5 things I liked in April…

April has been a very up & down month. Lots of really lovely time spent with my littles & their people. Also, an equal amount of time despairing at current events & struggling with mood dips.

I have coined the name ‘Depression Light’ for this state. It’s not deepest, darkest agony. More of an ugh that makes everything feel a bit futile. I am generally anxious and really not sleeping well. Sometimes it’s the little things that keep you afloat. These have been my buoyancy aids this month.

Spring Lambs

Taking my niblings to see the newborn lambs at a Farm Park was very life affirming. Watching the kids pet the baby lambs & their Mums was really wonderful. I even got a wee snuggle in myself. We learned that most sheep have twins, some have triplets & even rarely have quads. Imagine having all those little legs inside you? Animals are incredible. They mostly give birth all on their own and their babies are up on their precious little legs within 20mins. All that & they are adorable.

Iron Strawberry

My silly body doesn’t properly digest iron. To combat the resultant anemia I have occasional iron infusions and daily iron supplements. My liquid iron came in a revolting mint chocolate flavour. It did not taste at all like chocolate. The best description I can give of the flavour is a gritty, oily minty nightmare. I did not enjoy swallowing a spoon of it twice a day. The arrival of this month’s prescription brought a partial reprieve; strawberry flavoured iron! Honestly, it doesn’t taste good, but it is not the horror show of the minty choc. Small victories.

Vinyl Bonding

One of the things my niece requested for Xmas was a record player. She’s 15 and very into all things retro. It came as quite a shock that most the retro she’s loving hails from my hey day. Once I got over how old that made me, I have been loving introducing her to classics from my youth. Turns out we have similar musical tastes. I have been loving sending her old albums and the long FaceTimes we have to discuss them. I was worried that I’d lose my cool auntie status once she hit high school. Alanis Morrisette, Jeff Buckley and our joint penchant for saying it how it is might just buy me another few years.

The ‘Beautiful’ Game

A funny thing happened whilst I was doing some research for a piece. The piece was on football culture, I am familiar as an observer. I grew up in the West Of Scotland surrounded by football fanatics. I know a bit about football culture. I don’t however enjoy the game. It bores the life out of me. However, during my research I discovered something I unexpectedly love. Stick to Football, is a podcast (it’s filmed too) where ex footballers talk about football. Except they stray from the topic and it’s hilarious. Especially Roy Keane. I doubt I could have told you who he was a few months ago, I am now a bonafide fan. I do have to fast forward when they get bogged down in tactics and players I’ve never heard of, but I still look forward to a new weekly episode. I even ended up reading both of Keane’s books. Those close to me find it hilarious that I, the vocal hater, am an avid watcher of something with football in the title. Hey, you can’t help what you love.

Comfort Reads

Whenever I’m feeling down I turn to literature for comfort. When my insomnia starts acting up I need a steady stream of familiar favourites. This month I have been re reading some of my most loved novels. Jane Austen is a go to, I love sinking into her world. I started the month with Persuasion & am finishing it off with Mansfield Park. You can’t beat a clever woman getting the happy ending she deserves. Also at the ready was Barbara Trapido. The Travelling Hornplayer holds a special place in my heart. I found it at a difficult time and it has brought me peace on every read. It even partly inspired one of my tattoos. Trapido weaves intricate stories with overlapping characters. A truly beautiful writer. Her only flaw being the focus on middle class/oxbridge set, but the storytelling is so good that I can forgive it. Finally, I sought refuge in Carrie Fisher. Fisher was the first writer whose words expressed my experience of mental illness. She was a genius; no one on the planet ever wrote like her. This month I choose Delusions of Grandma & Surrender the Pink, but I suspect I’ll be diving into her catalogue again in May.

What gets you through?

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Life is a rollercoaster…

It’s been a mixed few weeks. The Easter holidays presented lots of opportunities for auntie time. Unfortunately, my body has seized every opportunity to mess with me.

My first Easter adventure was a trip to The Burrell Collection. I spent a lot of time here as a kid and always enjoyed it. It is so nice to share it with the next generation. The boy absolutely loved all the swords and armour. I loved watching him explore.

Dress – Forever 21 Tights – Snag Boots – Air Cloudies

The Burrell is really good on the accessibility front. Wide flat spaces that are easy to manoeuvre. Plenty of places to sit throughout, plus light weight stools you can carry around with you. Spacious lifts to all floors. It is a stunning buildings, with exhibits to entertain all ages.

As you know, I’m big into my glasses. I can never have enough. Thus, I was delighted to collab with Firmoo. These blue beauties have been on my face since the moment they arrived.

Glasses – Firmoo *

Next up was a little dip with my bestie & her brood. Swimming is my favourite, not least because I can properly carry on with kids. In the water I can move with ease. It feels so good not to be in pain every second. It’s even better to play a shark, spin the kids, help them ‘swim’. Much fun was had even if my littlest niece was frustrated that she needed to hold on to me. She was determined that she could do it herself and was not convinced when I explained that she couldn’t swim. Swimming with littles requires clothes that can be easily pulled on whilst squeezed into a tiny changing room with a wiggly child. These wide legs were perfect.

Trousers – Pockets and Sedition Cardigan – Monsoon

A few days later I was back with the treesome for the twin’s birthday. I can’t believe they are three already. It’s a cliche, but kids really do grow too fast! I still call these two babies, which is wishful thinking. They are so smart & funny & full of love. It is an honour to be part of their lives. We had a classic children’s party; balloons, cake & pass the parcel. It was a joy.

On the flip side my insomnia is in full force. Tossing & turning for hours every night is torture. I lie there exhausted, but feeling this horrendous unsettled sensation all over. The more I dwell on this physical embodiment of anxiety, the further away sleep gets. Every day feels like wading through mud. Surviving on minuscule amounts of sleep is the absolute worst.

When my body isn’t refusing to sleep, it’s passing out. Pots is kicking my arse. My latest fainting disaster resulted in two small fractures of my hand. The good news is that the bones are fast healing. The bad is that it is my walking stick hand and weight bearing is not easy. I’m feeling overwhelmed about how this is going to impact my mobility. Fingers crossed the predicted 3 weeks healing time is correct.

I might have to wear an ugly splint, but my nails look great.

Thankfully Bronan is always around for snuggles. A purring cat is a great stress reducer.

* Use my code Kerr50 for up to 80% off.

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Something to talk about…

Time to talk day has just be crept across my timeline. I’m hoping it’s a testament to how attitudes have changed towards what is needed in the mental health sphere that I’m only being alerted to it at 9.30pm. Despite my cynicism I clicked and perused the website.

Sadly, it’s the same old story. Like most other mainstream advocacy for mental illness, Time to talk fails in tackling the real barriers people with mental illness face. Of course it is important to dispel stigma around mental health problems. It is also great to encourage people to support friends, colleagues etc. The tips on how to approach such conversations are fairly helpful. My issue with this model is that I don’t believe it acknowledges the depth & breath of the problem. In fact, I would go further in saying that the offering a listening ear platitudes can even diminish the experience of many with mental illness.

I’m 43yrs old and I have managed various levels of mental Illness almost entire and life. In all of that time the NHS has been under resourced in the mental health sector. As the years have gone by funding has been slashed and the problem has grown. We have been at crisis status for a very long time. There has been an uptake in mental health awareness. Campaign after campaign successfully identified warning signs and urged us to seek help. Unfortunately, the help requested is most often not forthcoming.

At the moment just getting a Gp appointment can be an enormous struggle. From there referral to primary mental health services always results in landing in a very long waiting list. If you can survive that wait, the treatment available can be limited. The first line is usually a limited course of CBT (cognitive behavioural therapy). CBT can of course be effective for some issues. It is not an answer for more complex mental illness. Alongside CBT there are a variety of helplines and websites, which can offer valuable information, but do not constitute treatment. There are of course psychiatric medications. These can be life saving and do improve the lives of millions. However, they are not magic, most often they must be used in conjunction with other therapies.

A referral beyond the intial interventions already mentioned is difficult to obtain. Infuriatingly, not everyone merits a place on their waiting lists. Those who do make it are in for another privilege wait. The quality, duration & efficacy of what is available at the end of that line is unknown. There are excellent professionals, treatments & resources, but they are stretched beyond thin. There simply aren’t beds, funding or staffing to provide the appropriate treatment & support for everyone who needs it. The result is, most people are shirt changed. Problems that could be caught early are allowed to progress. Serious problems become emergencies. In short, our population suffers more mental illness and become trapped in illness for longer. Some, forever.

Beyond the personal tragedy, the social and economic toll this takes is clear. People become unable to work, care for their families, participate in their communities, they then are laden with whole new set of problems. This of course negatively impacts their mental health and round they go. More people end up in crisis with no where to turn but emergency services, which are not equipped to render proper treatment. Again worsening the situation of the individual and eroding resources available overall. Apply this cycle across the board and it becomes obvious how vicious it is. It is an enormous widespread problem that can not be solved without massive funding, recruitment and a re evaluation of government policy.

Atop those failings is the fundamental shortcomings of the message itself. Breaking down stigma is vital. However, I think the focus of these campaigns, asking how people are feeling, actually is listening to the answer and so on, don’t go nearly far enough. It gives the impression that all mental illness can be easily solved. The adverts and literature are always about depression or anxiety. They show the palatable side of these conditions; someone who has a difficult period and with a little help from their friends gets better. Images of people crying or holding their head in their hands distort the reality of living with such conditions. When someone can’t get out of bed or in the shower for days on end, when they can’t function or find relief despite those caring chats it’s a shock. A check in with the Gp & some anti depressants won’t cure everything. Mental illness encompasses a myriad of conditions. Symptoms can be extraordinarily distressing and debilitating. Some are enduring illnesses that require complex and specialised treatment. Conditions like schizophrenia, Ptsd or Bpd are rarely discussed. Instead they’re sensationalised & misrepresented in the media. Perpetuating dangerous ideas about those living with certain conditions. The fear and shame have not been dispelled. We’ve merely carved out a tiny category of ‘acceptable’ mental illness.

The recovery narrative presented in mainstream mental health advocacy is too simple. Not everyone gets better. Lots of people instead learn to manage their mental illness. Others have recurring episodes. They are still smart, loving, valuable human beings. When all society is presented with is neat stories of struggle, seek help, return to health forever expectations are unrealistic . Those who don’t follow that template become doubted. Compassion turns to thinking they’re not trying hard enough or maybe they’re exaggerating. Stigma persists. We need an informed public. Not only on the broader experience of mental illness, but on ways to bring about change. People should know why our services are failing. The power of our voices and votes must be understood. We also need education around navigating the systems that exist. Everyone should be aware of how best to advocate for themselves and loved ones. We do need to talk, it’s just a much bigger conversation.

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Stormy weather…

I’ve never feared storms. On the contrary, I mostly find them comforting. Thunder, gales, torrential downpour all increase my sense of safety as long as I experience their strength from behind four walls. Nothing feels quite as cosy as listening to wild weather batter around one’s secure domicile. The sounds are soothing. The gratitude of having a comfortable place to take shelter brings a warm contentment. Similarly, I enjoy rough seas. I’ve always preferred a desolate winter beach to one that is sundrenched. I find a listing vessel thrilling. I hope for a crossing choppy enough to produce that I don’t know where my foot will land when I take a step sensation. Crashing waves, howling winds, angry skies; tick, tick, tick.

There is only one niggle. If Mother Nature is unsettled in conjunction with my mind things can get rocky. Only a very particular mood presents a problem. Clear cut emotions pose no threat. If I’m sad the rain feels appropriate. Angry and my dirt is matched.However, if a storm hits when my mind is in conflict with itself, batten down the hatches. Sometimes what I want to feel clashes up against what I actually do feel. Other times I can’t decipher exactly what I think or feel. Then there are the overlapping, opposing emotions running around up there. All of which are heightened by a natural uproar. Somehow nature’s dramatics heighten my confusion. I can’t straighten out my insides & the untamed outdoors gives the mess a false significance. Querulous suppositions that might otherwise pass are given weight. Being aware of this does nothing to lessen the frustration. One can’t logic their way out of a metaphorical brick in the stomach. 

Thus tonight I am in flux. Craziness swirls beyond my bedroom window & behind my eyes. I can’t unpick the tangle. Perhaps I’ll know what I feel tomorrow

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How I’m feeling now…

I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.

Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.

I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.

Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.

Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.

Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.

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This week I was mostly…

Taking it easy. I’ve been trying to write, trying to sleep and listening to these tunes.

Open up Your Door by Richard Hawley was playing in a waiting room. It’s pretty good waiting room music. The gentle jingly instruments swelling into smooth waves has a soothing effect. Hawley’s smooth easy listening, but cooler voice pleasantly washes over you. The lyrics are almost unimportant, the overall sound is the appeal.

I can’t work out where I first heard I Think I Like it When it Rains, but it immediately stuck in my brain. A little Googling later I discovered it was by Willis and promptly added it to a playlist. It gives me a Lennon, Don’t Let Down vibes. I love the hopeful melancholy. It encapsulates the feeling of one of those thinky rainy days.

If I were a fish corook (feat Olivia Barton) is the catchiest, feel good Tik Tok hit. I can’t resist the cheery message and choiry chorus. If you need a little sing a long pick me up this is the one.

I am of course loving all of Lewis Capaldi’s new releases. I am dying for the new album, How I’m Feeling Now in particular struck a chord. I respect his openness with regards to mental health and his ability to capture the experience in his music. The desperate frustration of battling yourself comes through. Anyone who has dealt with depression or anxiety will feel it when he sings,

‘I’m always stuck inside my fucking head’

I hadn’t heard of Eloise until three days ago and now Friends Who Kiss is on my repeats. I like her gentle take on the break up genre. Stripped back and bitter sweet; ‘love is not in love’.

Bronan has been helping with the resting.

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More than embarrassing…

We’re all familiar with the reminder letters and campaigns urging us not to miss our cervical smear test. We are rightly told how important they are in detecting cancers early. I’m glad these tests are available. I am also happy that we are educated on why these tests are so necessary. However, I find myself increasingly frustrated with the messaging.

Gloved hand holding a clear speculum

So often when a person or organisation wants to encourage people to attend cervical screenings they focus on how easy it is. We’re told it is silly to be embarrassed and it will be over in a flash. Don’t risk your life over 5 mins of feeling awkward is repeated. Smear tests are confidently declared to be not painful. Just a little discomfort, nothing to worry about. While that might be true for lots, it is not full the picture. The patronising assumption that people miss smear tests because they’re self-conscious is harmful. Many people have valid reasons for their reticence. Addressing those issues would be a more effective way of increasing uptake numbers.

Research from Jo’s Cervical Cancer Trust and Rape crisis revealed that 72% of women who have experienced sexual violence have skipped or delayed a smear test. When you consider that at least 1 in 5 women have been sexually assaulted you can begin to understand the scale of the issue.

Birth trauma & pregnancy loss also impact a significant portion of those who require smear tests. Gynae exams & cervical screening require being in vulnerable positions that can trigger a trauma response. Recent research is finding that baby loss & birth trauma often results in PTSD. So, it’s easy to see why a smear test would be not a easy exam for those who are affected.

There are also medical conditions/physicalitys that can make a smear test very difficult. Conditions like ,vaginisimus, endometriosis, cervical ectropion and more can make smear tests painful or difficult. Cervical position, vaginal dryness, menopausal changes and FGM can also impact how a smear test feels.

Trans men may find smear tests hard for all obvious reason. Dysphoria, stigma, discrimination and more. I’m sure everyone can understand how having to deal with any or all of those things is a frightening prospect. It can also be difficult to access information; trans men may not be invited for cervical screening, there is confusion about who requires the test etc. Of course this may be combined with any of the other issues on this list.

This is by no means an exhaustive list. I just want to be clear that there are many real reason for a person to avoid cervical screening. That being said, how can we make it easier? Well, there are actually a lot of accommodations you can ask for. I don’t see this talked about enough, so I wanted to share that information.

Before I get into the details, I want to be clear that you do not have to disclose anything you are not ready to discuss. You can ask for accommodations without revealing your trauma.

Before the Test

You can ask you GP to take your name off the automatic reminder list if those letters are distressing.

Ask for the test to be performed by a person of your preferred gender.

If you have an established relationship with a Dr/Nurse you can ask to have them do your smear test.

Make an appointment to talk about the smear test. Discuss anything you need to talk about. Be that how the test is done, why is it done, your fears, worries etc.

Request a double appointment to allow time breaks, extra time.

Plan what you will do after the test. You may not feel up to returning to work or you might not want to be alone.

The Test

Take an emotional support person to the appointment.

Request a chaperone be present for the test.

Ask to talk through the ‘mechanics’ of the test before you start. Have the Dr/Nurse show you the instruments used.

Tell the person performing the test any words or phrases that could be triggering for you. If there are words of comfort that are helpful for you ask them to use those.

Explain how heavy/light a touch you are comfortable. If there are areas you would like them to avoid touching if possible, tell the Dr/Nurse.

Ask to insert the speculum yourself.

If you are concerned about specific trauma/pain response discuss that with the Dr/Nurse. For example tell them this part of the exam is usually painful for me or I might be unable to chat/answer questions.

Agree a plan of action beforehand; what would you like to happen if you are triggered/pain is too much. You can decide on a word or sign to use if you are in distress.

Combatting Pain/Distress

Mindfulness Techniques – Exercises like naming three things you can see, smell, hear can help route you in the now.

Distraction – Play music, make small talk with Dr/Nurse, your support person.

Squared Breathing – This sometimes helps me get through acute pain/the onset of panic. Breath in for 4, hold for 4, breath out for 4, hold for 4. Repeat.

Take a comforting object. Fidget object. Scent that invokes calming feeling. Hold support person’s hand.

Discuss having medication prescribed. Things like benzodiazepines can help with anxiety, allow your body to be less tense. Maybe you need a stronger pain medication to deal with the test/after effects.

Know Your Limits

It is ok to stop at any point. If any part of the process becomes too much, stop. You can reschedule the appointment. It is ok to try as many times as you need. This test is for you. You are not obligated to fit into anyone else’s timeline or expectations.

Smear test are an important part of early cancer detection, but your whole health & well being are equally important. Shaming people or dismissing the reason for their reluctance does not help. If we are to increase the uptake rates we need to acknowledge what is actually preventing people from attending. We also need to facilitate ways to address those concerns.

If you require more support you can contact :

My Body Back Project

Rape Crisis (Helpline – 08088 01 03 02)

Action For Trans Health

Jo’s Trust

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A big black hole…

Do you have a voice in your head? Your own personal narrator. Don’t forget your purse, ooh that’s a nice skirt, my head hurts, what should I make for dinner, did I answer that email? I’ll sit down at that next bench…

A running commentary guiding you. Questions, ideas, reminders. Busy, busy always going. An echo of you, so constant that you often aren’t even fully aware of it. Still there when you need it, though. Working through options when you’re not sure which is right. Slowing your tongue before it spits out something stupid. It searches through your memory catalogue and sounds an alarm when you might be missing the danger. It’s useful. A comfortable, familiar accompaniment to life.

Sometimes that voice goes rogue. It’ll bark at the slightest disturbance. You drop a cup & you’re a dickhead. It starts warning off attacks that aren’t coming. Tells you everything you’re doing is wrong. Maybe sometimes you are able to make peace. You both pause, think again and agree that perhaps that assessment was too harsh. Deep breaths or a task accomplished might win the other you over. On other occasions the voice knows its right. All aspects of your life are disastrous and you are entirely to blame. The inner critic skewers you; drives a fresh hole through all your crap.

Black Smokey hold on white background

It takes training to win a battle with yourself. You must master tricky moves to quiet the bitch in your head. There must be people who manage it. I’ve yet to completely get the knack. My internal voice is spiky. She (I) love to find myself at fault. Guilt comes easy and in no proportion to the perceived sin. My head is well versed in all the hurtful language I rail against. Dismissing your own internalised ableism, fat phobia, capitalist propaganda is tougher than talking down some third party arsehole. Anyway, to a certain extent I have accepted that my silent commentary will always do this. I’ve learned to challenge the initial thought. Wrestle it into logical submission. Sometimes I win , sometimes I lose, but I expect the onslaught.

Which brings me to why I’m engaging in this session of blog therapy. Lately, the voice in my head has developed new habits. She has us on perpetual clueless alert. My warning siren is stuck on active. I can’t calm down. However, when I question the need for this hyper vigilance the know it all in my head has zero answers. In fact, I can’t find answers for much at the moment. When I request help my internal dialogue tells me it doesn’t know.

What am I scared of? I don’t know.

What do I need today? I don’t know.

What should I eat? I don’t know.

Who will I pitch this to? I don’t know.

Should I take more painkillers? I don’t know.

Is this good enough? I don’t know.

What do I want? I don’t know.

Did I say the right thing? I don’t know.

Am I ok? I don’t know.

I’ve been anxious & uncertain before. Decision making has always given me trouble. I’ve just never had such a blank in my head. There’s always been a conversation. Typically I’d scroll through all the things in my life that could be a concern. I see it through to the worst possible outcome & decide how I could manage that. Once I’ve tackled that I can be less consumed by the worry. It’s not a perfect solution, but I have some success with it.

At the moment, there is no discussion to be had. This is free floating anxiety ALL THE TIME. I wake up jittery. I lie in bed nervously trying sleep and I am on edge every minute in between. Identifying real worries has no impact. At the end of that process the voice in my head is still shouting panic! I’m not a stranger to unresolved aniexty. I have PTSD, it comes with this territory. I’ve dealt with episodes of hyper vigilance. I do react to triggering stimuli. I’ve been in the depths of unknowable depression. This just feels very different.

The barbed inner voice can usually be relied upon to give me something to work with. Even if my instincts are brutal, I have a jumping off point. Now everything is so vague. I’m stumbling around in a room full of nothing. This isn’t a period of great change. I am not attempting to make life changing decisions. I have no idea what is going on & neither does my brain.

Black & white image of ly looking out over a beach. Taken from behind.

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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

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