse, ooh that’s a nice skirt, my head hurts, what should I make for dinner, did I answer that email? I’ll sit down at that next bench…

A running commentary guiding you. Questions, ideas, reminders. Busy, busy always going. An echo of you, so constant that you often aren’t even fully aware of it. Still there when you need it, though. Working through options when you’re not sure which is right. Slowing your tongue before it spits out something stupid. It searches through your memory catalogue and sounds an alarm when you might be missing the danger. It’s useful. A comfortable, familiar accompaniment to life.

Sometimes that voice goes rogue. It’ll bark at the slightest disturbance. You drop a cup & you’re a dickhead. It starts warning off attacks that aren’t coming. Tells you everything you’re doing is wrong. Maybe sometimes you are able to make peace. You both pause, think again and agree that perhaps that assessment was too harsh. Deep breaths or a task accomplished might win the other you over. On other occasions the voice knows its right. All aspects of your life are disastrous and you are entirely to blame. The inner critic skewers you; drives a fresh hole through all your crap.

Black Smokey hold on white background

It takes training to win a battle with yourself. You must master tricky moves to quiet the bitch in your head. There must be people who manage it. I’ve yet to completely get the knack. My internal voice is spiky. She (I) love to find myself at fault. Guilt comes easy and in no proportion to the perceived sin. My head is well versed in all the hurtful language I rail against. Dismissing your own internalised ableism, fat phobia, capitalist propaganda is tougher than talking down some third party arsehole. Anyway, to a certain extent I have accepted that my silent commentary will always do this. I’ve learned to challenge the initial thought. Wrestle it into logical submission. Sometimes I win , sometimes I lose, but I expect the onslaught.

Which brings me to why I’m engaging in this session of blog therapy. Lately, the voice in my head has developed new habits. She has us on perpetual clueless alert. My warning siren is stuck on active. I can’t calm down. However, when I question the need for this hyper vigilance the know it all in my head has zero answers. In fact, I can’t find answers for much at the moment. When I request help my internal dialogue tells me it doesn’t know.

What am I scared of? I don’t know.

What do I need today? I don’t know.

What should I eat? I don’t know.

Who will I pitch this to? I don’t know.

Should I take more painkillers? I don’t know.

Is this good enough? I don’t know.

What do I want? I don’t know.

Did I say the right thing? I don’t know.

Am I ok? I don’t know.

I’ve been anxious & uncertain before. Decision making has always given me trouble. I’ve just never had such a blank in my head. There’s always been a conversation. Typically I’d scroll through all the things in my life that could be a concern. I see it through to the worst possible outcome & decide how I could manage that. Once I’ve tackled that I can be less consumed by the worry. It’s not a perfect solution, but I have some success with it.

At the moment, there is no discussion to be had. This is free floating anxiety ALL THE TIME. I wake up jittery. I lie in bed nervously trying sleep and I am on edge every minute in between. Identifying real worries has no impact. At the end of that process the voice in my head is still shouting panic! I’m not a stranger to unresolved aniexty. I have PTSD, it comes with this territory. I’ve dealt with episodes of hyper vigilance. I do react to triggering stimuli. I’ve been in the depths of unknowable depression. This just feels very different.

The barbed inner voice can usually be relied upon to give me something to work with. Even if my instincts are brutal, I have a jumping off point. Now everything is so vague. I’m stumbling around in a room full of nothing. This isn’t a period of great change. I am not attempting to make life changing decisions. I have no idea what is going on & neither does my brain.

Black & white image of ly looking out over a beach. Taken from behind.

Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

The Fear…

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

All that fear and all that pressure…

I’m thinking we probably have some newcomers to the world of overwhelming anxiety. Panic is a no win kind of game, but there a few cheat codes. Since I’m an old pro and a real darling, I’m going to clue you in.

Full disclosure, none of these are a cure. Anxiety is a fucker and you should definitely seek professional advice if you are worried about your mental health. However, none of these calming hacks will do you any harm & so you can totally give them a bash. They might buy you a little temporary peace or even just knock the steam off your panic attack.

Gratitude Lists

I know that sounds wanky, but bear with me. Sometimes when I’m dealing with that grinding, slow burn type of anxiety this can be helpful. I go through things I’m grateful for in my head. It can be anything. Often I’ll do the simple I have a warm house, comfy bed, not being pursued by the mob type of thanks giving. Other times I’ll get specific about factors that mitigate whatever I’m worrying about. Either way it switches my head away from catastrophising for a minute & lets me catch a breath.

Slow Sips

If you’re wholesale panicking, slowly taking small sips from a bottle can help. It forces you to regulate your breathing, which can ease the physical symptoms of a panic attack. Thus giving you an opportunity to stave off a really bad episode.

Waves of Sound

Get yourself a sound machine app. Lying awake all night feeling scared is awful. Waves, thunder storms, pouring rain are all rather soothing. This can also be helpful via earphones if you’re feeling freaked out in a public space.

Waves on Scottish beach

Play it Out

On a similar note I like to prepare playlists of songs that I know will be good for certain situations. For instance I have calming bedtime tunes, waiting somewhere stressful songs, help me do these things that need to be done lists and so on.

Child’s Pose

I know yoga isn’t everyone’s cup of tea, but it does work for me. Child’s pose in particular is very helpful for chilling my body out and making my brain stop for a minute. You can access loads of good yoga vids on YouTube. It’s worth a try to see if anything helps you feel more ok.

Repeat Yourself

This probably sounds a little dumb, but it can be surprisingly effective. In moments of panic/fear simply repeating a reassuring phrase can help. I usually go for ‘you’re ok’. The repetition and saying the words out loud has an impact.

Text ‘you’re ok’ repeated on pink & green swirly background

Hide

This probably sounds even more daft. Again, it can work. Taking yourself to a small, safe space can reduce your body’s desire to flip out. I’ve taken myself into my tiny home office & given myself a minute many a time. Being somewhere that I know no one can see me or even know I am there is great for combatting rising panic.

Dark & Loud

When the world is really too much, blocking it out us the way to go. Find yourself a dark room, get comfortable and turn some beloved music up really loud. Assaulting the senses like this aids a positive disconnect from whatever is distressing you.

Write

This one obviously works for me. Getting the terror out of your head and onto the paper/screen is a lifesaver. Something about making those words concrete rather ever growing worries is hugely cathartic. Give it a try.

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 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 in 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 is 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 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. You can’t stop time. It is entirely out with our control. Feel whatever you feel. Talk it out. Then carry right on living because it is always later than you think.

Don’t worry, my arse…

I worry. Quite a lot actually. I stress over things great, small & possibly non existent. I probably worry much more than is either necessary or prudent. That’s the nature of worrying, though.

So, I while I confess to sometimes wishing I could turn off the worrying I find it incredibly frustrating when people suggest that is possible. There are of course strategies to deal with disquieting situations, merely deciding not to worry about it is not one of them.

I keep seeing this sort of thing offered as some kind of wisdom. This isn’t wise, it isn’t even sensible. It just displays an inability to understand what worry is. If it were possible for a person to decide no to worry, worry wouldn’t be a thing.

Obviously this is abelist. Anxiety is not always rational. Many people struggling with mental illness have spiralling worries. Ranging from the practical (money, employment, relationships) to the irrational & far reaching concerns that mental illness can bring. When you tell someone they can choose to stop, you’re kind of saying their anguish is their own fault. Advising a person to just stop worrying is as pointless as telling them to just not be ill.

Setting aside the ableism it’s still infuriatingly useless advice. Let me break it down,

Do you have a problem?

If I didn’t consider the issue a problem, I wouldn’t be concerned about it. So, yes, regardless of what an outsider might think, I clearly think it’s a problem.

Can you do something about it?

If I can, the solution must still be troubling or uncertain otherwise I wouldn’t be worrying.

If there is nothing I can do ignoring or pretending the issue doesn’t exist will not help me. Plus, lets me face it, if you are facing a problem that you cannot solve it’s unlikely that you can just magically forget it.

Saying this to someone in distress is unkind. It basically translates to I don’t care. Telling someone not to worry is not a suggestion of self care. It’s dismissive. Instead, perhaps try listening. Sometimes just saying it out loud can be helpful. If you can offer practical help, do. If you don’t know what someone needs, ask. A simple ‘what can I do’ can be so valuable. A little bit of time goes a long way.