I miss you like sleep…

Too much time in my head is distinctly bad for me. Not getting stuck amongst all the crap i’ve crammed up there is an ongoing project. It is not an endeavour that is aided by inaction.

Staying home alone all day, everyday is not ideal. I require distraction. I need people who make me feel swell and to do things that help me feel worthy. I like knowing that I could jump in a taxi and go anywhere. Having a sense of control is massively important.

Being entirely reliant on others for almost everything makes my insides jitter. I feel more of a burden than ever. Which activates my guilt & anxiety. I’m obviously also worried about myself or someone I love getting ill. Plus the horror of all the people who are suffering & dying every day. I’m basically a big ball of negative emotions.

I’m struggling with pain. I miss my little ones. I miss all my people. I can hardly sleep. There’s very little work. There’s too much time to think. All this on my own time thinking about what I miss inevitably highlights the major omission.

When left to its own devices my is brain predictable. It clings to trauma. If not occupied with the business of living, I regress. Slip back into dreams of the births I’ll never labour through. Flashbacks of the blood & pain I did. Haunted by the over used phrase that always signaled it was over.

There are so many what ifs. Too many of my own actions to question. Huge & tiny alterations that could have changed the outcome. Things I never said. Words others can never unsay. Blame to place. Regret to carry. Penance to complete.

I feel trapped with all I’ve lost and every little thing I can’t share. The good memories are as painful as the bad. The selfies I took when my belly began to change shape. That magical second line on the test. Marking midwife appointments on my calendar. Blood tests with the right numbers. Making lists. Checking what ridiculous object the app tells me my baby is now the size of. Plans & scans & the bam bam of heartbeats.

Rainbow reflection on pale either arm

My body remembers it all in such intricate detail. I recall the fractionally altered taste of mint tea. Sex felt different and the smell of everything intensified. I was heavy with fear. Dulled by fatigue. Yet still floating on hope and entirely delighted to experience whatever this new life threw at me.

It never goes away. I can never take my foot off the pedal. I’m always close to skidding off the road. Lockdown is like a battle not to drift to sleep at the wheel. Spending too long contemplating my past or the what might have been is dangerous. Finding ways to keep my eyes open is getting harder.

Two lines to indicate positive result on pregnancy test

My quarantine in pictures…

It probably won’t come as a surprise to learn that I haven’t been developing new skills in lockdown. My novel remains unfinished & my sour dough never got started. I’ve mostly been entertaining myself with much less useful activities.

Internet nonsense has been a fairly good diversion. I’ve killed some time with insta challenges and silly filters. I alarmed my mother with candy floss hair (I’m almost 40 & she still doesn’t want me to touch my ginger locks). I’m a little bit tempted.

Hair day filter candy floss colours

The cosmetics procedure filter was less enticing. This is not a good look. Neither was the art work I produced when. I joined in on one of those Instagram tags. It was rather pleasing to do, though.

Pencil sketch of house plants

The pillow challenge was a bit more successful & even more fun.

Plus size women  naked apart from teal pillow

I’ve done a fair bit of online shopping. Mostly treats for little ones, but the odd random item for myself too. I seem to be more easily influenced during lockdown. I baked more biscuits than I could eat. Got this gorgeous digital portrait oh my niece & I to add to my wall art.

Digital portrait and photographs on wall

I’ve made a million video calls. Tonnes of Hi jinks with the the kids. Cocktails & gabbing with adults. I’ve done foot peels & face masks. Organised sock drawers, finally arranged my photos into albums & listened to podcasts galore. I even had socially distanced picnic lunch in the driveway.

FaceTime of toddler in ball tunnel
Video  call with two faces in lemonade filter
Video call with dragon filter

Basically I’m trying to defeat cabin fever & stay sane. The fact my darling sister talked me into learning a tik tok dance questions if I’ve managed it.

Two women doing tik tok dance on summer dresses

The drugs don’t work…

Yesterday was Fibromyalgia Awareness Day and I think my body knew it. My back is certainly making me very aware that fibro hurts. So much so that I couldn’t even finish this in time to mark the day. If I’m forced to know about fibromyalgia all the live long day, then I’m afraid you’re going to have to find out about it today.

Fibromyalgia difficult to manage. It’s unpredictable. You can hurt everywhere or the pain can focus on a new spot everyday. One day you might be too fatigued to get dressed. The next everything you eat sends your guts into a temper. It can have an effect on cognitive abilities, make your skin burn, muscles ache & head throb. Sometimes all the at the same time.

There’s no cure. Sufferers often experience constant pain. Treatment usually includes a combination of pain relief medication and non pharmaceutical interventions (massage, tens, specific exercises). Many also receive therapy aimed at helping accept chronic pain because treatment rarely results in the eradication of symptoms. Living with fibromyalgia means always feeling some version of unwell.

Whilst you can’t make any of us better, you can help. There are easy peasy ways to not make our lives harder.

Ditch ‘Get Well Soon’

Fibro is a chronic, incurable illness. We are never getting better. It may be well intended and seem like a little slip, but it’s exhausting. Luckily it’s simple to fix. You can express both your well wishes & your understanding of the situation with these words, I hope you have a better day soon.

Don’t offer magic cures.

Struggling with an illness that impacts every aspect of your life motivates you to get informed. Fibro folk don’t need your unsolicited advice. We definitely don’t need to hear about the same magic cures over & over. We’ve researched whatever diy fix you heard about in instagram. We try credible therapies available to us. We’ve considered our diets & yoga & cbd. We really don’t need to hear about how your cousin’s flatmate changed their life with turmeric. It’s patronising on so many levels. Stop it.

Invisible isn’t imaginary.

Fibromyalgia can be an invisible illness. It doesn’t necessarily leave any physical sign of its presence. That doesn’t mean it isn’t real. If you don’t know what fibro is, 10 minutes on google will be illuminating. No one is required to answer your intrusive questions. Medical records are private for a reason. If you don’t understand the condition, don’t worry about it. Extremely well trained medical professionals do. As a person with fibromyalgia it is not our job to convince you of the severity of the illness. It requires zero effort to mind your own business.

Don’t judge my good days.

Fibromyalgia is erratic. I never know how I will feel when I wake up. Sometimes I can go from reasonably ok to excruciating pain in the space of an hour. I try to plan around fibro, but nothing is ever set in stone. I can spread out appointments. Schedule rest days. Make a timetable for essential tasks, but my body doesn’t care. It will throw a painful spanner in the works whenever it pleases. The fact that I could do X yesterday is no guarantee that I will be able to today. An outing that I managed last week could easily leave me unable to function for days another time. I want to live as full a life as possible. So, on good days I attempt to get things done. The fear of being judged solely on those days is horrible. I’m not faking symptoms to avoid things I don’t want to do. I’m not lying when I cancel plans. In fact, the opposite is true. Most of the time I underplay how bad I feel. If I were to vocalise every dreadful sensation I’d never talk about anything else. I know my illness is frustrating. I hate that I inconvenience so many people. Please, believe that I am I trying my very best.

I need a little space…

If this crisis has taught me anything it’s how grateful I am to have a safe & comfortable home to quarantine in. Not everyone is so fortunate. That’s why this month I have chosen to support Refuge.

I’m sure you will have read about the increase in domestic violence incidents since lockdown began. This quarantine is far more than an inconvenience for people living with an abusive partner or parent. The choice of being locked up with someone who harms you or leaving with nothing during a global pandemic is a horrible dilemma. That’s why organisations like Refuge are even more vital at the moment.

Sun shining beneath  dark clouds

Refuge provides a range of services for men, women & children. They offer safe houses, advocacy culturally specific help & a 24hr hotline. These services save lives. I urge to support them if you can.

You can make a one off or monthly donation of your chosen amount. Or you can opt to buy a Refuge Parcel. These fund specific items like hygiene packs, child support, emergency parcel and so on. I opted for a children’s parcel containing items to help a little one settle into a new life. I think it’s a wonderful idea. It makes me feel really happy that I can help make a child’s world a little better.

Refuge logo and helpline

Kick off your Sunday shoes…

Earlier this year I started a little shopping in anticipation of the sun coming out. Well, the weather has changed, but I’m not going anywhere. Since I’m dying to show off my lovely summery footwear I decided to give you lot a look.

I used to wear converse a lot in my youth. Tiny skirts, tights & converse loomed large in my teens. Swimwear & all stars were the daywear outfit of choice on girl’s holidays. Perhaps nearing forty has me seeking out old favourites. In any case the minute I saw these yellow flatforms I knew they had to be mine. I only got to wear them once before lockdown kicked in. I can’t wait to get these back on my feet.

Converse  yellow flatforms
Woman’s legs wearing polka dot trs & yellow converse
Trainers – Converse Lift

The next additions to my summer wardrobe were inspired by my toddler nephew. His stylish Mummy got him some rainbow sandals & I really loved them. Unfortunately his exact ones are only available in baby sizes. I did find this very similar pair in the girls section. Luckily my teenie weenie feet in kid’s size shoes. So, I snapped them up. Behold my rainbow pretties.

Rainbow sandals on pale feet
Sandals – Next Kids

Cherry baby…

I may have given up on the idea of bras and proper clothes in general. My face remains unprinted. My hair is in a permanent very messy bun. However, my quarantine nails are cute.

Cherry blossom  nail art

I missed blossom season, so I made my own. I even mixed my own base colour. Check me getting fancy.

Graphic greyscale nail art

Little bit of grey because lockdown is gloomy. Lot bit of colour to remind me it’s not forever.

Matte spooky Forrest nail art

Spooky forrest because that’s always a cool look.

Toucan nail art

Then turn up the kook with some big silly toucans.

The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick