Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

Another little bit gets lost…

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.

Pulse oximeter  with heart rate at 180 & oxygen 95

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.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

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.

The words I’m not ok on black background

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 stigmatise 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, 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 the shit I put up with, but I still can’t fully convince myself I’m not to 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.

Red Alert…

The discourse around Sarah Everard’s disappearance has been horribly familiar. The tired victim blaming about where she shouldn’t have walked. The same sinking feeling as the days go by. Duplicate faux shock from men when we recount what life is like for women. The self-same chorus of ‘not all men’. Year after year. Case after case. Victim after victim. It is always the same. None of this is new or surprising. It’s just horribly sad & terribly frightening.

Women aren’t under any illusions about the world we inhabit. We know that we aren’t safe. We’re scared when we walk home alone from the train station. We calculate the threat of each interaction with a man we don’t know. Fashion make shift weapons from handbag contents. The rules are ingrained; no headphones at night, carry your keys, shout fire instead of rape, call me when you’re home! We have been absorbing the message that we are in danger since childhood.

There is no poor decision making. We are simply living our lives. Avoiding all risk isn’t possible. No matter what complex precautions we take, we are exposed. If the journey from my bus stop to my house is along dark, quiet streets then I have no option but to regularly walk alone on dark quiet streets. We don’t have personal escorts, we can’t control who will sit next to us on the train, taking taxis can be cost prohibitive & most cab drivers are men anyway.

Dark,  foggy residential street

We know that ‘not all men’ are dangerous, but we don’t know which ones are. From childhood girls are bombarded with harassment. It never stops. Teachers & drs & bus drivers & our friend’s dad & policemen & strangers on the street & priests & guys in bars & colleagues & friends & lovers. Lots of women aren’t even safe in their own homes. We all have stories of close calls and false alarms. Most is can tell you about the encounters we couldn’t escape too. It is not a revelation that most guys aren’t going to murder us. Knowing that doesn’t change our real fear because often it’s the one you trust who will. The worst case scenario is a reality and we’re reminded of that every single time a man stands too close or lingers too long. We are adding up where this is headed when a creep makes a crude comment or gets aggressive when told no. Here’s the thing that not many men will admit, you know it too. You all know men that you wouldn’t want alone with your sister/daughter/girlfriend. You see those scary men shouting at us on the street and grabbing us in bars. Every time you tell a woman you care about that you’ll see her home or to her car it’s because you are fully cognisant if the threat. The more insidious of you get a kick out knowing you can frighten us without losing plausible deniability. Not all, but definitely enough.

I read a story recently about a guy who got a big cash in hand payment & had to take public transport home with the money. He was on high alert for the whole journey. Everyone looked suspicious. He second guessed his every move. When he relayed how stressful the journey was to his wife, she replied ‘ now you know how I feel everyday’. The solution to this problem isn’t changing female behaviour. Our awareness is at code red. Let’s tackle the predators not prey.

Instead of rushing to shout ‘not me’ men need to listen. They must examine their own complicity & learn what would actually help others feel safer. Challenge your gross friend. Know when your voice is helpful and when it is silencing. Let’s begin to have real conversations about getting more women into key positions. Our criminal justice systems approach to violence against women still needs an overhaul. Perhaps most importantly we all need to think about how we raise our children. The cycle must be broken. Too many women have already been lost.

Stone wall with protect your daughters scored out & educate your sons

My sign is vital, my hands are cold…

CW: Self Harm

Lately I’ve been having regular checks for the heart rate thing. The nurse who took my blood & vitals last week was really familiar. I had that strange I’ve definitely met you feeling, but also knew I didn’t know her, know her. I couldn’t place her at all until a loud clatter startled her. Her sharp intake of breathe shot me back in time.

She was the nurse I stunned with my self destruction in this same hospital many years ago. She either didn’t recognise me or correctly judged it best not to indicate that she had. She was friendly & kind, but the sound of that inhale shook me. I was back there, covered in blood & guilt.

I can so clearly remember walking into that triage room. Concisely explaining why I was there & seeing the doubt in her eyes. I could tell she thought the large towel on my arm was overkill. I knew she was weighing up how to nicely dismiss me. I was too tired to do anything other than unwrap the makeshift dressing & expose the truth.

Foggy picture of cars outside hospital. Words ambulance only painted on ground

The inner layers were blood soaked & the final one stuck to the wound. When I yanked it off with same the lack of self care that had led me to that room, she gasped. An entirely involuntary expression of what; shock? disgust? fear? I couldn’t discern, but I knew it wasn’t good.

The speed that she whipped through the triage routine was more about her discomfort than mine. I had long lost my objectivity. I sought treatment as a means of calling a halt to that cut. I had given up seeking enough. I knew that enough was a lie. When I looked at my arm I really couldn’t tell anymore if it was any worse than anything else I had done to myself. It was just another failed attempt to carve out some peace.

Peace that I knew was never coming. I already felt stupid & ashamed & so horribly guilty. For all the usual reasons and now also because it was obvious I had ruined this women’s night. She hadn’t bargained for my level of determined self loathing; I’d upset her. I felt selfish for not being more clear. I shouldn’t have allowed anyone to be caught off guard.

I wanted to be better. Do better. I wished I could give this nurse & everyone else the explanation they needed. I yearned to be somewhere else. I didn’t even want to do this anymore. My blades had long since lost efficacy. I could never cut deep enough. Never shed enough blood. The quiet I needed was evermore elusive. I was desperate and so fucking tired. Yet, I still couldn’t stop.

As I waited for her to finish with my blood pressure I was stuck in the past. Mired in the dread. Reliving the experience of having my arm stapled shut whilst already planning the next assault. Knowing I couldn’t escape the nagging voice in my head that insisted I must cut. I must earn any rest. I had to atone for sins I wasn’t able to articulate. I had to release all the fetid emotion with my blood.

When I left I felt blessed. And cursed. Blessed that I was wrong. I did escape. I have hushed that internal need for penance. Cursed because I still haven’t silenced it. There will always be triggers pulling me back. Days when my scars itch to be opened. You can’t play with fire & not get burned. The magic is remembering I know how to make it stop. I just have to wake up every day and choose this new, better life. Easy, right?

Black and white photo oh plus size woman looking at scarred arm

This is 40…

Fuck. This is it; the big 4-0. I am definitely not ready. Up until now I haven’t worried all that much about the number on my card. This year it all feels rather scary.

Pink birthday cake with sprinkles & 40

Forty is different. It’s just so huge. I have this sense of it being a before & after year. There’s the obvious sinking of youth. I’ve noticed a few changes on my face. In themselves they aren’t a problem, what they signify certainly gives me pause. I’m beginning to wonder how my body will stack up against the ageing process. Are my dodgy joints going to pack in altogether? Will my hair go white? Is menopause on the way?

ly is standing against a sandstone building arms stretched out wearing rainbow fringed top & blue velvet skirt

40 feels like the nail in the coffin of fertility. I know that hope is already all but extinguished. Hitting my fifth decade seems symbolic; a final snuffing. There are so many unattained goals. I expected to be living a different life by now. Time is whizzing by faster than ever. Getting through the ultimate to do list is increasingly daunting.

It’s not all black. I have built a life I’m proud of. I’ve filled it with bloody lovely buggers. All my people have made beautiful babies for me to adore. I’m doing the work I’ve always wanted to do. I feel loved. So, this is 40. Terrifying, but I’ve conquered the fear before. Why stop now?

ly is wearing a t skirt with the slogan ‘thou shalt never fuck a tory’ and blowing out candles on birthday cake

Nothing is like it was…

This month’s insomnia has been sponsored by infertility. My inability to reproduce occupies far to much space in my head & life. A big problem with healing from pregnancy loss is how taboo the topic remains. Things have improved a little, but on the whole I still feel like most people do not want to hear about it. Some have very valid reasons to shy away from those conversations. Others merely feel uncomfortable. Rightly or wrongly that leads me (& others) to feel we must keep it to ourselves.

Obviously I have attempted to combat the silence both in my writing & my life. I know it helps those who have lost & those around us to be more open. My own attempts to get on with it quietly were incredibly harmful to me. Still, there is so much that I have not shared. There are important people in my life that I’ve never spoken about my miscarriages or infertility with. It’s not a secret, but many things have prevented me from feeling able to discuss how I have felt.

Beyond emotion there are so many details that aren’t revealed. Common place aspects of miscarriage that are only ever referred to in hushed tones by those who have been there. There are various behaviours that I kept to myself because I feared they veered towards crazy. I’ve subsequently discovered they’re common rituals. Humans find comfort where they can, it would have been less frightening to know I was normal.

Most of all, the secrets are weighty. I feel laden with the obligation to keep the unmentionables shrouded. I don’t want to feel this way anymore. I definitely don’t want others strapping on this load. I need to let some of it go.

I say some, because, there are people & realities I cannot change. Crashing against solid stone will bring me no comfort. Thus, I want to reveal the parts that I can with this kind & ultimately faceless audience. Hopefully it can help others who feel burdened by conventional decorum. At the very least I may finally feel lighter.

I fear you’ll judge the box I’ve kept for 20 years. Adding items that others have hinted should not have been saved. Very few know it exists, the suggestion that it shouldn’t have has always hurt. I don’t think the positive tests from each pregnancy are gross. I’ve still felt the needed to hide them. Saving hospital bands & paperwork makes sense to me. I don’t understand why wanting to hold onto something (anything) connected to my children is morbid. I’ve been assured it is.

Positive pregnancy tests
Document requesting blood pregnancy test

I’m embarrassed of the few new born pieces I dared to purchase. So often I’ve seen childless women with tiny socks stashed in a drawer portrayed as lunatics. Dangerous, even. The type who might steal your baby. I hide the pregnancy, early years & baby names book. They’re packed away with the baby grow I saved from my niece’s early days. I thought one day I could frame pictures of them both babies identically clothed. Yes, the frame that would have housed those photos remains box fresh alongside. I have no need for this paraphernalia, I just can’t bear to throw them away. I worry this will be viewed as pathetic. Another crazy lady whose biological clock went bang. They were logical purchases when I made them. I was pregnant. When those pregnancies failed I was certain the next one wouldn’t.

I’ve never shared the pictures I took when my stomach started to change shape during my last pregnancy. I wanted to show off that development, but I didn’t think I was allowed. At the time it would have been tempting fate. Afterwards, there is instant unease if the subject is approached.

ly is wearing a red dress and taking a side on mirror selfie

Then there are the memories that will never leave and are never uttered. Unpleasant shards of the mess no one wants to witness. The exact tone a nurse used when she told me it was for the best because I was so young. Or the ice cold that runs through me everytime I see an examination table with stirrups. The fact that a miscarriage is more than blood and that more must be dealt with. I don’t talk about sitting alone in my bathroom trying to decide what to do with the bloody fragments of the child that will never be. Or the torture of bleeding a little & then having to wait. Clinging to hope through blood tests and scans. Only to be told you’re technically still pregnant, but it’s no longer viable.

Risk of infection, prolonged bleeding, the extent of the pain are all things I only become aware of through experience or via other women in private groups. We’re all so squeamish about the reality of pregnancy loss. I think it’s entwined with the patriarchal disgust of ‘female’ bodily functions. The same whiff of shame hangs over the process. I have felt I must not reveal anything too corporeal. Almost as though declaring the facts of my physical condition is gratuitous. Likewise, I have restrained aspects of emotional responses for the comfort others. It simply isn’t sensible to treat such a traumatic event with polite moderation. The inhibition has damaged me.

The older I get the more I seek clarity. Much of the pressure that society brings to bear obscures my view. I don’t want to submit to it anymore.

Pale white feet standing in Loch with pebbles

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.

I got issues, you do too…

Staying home is getting hard. My reasons for struggling may be different to yours. No doubt there will always be someone in worse situation than all of us. It’s still ok to feel whatever you feel. We’re living through a crisis that no one was prepared for. It’s perfectly normal to have no idea how to deal with such an unprecedented set of events.

A badly managed pandemic is going to mess with our heads. There’s no getting away from that. Aspects of this catastrophe might compound existing mental health issues. Such large scale uncertainty & fear may trigger symptoms in those who have never experienced them before. Please be gentle with yourself. It is totally normal to struggle with mood in extreme circumstances. It is not your fault that you find this overwhelming. It is scary to feel so powerless. Even more so to be dealing with such acute emotions in completely alien circumstances. You are allowed to be a mess. This shit is tricky, but it’s not forever.

Whilst we’re in the thick of it, it’s important to look after ourselves. Bin all the shoulds. Whatever gets you through the night really is alright. If you need routine, create it. If video calls & comfort food are your heart’s desire, do it. There are no rules. Complete your magnum opus or have a lot of long lies. Both are reasonable reactions. As long as you’re not endangering yourself or others, it’s all good.

Pale legs with green tattoo lying in bed

If you’re starting to find that you don’t know how to handle the ‘new normal’, I have a few pointers. I’ve had years of wrangling a crazy brain and unruly body. It’s left me quite well equipped for societal disaster.

It’s my experience that taking care of everyday practicalities can relieve some stress.

  • Make a budget. If you know exactly what’s coming in it is easier to juggle what’s going out. If there are bills you will have difficulty with contact companies ASAP. Most big organisations are offering payment breaks, reduced payment plans etc at the moment. It feels so much better to not have the worry hanging over you. Check what financial aid is available to you during this crisis. There are various government schemes that might help make ends meet.
  • Plan in advance. Check each day for shopping delivery slots. You can usually have two booked at a time. Some supermarkets offer priority to people most vulnerable to covid 19, it’s worth checking if you qualify. I always buy some food that needs little preparation in case I don’t feel up to cooking. Speak to your GP about how to best request & collect prescriptions. Don’t wait until you need your medication, running out is incredibly stressful. There are delivery services available for people who cannot leave their house.
  • Make lists. I love a list. When everything is swimming around in my head it feels hectic. Order resumes when I can see what I need to do on paper. Plus ticking things off is very satisfying. I make a list for each day. I spread housework, life admin & work throughout the week. Leave time to rest & between hated tasks. Prioritise what’s most important for each day. Do not freak out if you can’t get everything done. Focus on the essentials for that day. Dishes in the sink won’t hurt you. I usually make separate lists for things I need to buy, calls I need to make & appointments I need to keep. Our current situation limits those things somewhat.
  • Permission to deviate. Let yourself scrap it all if you really need to. Just don’t ditch it forever.

Most of all, be kind. Indulge in whatever makes you feel good. Eat the treats. Send yourself flowers. Drink the tequila. Keep talking about how you feel. Ask for help if you need it. Everyone is dealing with their own variant of yuck; let’s try to take care of ourselves & each other.

Margarita in cocktail glass with lime wedge

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