Got the city on lockdown…

How are you? We’re deep into lockdown now, are you managing to feel sane? It’s hit and miss this end.

I’m realising that although I spend a lot of time at home alone, I really do love the things I do get up to. Recent weeks have been lacking on outside interest. Throw in a nasty flare (& injury) and I’ve really been dredging the spoonie resources to fill the days.

The obvious place to find gentle entertainment is my beloved library. I have been re reading some old favourites. Thus providing myself with diversion & comfort. If you haven’t ventured into the world of Barbara Trapido, you’re missing out. She creates seemingly sedate middle class stories. On closer inspection her interwoven plots & sprinkling of the otherworldly are magical. One of my tattoos is partly inspired by a Trapido book. I never tire of her words.

Thumb & forefinger  holding book open

Podcasts have been another lifesaver. Excellent insomnia salve. Equally good played loud to ease me through the dreaded housework. My latest discoveries couldn’t be more different, but I am loving both. True Crime Brewery is pretty much what the name suggests. A married couple who like beer & true crime take us through a different case every week. They pick a beer from the location of the crime & give a wee review too. Dick is a paediatrician & Gill a nurse, their medical input really adds to the analysis. They both possess soothing voices that make listening to even gruesome events relaxing.

Chachi Chats is a must listen. Danni from The Chachi Power Project welcomes a new guest each episode to discuss all things Bopo. The first two episodes have blown me away. Packed full of information that everyone should know. Full disclosure, yours truly will be popping up in this podcast soon, but I am learning so much from the other guests. I can not recommend this one enough.

I did get out of this house, but only for hospital nonsense. I had a transfusion & a chest X-Ray, which revealed two cracked ribs. The good news is I look exceptionally cute in my mask from Rosana Exposito.

I’ve taken full advantage of our move to phase 1. I had some lovely garden visitors. It does me good to see these faces in person. Long may the good weather continue.

Two mum’s sitting in garden with toddlers on their knees
Black and white image of plus size women in sunglasses

In between times it’s video calls galore and taking advantage of my garden. It is a real luxury to be able to relax outside. Especially when the sun helps a little with my joint pain. Not to mention all the gorgeous wild flowers that bloom in my borders. I only wish I knew how to reach Bronan’s level of chill.

Wildflowers in a vase, women eating an ice lolly, girl laughing on FaceTime
Toddler on a swing & with shark filter
Sleeping cat
Women & child with dragon filter on video call

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.

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

January girl…

January is turning into quite a challenge on both physical & mental health fronts. Mood dips at this time of year are predictable, but this feels like it’s edging towards more than that. Thus, I am doing the sensible thing & taking a rest.

I’ll be still be sharing other people’s cool stuff & perhaps bits from the archives. There’ll be a pause on new content. If you begin to miss me, you can find me here & here.

Black and white cat lying in back with text, paused for inner maintenance

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

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* Photography Credit – Megi Aben

Easy ways to support your spoonie friend at Christmas…

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.

Please don’t wake me…

Today kicks off Sleep Awareness Week, which aims to highlight the importance of good sleep. As a chronic insomniac I am of course acutely aware of how important sleep is. I’m writing this at 4am, so I haven’t found the cure for sleepless nights. I do though have some semi successful strategies.

My relationship with sleep has flipped from one extreme to the other. In my youth I could drop off anytime, anyplace. I loved to snooze and had zero issues dropping off. I was the queen of the long lie. Sleep became a problem when I first experienced mental health problems aged 19. Unfortunately, I have never managed to regain my easy breezy relationship with slumber. Almost twenty years on I have become accustomed to functioning on a few hours a night. Chronic pain has done little to aid a peaceful night, but an inability to calmly shut down is still a major obstacle in my quest for rest.

A decent night’s repose can affect everything from heart health to sex drive. It goes without saying that exhaustion also has a massive impact on mental health. The NHS advises that most of us need around 8hrs sleep to function properly. In fact, lack of sleep can so massively impair cognitive faculties that experts suggest driving after only 5 hours sleep is just as dangerous as driving drunk. Everyone should be mightily relieved that I cannot drive.

The long-term effect of insufficient sleep is grim. The anxiety of going to bed each night knowing achieving sleep will be a battle is wearing. The more you worry about not sleeping the less likely it becomes. Constant fatigue makes getting through daily tasks difficult, which adds to one’s stress levels. This in turn pushes that magical 8 hours even further out of reach. Long sleepless nights are lonely. There’s rarely anyone else awake leaving a busy mind way too much room to mull over worries. Throw pain into mix and you have a recipe for despair. Moving through the world in a worn-out shuffle will grind you down, which is why I offer my extensively tested tips on getting some god damned sleep.
I’m not going to waste your time with milky drinks and lavender under your pillow. Everyone knows the basics and they aren’t going to cure hardcore insomnia. I don’t have a failsafe solution, if I did, I’d snoring now. However, these are the things that I have had some success with over years.

Bedroom Tips

Keep your bedroom cool. Lowering your body temperature helps the body prepare for sleep.

In theory that’s why a hot bath should aid sleep, but I find any sleepiness gained from the temp drop is lost during the process of getting dry and organised for bed. If you do less faffing post bathing it might work better for you.

No tv in the bedroom. This is a definite for me. I find a television to be the opposite of relaxing. I need my bed and bedroom to be a completely chilled out zone. Which sits nicely with my next point.

Try to make your bedroom as pleasant as possible to be in. Obviously, that means different things for different people. For me it’s nice sheets, subtle scents, comfortable mattress.

Black out blinds are your friend. I could not live without mine.

Invest in one of those huge maternity pillows. They give so much support if you have back or joint pain. Plus they’re just super comfortable.

Sound Effects

Rain on window

I use sounds machine apps. I like heavy rain/ thunderstorm type sounds, but experiment and see what works for you. Something about being safe & protected from the elements I’m hearing sometimes helps me drift off.

Soothing music (whatever that means to you) at a low volume can also help. I like to mouth the lyrics and focus on words I enjoy rather than my own thoughts. Getting the volume just right is key for me, so again, you might need to experiment. Select specific songs and make a playlist beforehand. You don’t want anything that unexpectedly bring unpleasant or stimulating associations to mind.

Preparation

I should probably have started here, but lack of sleep melts your brain. So, you’ll have deal with my disjointed thinking.

These are all evident. I’m going over them because sometimes you miss the obvious when you’re knackered.

Don’t eat too close to bedtime.

Don’t watch, read or listen to anything that will bring up stimulating emotions (nothing scary, disturbing, sad, triggering etc).

Avoid arguing or deep conversations right before you hit the hay.

Smoking, caffeine, some meds (check with gp/pharmacist) are no goes before you attempt sleep.

Against Accepted Wisdoms

Sleeping cat

I’ve consulted many Drs, Psych’s and other practitioners over the years and some of the oft repeated advice they’ve given me has turned out to be just plain wrong for me. If you find something that really does or doesn’t help, even if everyone is telling you the opposite, do you. For me this includes:

Looking at my phone in bed. Putting it on night shift mode to alter the light tone to yellowish rather than blue is a must. Otherwise I find aimlessly scrolling can be very helpful in getting me sleepy.

Reading in bed also works for me. I can’t fall asleep without reading. I find that if I just keep going until I literally can’t keep my eyes open, I have a good chance of getting into a proper sleep. I think it’s because my mind is occupied with the content of the book rather than whatever mess is in my head. Clearly, it’s important to choose the reading material with reference to my previous points.

Sharing the bed with pets. So many people have cautioned me against this. I find my petting my cat and hearing his purrs excessively relaxing. Thus, I ignore such warnings.

Hippie Dippie

Constellation lamp

I hate to be that person, but occasionally the esoteric route gets you there.

A constellation lamp in a dark room can offer something uncomplicated to focus your attention on long enough to get to sleep.

Gentle yoga – clears the mind & stretches everything in a pleasing manner.

Desperate Measures

When you’ve been attempting shut eye for hours and are reaching the point of hopelessness; get up. By that point you aren’t going to sleep. Every toss & turn just raises anxiety levels. I find it much more productive to get out of bed and stop forcing it. Do whatever you can manage and if you get drowsy try again.

Medication – You need sleep to operate. There comes a point when discussing medication options with your Gp is the sensible thing to do. I have tried several sleeping pills over the years. Most didn’t work for me. Most are not a suitable for prolonged use due to addictive and/or tolerance building properties. There are some drugs that can be used for longer periods. I have been prescribed one such medication. It doesn’t have a 100% strike rate, but when it does work it knocks me out all night.

Sleep when you can in extreme cases. Often napping is counterproductive when fighting insomnia. However, when you haven’t had more than a couple of consecutive hours sleep in weeks that goes out the window. When my sleeplessness is at its worst, I will get so completely exhausted that my body will crash. That doesn’t always happen at bed time. Take that sleep. You need it. Sleep all day if you must.

Last but Not Least

Oxytocin

Sex and orgasms in general are brilliant for sleep. Sex works on so many fronts. You can tire yourself out, all those feel good hormones chill you out and of course it’s the perfect distraction from any negative bullshit you have going on. Flying solo releases all that lovely oxytocin and melatonin too, so don’t be shy about giving it a try.

Let’s hear it for the girls…

It’s International Women’s Day again and we’re all applauding the amazing women who are soaring in all manner of ways. Whilst I am very much here for that, I also want to give a standing ovation to the women who are just about holding it together. I really want to shine a light on a different kind achievement. So often we overlook the strength it takes to just keep going on the face of adversity.

Neon together we will burn brighter

I want this IWD to be about the women living with chronic illness, mental illness, inequality in the workplace, trying to make ends meet, shitty relationships & everything else that weighs you down. Perhaps you’re not launching your own collection, pulling in 6 figures or living the insta glam life. That does not mean you aren’t striving and succeeding. Every day that you get out of bed despite being wracked with pain, you’re killing it. Every single mother who loves, feeds & inspires her child(ren) every day is changing the world. Forcing yourself out the door when you’d rather curl into a ball & cry, is winning. Steering your own course in a workplace that is designed for the comfort & advancement of men makes you a boss. All the women who have to fight stigma & danger to claim their womanhood, you are queens. Even if you were unable to wash your face or get dressed today the fact that you are still here, still living, still fighting is enough.

We are all Wonder Woman

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We all know smart, talented women who are doing the best with the hand they’ve been dealt. That may mean that their successes aren’t as big & shiny as those we’ve become accustomed to celebrating, but they count. Those hard won achievements deserve acclaim. This year let’s hear for the women who keep their worlds spinning every day in spite of universe’s attempts to thwart them.

*Wonder women print by SaturnTwinsArtShop.

I don’t know where I stand…

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

A day in the life…

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.