Watching through my fingers…

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.

Everyday it’s getting colder…

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.

ly I’m standing in park with walking stick wearing jumpsuit & faux fur coat
Jumpsuit -Asos Curve
Scarf – Pom Boutique
Coat – Marks & Spencer
Cardigan – Boohoo
Boots – Dr Marten
Glasses – Where.light
ly is  wearing leopard print jumpsuit & navy maxi cardi. The photo had Forrest background superimposed
All those mirror selfies are getting boring.

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.

Toddler in coat & Woolly hat in playpark
Pink post it note on frosty leaves
Swans on an icy pond

We’re on each other’s teams…

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.

Ly is Weston big glasses and a feminist af face mask

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.

A mask in blue background with  text ‘wear a mask’

Rainy days & Sundays…

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.

Dead roses in a vase and their shadow

Dancing in the dark…

GlasGlow is back. We have taken the boy every year of his life, so this has become our own little Halloween tradition. This year was even better than last.

Blue neon lights blurring in rain
Large moon and coloured lights.

The boy was proper excited and dancing around; utterly adorable. It wasn’t too crowded and people paid attention to social distancing. The rain even almost went stopped for us. It was lovely.

Toddler running under neon rainbow
plus size woman in tartan coat with toddler in red duffle stunting infront of twinkly light wall

It was a bit of struggle for me to get around the park. Post covid I’m even less mobile. I found some places to sit and took periodic rests whilst the little man enjoyed the lights.

Pumpkins and giant glowing crystal in dark park
Two adult smiling women and toddler surrounded by lights

Much fun was had. Now I’m in recovery mode and jammies all weekend.

Build me up…

It’s been ‘ugh’ for a while now and I’m in danger of wallowing in a big puddle of woe is me. I’m making efforts to feel better. I started by tackling my inbox and then tried to clear some light housework. Ticks on my to do list helped me feel less useless. Now seems a good time to build on that by counting my blessings.

So, today I am grateful for,

My big comfy bed (& no one snoring, farting or otherwise bothering me in it).

My fridge holds soups & fruit juice galore. My stomach only wants these & the occasional bread product.

My demanding little purr ball.

Black & white cat with his eyes closed having his ears rubbed.

Excellent new Jim jams. They have pockets and are so soft I keep stroking myself.

Ly is taking mirror selfie. Smiling & wearing pink jammies

Hot running water.

The sick & ridiculous humour of the Small Town Murder podcast.

Small Town Murder podcast logo

A plethora of supportive & loving people.

All the perfect little ones said people have made.

The writings of Sara Pascoe & Barbara Trapido

Free and accessible healthcare. Big love, NHS.

Red love heart and NHS in white letters

The freedom to drift in and out of sleep as needed.

The phone steriliser relieving covid related iPhone anxiety.

Messages of love from my big muffin.

Text message with sad alien face

Lemon & lavender scented heat pads.

A room festooned with beautiful blooms.

Various bunches on flowers in vases. Sunflowers , roses, lilies, berries, gladioli

Try not to breathe…

You’ll have to excuse my silence, I have not been feeling good. What I thought was a bad cold, progressed to maybe flu & a uti. Then my sense of smell disappeared and my tongue tasted disgusting. Fevers, unrelenting fatigue, one home test and I suspect you know where I’m at.

Corona town is no fun. I’m on day 15 and I still feel like shit. I have improved a little. I can now eat toast & drink fruit juice without my stomach violently objecting. On the other hand, my cough is getting worse again. I still ache all over and my joints are throbbing. I’m losing entire days to sleep, but remain exhausted. I have a constant low level headache that periodically ramps up to ow! I’m breathless all the damn time. And of course my usual complaints are all heightened. It feels bloody horrible.

I’m stumped on how I contracted corona. I have been careful. I hardly go out. I have seen only a small group of people since this began and always in accordance with the rules. I wear a mask. I’m hand sanitiser obsessed. No one has been in my house since March. Still I managed to catch it. This bug is not messing around.

I’m very grateful this isn’t worse. I have pre existing conditions & a pathetic immune system. I feared this virus might knock me out entirely. I’m glad to be managing at home, but trust me, you do not want this. Even the not so serious covid is plenty bad.

Please be extra careful. Take care of yourselves & everyone you may come into contact with. Normal is a long way off.

When will they stop…

I used a hand sanitiser in a train station the other day. It was one of those super strong types that you find in hospitals. As soon as it hit my skin I was whisked back in time. For a second or two I was somewhere else. Somewhere I didn’t want to be.

The cold sensation drifted through my body. A zoetrope of mixed up images spun in my head. Blurry flashes conjured by the clinical scent. I felt dizzy. I sat down, took some deep breaths. It passed. I was grateful.

Blurry spinning image of trees & sky

It wasn’t entirely gone. That night the whirl of disjointed scenes dipped in & out of my dreams. Random words have jarred memories. My mind has wandered mid thought or conversation. I have felt the panic rising. Spells of forcing my head to connect with my physical reality have emerged. Struggling to focus on what I can actually see, hear, smell in this moment. Ignoring the feelings climbing my throat.

Tonight in the shower I couldn’t shake the feeling that the hot water streaming down my legs was blood. I couldn’t wipe the hospital aroma from my nostrils. Nor soothe the ache that spread from my back to my thighs. The hand sanitiser has triggered a reaction. My body is recalling the trauma stored deep within. It’s a phenomenon associated with PTSD known as body memories.

I haven’t experienced this symptom in quite some time. It lies dormant; rising unpredictably. Sometimes reacting to obvious & painful stimuli. Or, like this week, triggered by a tiny insignificant detail. My olfactory senses seem particularly attuned to old wounds.

New born baby feet with words birth trauma Association

This time it’s the initial loss. I feel my body failing. I know it isn’t happening. I have learned how to pull myself back to the here & now. Still, those moments when I’m dragged to the past feel completely real. I am not just thinking about unpleasant events. I am feeling them. My flesh & nerves & senses are reacting to something that happened 20 years ago.

Body memories are excruciating. It becomes a battle between what you know & what you feel. Fighting strong emotions is a challenge. When you add physical sensations grounding yourself is an onerous task. I have experienced these episodes replicating the sensations I felt during miscarriages & pregnancy. At times these physical memories are accompanied by flashbacks & other PTSD symptoms. Other times they occur in isolation. They mirror my actual experience so completely that I’ve found myself taking multiple pregnancy tests when I knew it was almost impossible for me to have conceived.

Sands logo

It’s another aspect of PTSD that I rarely see discussed in the mainstream. Post Traumatic Stress Disorder is not only (or even mainly) associated with combat trauma. Yet, it’s the link most people draw. The violent outbursts in media portrayals of the illness are not accurate. New studies are highlighting how prevalent PTSD is in women who have experienced baby loss & birth trauma. For most of us, managing PTSD is an internal process. Distress may leak out, but the grind is with yourself. Accessing the right help, surviving that help (trauma therapy can be brutal), learning to manage symptoms, accepting the parts you can never fix & the impact they will have on your life.

It’s painful & exhausting & many of us never completely recover. To stand any chance of healing specialised therapy is essential. There are so many barriers to reaching that help. It can take years to obtain any psychological intervention without the resources to pay privately. Even longer to receive the specialised therapy that can actually help. So many people can’t afford to wait.

This month I’m supporting The Birth Trauma Association and Sands. Both organisations support families who have experienced trauma surrounding baby loss & birth. Please join me if you can.

Will you feel better…

My recent flare up has been tenacious. Stronger pain killers aren’t a practical long term option. As a result I’ve been trying other pain relief methods to back up my existing medication. Thankfully I have had some success, which I’m happy to share.

I’ll kick off with the simplest & easiest to access tool; the foam roller. I saw some insta posts about their usefulness with muscle pain. I had previously associated them with sports injuries & hadn’t realised it might be worth trying one myself. Over to eBay I go & purchase myself this neon friend. Including postage it cost around a tenner. They’re available in various sizes to suit different body parts. I opted for a bigger version to use on my lower back. It couldn’t be easier to use, simply amply a little pressure & roll the problem area. I’ve found it to be helpful for brief periods. I use it whilst sitting at my desk to reduce pain & stiffness. I also use it before bed so that I’m getting into bed in less pain. I’d definitely recommend giving this a try.

Orange & pink neon foam roller

Lidocaine patches are less accessible, but more effective. They deliver topical pain relief directly to a painful area. NHS guidelines on prescribing this treatment have recently changed due to cost. Meaning it is very hit & miss on which GP’s are permitted to prescribe them. The patches are only licensed (& mostly marketed) for treatment of shingles pain. However, this is only because shingles patients were used in the testing of the product. Pain specialists are increasingly prescribing this product for ‘off label’ uses. I found the 5% patches really effective at reducing pain in my arthritic knee & also fibro pain in the other areas. They don’t remove the pain, but I found a significant improvement. Unfortunately I’m not sure if I will be able to continue using them due the new restrictions. I will absolutely be pushing for them. I’d certainly suggest asking your Dr about them.

My latest discovery is Capsaicin cream. It’s derived from chilli peppers. It’s a topical cream that works by interfering with pain signal to the brain by reducing the level of a chemical (substance P) that binds with pain receptors. Studies are showing good results with Arthritis patients. I have been pleased with the relief it provides on my knee & other joints. My Gp suggested this cream & is happy to prescribe it. You can buy it over the counter (but it’s seems is not widely available yet). If you’re dealing with fibro, arthritis or similar conditions this is something to jump on.

Blue body with spine lit up orange & red

For reference I use regular pain medications along side these treatments. I’m not a medical professional, I share my experiences in the hope of helping others. If in doubt, always seek professional advice.

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.