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.

I got issues, you do too…

Staying home is getting hard. My reasons for struggling may be different to yours. No doubt there will always be someone in worse situation than all of us. It’s still ok to feel whatever you feel. We’re living through a crisis that no one was prepared for. It’s perfectly normal to have no idea how to deal with such an unprecedented set of events.

A badly managed pandemic is going to mess with our heads. There’s no getting away from that. Aspects of this catastrophe might compound existing mental health issues. Such large scale uncertainty & fear may trigger symptoms in those who have never experienced them before. Please be gentle with yourself. It is totally normal to struggle with mood in extreme circumstances. It is not your fault that you find this overwhelming. It is scary to feel so powerless. Even more so to be dealing with such acute emotions in completely alien circumstances. You are allowed to be a mess. This shit is tricky, but it’s not forever.

Whilst we’re in the thick of it, it’s important to look after ourselves. Bin all the shoulds. Whatever gets you through the night really is alright. If you need routine, create it. If video calls & comfort food are your heart’s desire, do it. There are no rules. Complete your magnum opus or have a lot of long lies. Both are reasonable reactions. As long as you’re not endangering yourself or others, it’s all good.

Pale legs with green tattoo lying in bed

If you’re starting to find that you don’t know how to handle the ‘new normal’, I have a few pointers. I’ve had years of wrangling a crazy brain and unruly body. It’s left me quite well equipped for societal disaster.

It’s my experience that taking care of everyday practicalities can relieve some stress.

  • Make a budget. If you know exactly what’s coming in it is easier to juggle what’s going out. If there are bills you will have difficulty with contact companies ASAP. Most big organisations are offering payment breaks, reduced payment plans etc at the moment. It feels so much better to not have the worry hanging over you. Check what financial aid is available to you during this crisis. There are various government schemes that might help make ends meet.
  • Plan in advance. Check each day for shopping delivery slots. You can usually have two booked at a time. Some supermarkets offer priority to people most vulnerable to covid 19, it’s worth checking if you qualify. I always buy some food that needs little preparation in case I don’t feel up to cooking. Speak to your GP about how to best request & collect prescriptions. Don’t wait until you need your medication, running out is incredibly stressful. There are delivery services available for people who cannot leave their house.
  • Make lists. I love a list. When everything is swimming around in my head it feels hectic. Order resumes when I can see what I need to do on paper. Plus ticking things off is very satisfying. I make a list for each day. I spread housework, life admin & work throughout the week. Leave time to rest & between hated tasks. Prioritise what’s most important for each day. Do not freak out if you can’t get everything done. Focus on the essentials for that day. Dishes in the sink won’t hurt you. I usually make separate lists for things I need to buy, calls I need to make & appointments I need to keep. Our current situation limits those things somewhat.
  • Permission to deviate. Let yourself scrap it all if you really need to. Just don’t ditch it forever.

Most of all, be kind. Indulge in whatever makes you feel good. Eat the treats. Send yourself flowers. Drink the tequila. Keep talking about how you feel. Ask for help if you need it. Everyone is dealing with their own variant of yuck; let’s try to take care of ourselves & each other.

Margarita in cocktail glass with lime wedge

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.

Still after all this time…

It’s Friday night. I’m watching Bridget Jones’s baby (again) after which I shall go to bed & continue re reading Persuasion. Probably a pretty nice cosy night in, but Bridget & Austen are red flags for me.

I always read Austen when I feel wobbly. I find the manners & gentle wit soothing. Whenever I read about Elliots or Dashwoods they seep into my dreams. Georgian heroines winning happy endings is a definite upgrade on what’s usually swilling around my subconscious. Bridget Jones offers a similar, but slightly more bittersweet comfort. Echoes of Austen, shadows of my own experience. Sadly, sans the fairy tale ending. They amount to my mixed media version of a junk food binge.

I love some good old fashioned romance, but my own Mr Darcy is not what I’m longing for. I don’t know that I’m actually cut out for the conventional vision of love. I’ve given it some good tries; satisfaction never abounds. Perhaps what I miss is just more innocent times. Younger me believed in things I can’t muster the faith for anymore. That is both freeing and, well, sad.

I feel like I’m standing on the edge. I can’t see what lies beneath. The uncertainty scares me. I’m grinding through the days. Fighting the urge to stay in bed. Backing thoughts of blood into corners. I’m teetering on the brink of that big blank something.

Maybe this is how you feel when you’re prone to crazy and about to turn 40. Or perhaps this is just always going to happen. Remission & Relapse. Almost sounds like a novel a 21st century Jane Austen would write. She’d probably find a way to lighten to the mood. Alas, I lack her talent.

Instead I’ll borrow some well-being from her work. Mansfield Park can follow Persuasion. I might even dig out the Bridget books too. I’ll take light relief where I can get. Hold my nerve. I’ve survived steeper falls than this. There’s always safe ground waiting.

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

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.

All by myself…

I’m an ‘independent woman’. I’ve lived alone for basically my whole adult life. I take care of myself (I pay folk to do the manual labour, but still). I enjoy my own company. I can usually get by without too much hand holding.

I have, however, recently become aware of an infuriating blip in my self sufficiency. Since becoming single again I have noticed that I can’t go to the cinema alone. It wouldn’t be a big deal, except for the fact that I love seeing films on the big screen. I used to go weekly with my sister, but the advent of her baba has ruled that out. Almost all of my friends also have little ones. The few that don’t, live in different cities. Obviously, I no longer have a boyfriend to view blockbusters with & the cinema isn’t really a good date place. Which leaves me with, go alone (until I line up a cinema buddy) or don’t go at all. Neither of which felt appealing.

With each passing film that I had really wanted to see I have grown more frustrated with myself. Why can’t I go to cinema alone? I can’t think of much else that I wouldn’t do alone. I’ve travelled solo and eating out by myself doesn’t bother me. I have no problem sitting in bar or cafe, whiling a away an hour or two in my own company. I love living alone, to be honest I think it’s my preference. I attend scary medical appointments and pursue a variety of opportunities alone. Sitting in a darkened room staring at a screen unaccompanied shouldn’t be an issue. I can handle big grown up things without a partner. Why can’t I tackle something so trivial?

The only thing I could come up with is some weird insecurity about being judged. Would people think I don’t have any friends? Are strangers going to think I’m a loser? The obvious answer to these questions is who cares! I’ve never given much credence to the opinions of randoms. I’m not sure why I would start now. Yet, the anxiety persisted. There are of course lots of things that I felt worried about doing alone. Loads of occasions when I required back up or missed an event because I couldn’t face a crowd without a buffer. Whilst, not ideal, I can accept that as part of life with mental health difficulties. I couldn’t, though, make myself ok with just giving up a thing I regularly enjoy.

So, to utilise a cliche, I faced my fears. Full disclosure, I made it really easy. I picked a 10.30am screening when the cinema is practically empty. I also booked my ticket online. Thus minimising the amount of actual person to person contact I had to engage in. I did have all those negative thoughts running through my head. I did it anyway.

I can’t say that I was aware of anyone paying attention to my solo status. Note to everyone, hardly anyone cares about what the people around them look like, wear, are doing & so on. For the most part we’re all too busy dealing with the nonsense that’s going on in our own lives/days/heads. In short, if at all possible, do the thing. Don’t give yourself a hard time if you can’t manage every thing, but at least attempt anything close to manageable. It feels really bloody good to meet even little challenges.

My first me, myself & I movie was Long Shot. It’s not a classic rom com, but it is cute. I find Rogen’s charming outcast bit pretty attractive & there were enough feels to keep me interested. Definitely not a bad way to spend a Monday morning. Oh & I won’t have to see a superhero movie next time. Single life is actually pretty good.

Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

Make it easy on yourself…

2019 has barely gotten going & it’s been rough already. In a matter of weeks I have lost my baby & my boyfriend, which is less than an auspicious beginning. If I sound flippant, I’m not, I’m just trying very hard to put one foot in front of the other.

The demise of my pregnancy is devastating. My relationship’s end is sad, but the right decision and that’s about all I have to say on the topic. I find myself approaching the year (and my life) alone again. Being single hasn’t ever worried me all that much. I’m definitely not scared to be that kind of alone. Childlessness on the other hand, terrifies me. What do you when you’re facing your biggest fear? I haven’t a fucking a clue.

#projectpostit

For the time being I have taken the clichéd approach of one day at a time. I’m trying not to spend every day at home in my jammies (there is however a lot of crying on the sofa). Functioning is a struggle for a multitude of reasons. Primarily, I am exhausted. I’m always tired. Add even less sleep, the effort it takes to contain my anger at life itself, the fact that I will not stop bleeding, so despite the blood transfusion my haemoglobin level continues to flag and you get extreme fatigue. Having a different emotion every 5 seconds is tiring. Battling (& often failing) to contain the tears is wearing. Breathing & washing & conversing & not screaming is all taking gargantuan effort. The truth is I’m not managing very much. I’m practising being ok with that.

Blood transfusion, Rose wine, snuggling cat, reading baby

I recommend spending time with people who don’t expect too much of you. I’m giving priority to anything that give me comfort; my little people & potatoes pretty much have that covered. Hot baths have featured heavily as has ‘fake it ’til you make it’ make up. There was one afternoon of day drinking with a lovely friend that actually helped a lot, but not something it would be wise to make a habit of. My purring cat is a godsend. I’m reading, sleeping whenever I can and endeavouring to be gentle with myself.

ly h Kerr

I have no clue how to tackle the overwhelming sense of guilt. Chipping away at how ‘not fair’ this is may well take the rest of my life. I’m focusing on the small stuff. Giving myself a pass on the growing mountain of washing, the ideas that go unpitched and being awfully rude to the person who called about my non-existent road traffic accident. I find it harder than you’d imagine to let that stuff go. Being hard on myself comes easy. i have learned that when life gets you on the ground it’s worth tackling the instinct to kick oneself whilst already down.

Sunset

A central part of your mind’s landscape…

Are you respectful? Do you try not to hurt other people’s feelings? How often do you reassure friends that they have done a great job, tell them not to be so hard on themselves? Almost everyone manages these things & more. Most of us know how treat others kindly. We’re all delighted to be our loved one’s cheer leaders. So why do we find it so hard to be in our own corners?

For a long time I thought my negative self talk was a rare thing. I was battling severe mental illness & I assumed the cruel way I addressed myself was justified. I didn’t really speak about that abusive voice in my head outside of therapy. I did CBT, compassionate mind training, EMDR and a variety of other therapy techniques. Regardless, I still talk to myself in a manner that I would not dream of confronting others. Yes, this is part of my mental health problems, but I’m realising it’s also really common.

I am not alone in berating myself. In fact, I think to some degree or another, we all do it. My problem is keeping it under control. I can spiral from ‘that was daft’ to ‘I’m utterly useless’ in a flash. I am aware that haranguing myself in this way is damaging. I know it plays into other aspects of my poor mental health; it lowers my self esteem, leads to second guessing & most dangerously makes me feel like I should punish my incompetence.

Lately, I have noticed a lot of public discussion on this topic. It has become clear that women in particular fall prey to negative self talk. We undermine ourselves. We judge ourselves not good enough. I’m wondering why.

Is it a side effect of our culture? There’s a constant onslaught of just keep grinding messages. Everyone has a side gig. Many women are trying to juggle careers & motherhood. We’re all trying to fulfil multiple roles. All the while being bombarded by media images of perfection. Is this why we fall short in our own estimations?

I’m not superwoman. None of us are. I have learned to cope with lots of aspects of mental & physical illness. This one I cannot seem to conquer. My first thought in the face of almost every problem is ‘this is my fault’. Although not in such polite terms. I can take a part the situation logically and prove that I am not always to blame. Intellectually I can believe that I’m not the cause of every misfortune, but I can’t feel it.

As I’ve said I have received significant psychological intervention. I know all theory behind the skills that are supposed to combat these thoughts. Somehow, I remain immune to the entirety of it. So, I ask you, what do you when that horrid internal voice pipes up? I’m really asking & I am absolutely open to suggestions.