Last week I headed north for a wee break by the sea. Our cottage was perfect. Exposed stone walls, cute nautical touches & the most beautiful view.
My nephew was along for the ride, so I needed cute unfussy clothes that allowed for much carry on. I also had to account for the crazy heatwave. First thing in my suitcase was this adorable skort that I’ve just bought. I’m not usually a shorts girl, but I really love the teenie skirt/short combo. It was ideal for early morning shenanigans with the rascal.
Skort – Simply Be Vest – Primark (men’s) Cardi – Handmade by my Mum Sandals – Pillow Slides Glasses – Where Light
For our trip to Stonehaven I opted for this polka dot dress. It’s super light and easy to wear. Whilst still offering coverage to prevent burning in the sun. The wind was blowing so you can’t see just how cute this dress is. You’ll have to trust me that it has a lovely shape. Oh & pockets!
Dress – Gift Glasses – Where Light
Finally for a blowy day at St Cyrus beach I opted for this trusty jumpsuit. Again, it’s super light and easy to wear. I added the cardi later in the afternoon when the wind got up. When I fancied a paddle I went old school & tucked my jumpsuit in my knickers!
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.
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.
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.
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.
‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.
Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.
What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.
And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.
When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.
Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.
While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?
The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.
If someone in your life is suffering without help you can contact your Mp & express your concern.
Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.
Stop voting for people who are actively defunding our health service.
Be proactive. Ask loved ones what specific help you can provide.
Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.
Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.
We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.
I love supporting small business & independent makers. When I went on a little treat splurge last week I hit up some vendors I’ve been admiring on Instagram & I thought I’d share my treasures.
I’ve tried various symptom trackers and all have fallen short. Be they apps or physical products they never seem to grasp what I need. So, discovering a collection of trackers/planners designed by a person who is chronically ill themselves was a relief. These products give me the space to personalise & encompass all my varied symptoms. They also understand the kind of things I want to keep track of. Impractically Imperfect know all of that. Plus they get that I need it to be easy.
Impractically Imperfect
My little purple laptop has been needing a makeover for a while. I started with a couple of stickers I received as gifts with orders, but got waylayed. When I realised that one of my favourite pin makers was also doing stickers I got right on it.
My last treat is one of those practical things that is also beautiful. I am sick of digging around on my bag for my mask when I need to put it in. This colourful chain will put an end to that problem. Even better I can also stick it on my sunglasses to stop me losing them too. Does this mean I am an old lady? Probably, at least I’m ageing with style.
For June’s charity donation I decided to give directly to people requiring support. These are some requests that came up in my social media time lines that tugged at my heart strings. There are too many people struggling to access too many essentials, so I know you are also see hundreds of deserving causes regularly. Please help if you can.
Food and essentials for Ex Foster Kids Children who age out the foster system often have very little or no support. You can donate to help provide essentials.
I’m having a rough time. Everything is a bit of a struggle at the moment, so I’m going to do a wanky, hippie dippy post. Feel free to clock out because I’m about to deep dive into gratitude.
All the Basics
I have a safe, stable home. Food in the cupboards. Running water, central heating. Access to healthcare. A comfortable bed & wardrobe full of clothes. My basic necessities are taken care of and that’s more than a lot of people can say.
FaceTime
And WhatsApp, messenger, zoom & all the other clever doo dahs that allow me to keep in touch with folk. A friendly face or some carry on helps brighten my day.
Pillow Slides
Bought on a whim. Incredibly ugly, but oh so kind to my joints.
Aloe Vera
Aloe Vera is a genius plant. First & foremost it’s hard to kill. If you don’t have plant mum skills aloe is for you. It looks good, it adds oxygen to your room & it’s even easy to grow more from cuttings etc. Added bonus, our bodies love aloe. Need a moisturise, got sunburn, heat rash, a blister? Cut open a leaf and whap it straight on. Upset tummy, mouth ulcers, bad breath, ibs? Add a teaspoon to a glass of water. Wonder plant*
Temporary Solutions
I have a lot of issues with no permanent cure. Hence I have grown to appreciate a temporary solution. Diazepam is certainly not for long term use, but it bloody works for a day or two when your brain thinks the world is attacking you. Jane Austen will not fix my life, but she will soothe things for an hour or two. Whilst mint tea can’t cure my stomach disease, it can soothe the spasms attempting to eat lunch caused. They will return, but the minty goodness will buy me enough time to get home. Temporary solutions are various & abundant. Hugs, hot baths, sex, lidocaine patches, a big glass of wine… Moments of respite are better than none at all.
The Sea
Everything about the sea is soothing. The never ending expanse of it, the smell, the sound of the waves lapping. I always feel calmer by the shore. I can breathe deeper and see more clearly. Pretty lucky that I live on an island. The dazzling deep blue is never too far away.
Bronan
My lovely big loyal boy. Always gentle. My own living hot water bottle. An adorable wee tyrant who has me wrapped around his paw. Who doesn’t want to be awoken by a meowing creature in their face at the crack of dawn every morning?
Vincent D’Onforio
I like how brooding he is and that head moving to maintain eye contact thing he does on Law & Order. He seems like he’d be clumsily kind if you were feeling bad. He’s always despicable when he plays a baddy, which I like, no half measures. I get completely absorbed in the character when I watch him. I always believe it. Also, good name.
Summer Rain Showers
I like the ones that come on heavy, but run out of juice quickly. Summer rain smells good, it freshens everything up and gives me a good excuse not to hang the washing out.
Diet Coke
It is really bad for me, but it tastes soooo good. Big icy cold gulps. I don’t know how to quit you, Diet Coke.
Specs Appeal
Statement specs bring me joy. If I have to wear glasses every day they are going to be splendiferous. Big, colourful, can’t be missed face furniture is the only kind I will consider.
IanHislop
It’s very sexy when a person is that good at anything. He exudes the confidence of knowing he’s top of his game. He can slag off the bad guys with impunity because he leads a pretty decent life. He is cute and funny and incredibly smart. I’ve always been fairly sure that he has a huge, beautiful dick too.
Love
This might be where my sincerity gets too much for you. I care not. Life really wouldn’t be worth much without love. Giving or receiving, it’s wonderful. All those little thoughtful things a person does because they love you. Tiny gifts, texts, snapping a pic of something you’ll like. It all feels good. The warmth of knowing I’ve made someone smile or that they wanted to make me smile. Being able to comfort with your words or a cuddle. Sharing milestones & cups of tea. Love is the point, right? How can we not feel grateful if we have it.
Period Pants
A new thing for me and I like them. Wearing a pair to bed is so much better than using a tampon & worrying you might sleep too long. Likewise, so much better for those last days when you’re not quite sure if your period is actually finished or not. I can’t stand the feel of sanitary towels. Nor do I relish the sensation (or risk) of pulling dry cotton from my body. Period pants are a comfy godsend.
Choice
I’m so happy to live in a time (& place) of choice. So many aspects of my life offers abundant options. I can access almost any song in the world from my phone. Look up current affairs, trivia, what time the chemist closes by pressing a few buttons. I have films, shows, games, podcasts, strangers & friends at my finger tips. Whatever food I fancy can be delivered to my door. In theory I can pursue any career I’d like. I can vote how I choose. Do as I please with my body. Get married or not. Sleep with who I want. Wear what I like & go wherever I want (pandemic aside). Choice is not to be sniffed at.
Gardeners
Hallelujah for folk who will sort the garden in exchange for money. I am physically & constitutionally unsuited to maintaining outside spaces. I do however enjoy utilising them. I also like not stressing about ever encroaching weeds. I will never underestimate the peace securing a good gardener brings.
Little People
I have seven perfect niblings. My oldest niece is the smartest, coolest, kindest 11yr old you will ever meet. She will always be my little muffin, but she has grown into a person who makes me so proud. Then there are my brother’s boys who are his complete mini mes. His oldest is so patient & protective with his little brother. It is gorgeous to watch. My sister’s boy is half rascal pirate, half total love bug. He is a joy to be with. My bestie’s big girl is so cute & sassy. She may only be three, but that girl knows what she wants. Then there are her brand new little brother & sister. Newborn twins are a hand full but man alive are they adorable. I am so lucky to be part of their lives. Helping them become the people they want to be is an honour.
Disabled Ammenities
Parking spaces, toilets, seats right by the door on trains. I love them all. Anything that takes into account that every step hurts is a life saver. Extra space, bars to hold onto, not having to wait, all make my life immeasurably easier. Disability can rob you of dignity in so many ways. Things that allow me to navigate public spaces without being humbled are magnificent.
Sister Tik Toks
I love it when my sister and I send each other tik toks. I feel very seen when she sends me clips that make me laugh out loud or that relate to some shared experience. Having a sister is a lovely thing. Having a sister who gets you is even better.
Life has turned out to be harder than I had imagined. Amongst the struggle it helps me to acknowledge all the little & enormous things that make it worthwhile. I know it’s cheesy, but give it a whirl.
*Not a cure or medicine. Speak to your dr about any health concerns.
Every now & again I realise that I kind of hate all the latest ‘must haves’. Summer 21 is definitely one of those moments. Thus, I invite you to join me as I trash all the things I really don’t want.
Big Collars
Everywhere I look folk are adding massive collars to everything they own. I can’t stand it. It’s twee in the worst possible way. They’re the ugly offspring of 80’s maternity & flower girl fashion. I feel especially nauseous when I see someone sporting a large doily style collar on a pastel knit. It has to stop. Please.
Nope
Pampas Grass
Is that even the correct name? It’s that awful fluffy stuff that keeps turning up in floral arrangements. Usually accompanied by weird dusky pink dried flowers. It’s another 80’s revival that we should have left to rot. The fluff gets everywhere, they always flop & there’s that urban legend about swinging. I’ll stick to fresh blooms, thanks.
Nope
Hankie Tops
I’m usually all for a 90’s throwback. It was a bloody good decade with some excellent fashion. Hankie tops, however, were awful then & even worse now. I still have nightmares about the lemon yellow gingham hankie top I struggled to keep my boobs in on a second date in 1998. I can’t forgive the pitiable piece of fabric masquerading as a garment.
Candlelit Concert
In theory, I actually love this idea. The first candlelit concert I saw advertised was Vivaldi’s Four Seasons in a beautiful theatre. I could see the appeal. It must have been a success because now there is a candle lit EVERYTHING. Abba, Disney, Daft Punk, ballet (is that safe?), songs of Barry Manilo! I’m out.
Bare Midriff Belt
I couldn’t tolerate Carrie Bradshaw belting her belly button. So, I’m definitely not going to find it charming this time around. Can’t we ever learn from our mistakes?
I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.
The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.
Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.
There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.
Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.
I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.
It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.
All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.
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