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.
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!
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.
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.
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.
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.
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.
Bought on a whim. Incredibly ugly, but oh so kind to my joints.
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*
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Oh my god, it’s happening. Lockdown is easing & I went somewhere nice. I put in some mascara. I picked a pretty outfit. Stage 1 of project live again is go!
We’re still quite restricted in Scotland (better safe than sorry), but things are moving. We can now travel out with our local area for non essential travel and see up to 6 adults outdoors. That may not seem like the most exciting development, but it is making me woohoo. We took advantage of the sunshine yesterday and embarked on a mini road trip. My sister, Mum, the boy & I hit the beach. We really do like I be beside the seaside.
The little man is a total beach baby. He literally rolls around in the sand & loves it. We made pirate islands, volcanos & buried everyone’s feet. Needless to say we brought half the beach home with us.
I also found a minute to watch the soothing waves and snap some outfit pics. Here’s to a long hot summer with loved ones!
I’ve been fairly quiet on the blog front. Clearly we’re all under some pressure, but I’ve also been dealing with some bonus pain. I’ve had episodes of awful symptoms which signal that my pancreas may be acting up again. It’s been a while since I’ve had to deal with pancreatitis and I am scared of a comeback.
The pain triggered some really desperate memories. It also gave me lots of time to ruminate on how PTSD never stops giving me unpleasant surprises. The nature, frequency & severity of my reaction to trauma stimuli is forever changing. In my (also unending) quest to de stigmatised mental illness I thought some recent triggers might be worth sharing.
Waking up in the middle of the night to pee is not a thing that I do except during pregnancy. I’m a hold ‘til morning girl. The frustrating sensation of leaving a comfy bed & stumbling to the toilet in the dark is one I associate with pregnancy. Sitting on the toilet half awake looking at my painted toes I had the trauma version of de javu. My body remembers this. The exact emotion. The precise thoughts. I’m ok, but I know I won’t be getting anymore sleep. I’ll be distracting my head from going back there. Lying still in the dark would be asking to feel things I don’t want to feel.
Sometimes to occupy my mind through those sleepless hours I watch crap tv. Ideally something I don’t have to concentrate on. Mildly entertaining 90’s sitcoms work a treat. That is until the wife in King of Queens is unexpectedly pregnant & then just as they’re getting happy about it, not pregnant anymore. Numb viewing to uncontrollable sobbing in 20mins or less.
A fun park adventure with the rascal is momentarily derailed when someone calls me his Mummy. I smile, correct them & return to my role of bad octopus pirate. I feel the impact, but I look steady. Until much later when the memory of all the babies who’ll never call me Mummy knocks me flat.
I wake up bloody because my period has started in the night. I’m not inconvenienced I’m terrified. Those cramps ripping through my pelvic region signal disaster. It takes a bit of time to centre myself in the now. Repeat, ‘I’m ok’ over and over as I drag myself through a shower. Tampon, comfy clothes, paracetamol. I’m almost calm by the time I return to tackle the bedding. I’m genuinely shocked when the sight of blood on sheets sets me trembling. I was devoting all my attention to not getting sucked into one trauma hole that I forgot about another. I have to sit on the floor but I’m still watching an old iteration of myself. Younger, sicker me is ripping bloody sheets from an entirely different bed. More than the sheets are stained. My body is raw & dripping. I feel as exhausted now, in my healed, safe body as I did then in that recklessly butchered one.
My stupid period tracker with its stupid unwanted alerts. High chance of pregnancy. Such a simple sentence triggers such complex crazy. The stress and hope of trying. The heartbreak of failing. The unwanted reminder of how few of these high chance days may be left. Fleeting recollections of disappointing perfunctory sex and an even more disappointing man. Wearily buying tests. Angrily buying tampons. Wanting the monthly reminder to be over and fearing that end. Wrap it all up in a hollow ache in my middle that never leaves you, but echoes as I read those words and you have my condition.
My ridiculous cat managed to injure his paw and now I must try to keep dressings on until it is healed. If you know anything about cats, you’ll know what a challenge this is. I have experimented with various ideas none of which preserved his dressings for long. I started thinking he needs a sock & then remembered I had some baby socks. They must have belonged to one of my nieces or nephews. Baby bits and pieces will end up in your hand bag/pocket after a day of auntying. I seized upon the long lost sock as the solution. I didn’t feel sad or even link the tiny item to anything painful until I started trying to put it on my cat. Then from nowhere I was flooded with too many feelings. I love my boy, he’s wonderful. Still, I couldn’t avoid the fact that he’s the sole recipient of my mothering.
A character in the book I’m reading is trying, with difficulty, to explain why she feels guilty for various past events. I feel as though I have taken a deep breath & inhaled fictional strife. My own twisted guilt is equally hard to comprehend. For me, self reproach is as essential as oxygen. The chord of perplexing guilt could catapult me into a multitude of memories. This time I land flailing in the aftermath of standing up for myself. I can feel the certainty that so recently fizzed go flat. That overwhelming sense of this must somehow be my fault returns. I feel angry about all shit I put up with, but I still can’t fully convince myself I’m not blame. Now I’m full of guilt for events long passed. Today is ruined as I attempt to untangle things that never made sense to begin with.
Triggers lurk. Sometimes entirely unexpected things stir up pain. It can be fleeting or set off a chain reaction. I have adapted to a life with booby traps. I often appear untouched, but only because I work so incredibly hard at hiding the mess.
I managed to sneak in a little trip to the park before we completely locked down. I took the opportunity to wear some Xmas pressies since it’s unlikely I’ll be out of lounge wear for quite a while.
The only possible fashion choice in this weather is layers. I piled them on for my icy outing. My excellent Mum found this lovely vegan brand & showered me with their accessories. While my sister indulged my leopard print love.
The boy found new ways to play with my walking stick & slid around on the ice with his Mummy. We completed our winter adventure by feeding the wildlife. Those swans are so beautiful, but not above squabbling over grub.
On Thursday my Dr confirmed that she believes I have ‘Long Covid’. It’s been two & a half months since I tested positive and symptoms persist. It’s likely they will continue you to do so for some time.
My Gp took bloods and checked my vitals. My oxygen levels are a little low, but not worryingly so. My heart rate in the other hand is way too fast. We’ll need to keep an eye on that. The Dr is trying to get me referred to a covid rehab clinic, but in the meantime, there’s very little that can be done. At all stages of this illness drs have stressed that there is still so much that no one knows. New complications are cropping up all the time. The more complicated your medical history, the more complicated covid can be. For me it’s constant breathlessness and fatigue. All my usual chronic symptoms are heightened. My pain levels are through the roof, my appetite is decimated and when I do eat my digestive tract objects.
Long term effects of the Covid 19 are far reaching. Everything from strokes to kidney failure has been reported. This virus is dangerous. Please take it seriously. I know the safety measures we have to take are hard. I hate spending so much time at home on my own. The emotional & financial toll has been huge for many, but we can’t afford to be reckless.
If you can, stay home. Wear a mask, wash your hands and observe social distancing rules. Everyone wants to be seeing loved ones & spreading merriment at this time of year, but it just isn’t safe. It will take time to get the vaccine out. Covid doesn’t care about Xmas. There will be more opportunities to celebrate. It won’t kill us to scale back festivities. It could kill people you love not to.
Always get me down. Today is both. Although if I’m honest it doesn’t have to be either. There are days when I just wake up sad.
There’s no reason outside all the reasons that existed when I went to bed. No trigger, no resolution. Everything just feels pointless. If I burn a piece of toast I am utterly useless. If someone doesn’t call it’s because they hate me. Then I know I’m over reacting and I hate myself.
My thoughts get stuck in a loop of painful circumstances. All the things I cannot erase or redo. I inhale all the blame and forget to exhale the guilt. So, it lives somewhere inside me. Dormant, but never extinct.
Maybe tomorrow I will be ok. I’ll return to regular levels of coping and carry on. Or this woe will continue to spew. It could be weeks or months of life coated in depressive ash. I never know.
There is no cure; other than keep going. Hoping this eruption isn’t the big one. Putting faith in my ability to outrun the thought of diving right into the burning mess.
Next Sunday could bright. Or the one after that. There will be days to breeze through again. I just can’t feel it right now.