fear

Still…

~ somethinginthewayshemoves

I’m doing well. I really am. When I compare with my previous self there is no doubt that I’m in a much better place. Still, no matter how well I become, the devil on my shoulder remains.

That devil is destruction. Self destruction. Sometimes just flashes; a momentary thought of blood or blades. Other times I experience the deepest longing to ravage my skin. My reaction to pain is still, more often that I would like, the desire for more pain. Not the same kind of pain. A pain I can control. I have worked at working myself out. Learning healthy coping strategies, questioning myself, pinning down what I feel and why have been an ongoing process for decades. I am better. I haven’t self harmed in a very long time. I still want to, though.

Not everyday. Not in the compulsive ‘can’t think about anything else until it is done way’. I don’t berate myself for not cutting or create a mandatory timetable. That is gone. I have conquered that aspect of my demon. My problem is, the underlying urge never really goes away. In times of trouble my mind thinks it knows what will ‘help’. I suppose it’s like being an alcoholic. There will always be days when one really wants a drink, except in my case it’s a scalpel, not a bottle I want to reach for. The weird bit is that these thoughts aren’t reserved for awful days. Occasionally, for no reason whatsoever, a wave of craving will hit me. Honestly, my toolbox isn’t particularly helpful in those instances. It is very difficult to reason with a nonsensical ghost in your head. I’m left with sheer determination & an awareness of how slippery the slope is.

Strangely, I rarely hear anyone talk about this. There is much discussion about the warning signs for self harm, the damage it causes and how to stop. There is even information on how to treat wounds and hide scars. It’s all very much a before and after narrative. People are sick and then they recover. As I’m sure you’re aware, very few things are ever that simple. We generally understand the complex nature of addiction and mental illness. For example, much work has been done to educate people on eating disorders. Most people know how difficult they are to manage and recover from. It’s generally understood that people are not concretely cured. It is a process that involves relapses and continuous effort. Disordered eating becomes compulsive and corrupts thought patterns. Often nothing is as important as maintaining the disease. Likewise substance abuse takes over a person. The priority becomes obtaining the substance of choice. Whilst no one thinks that’s good or healthy, we do understand that people don’t want to be controlled by an illness. These are topics that are commonly discussed; we have compassion and celebrate those who have worked towards recovery. Not so for self harm.

Self harm is still taboo. There isn’t really any mainstream discourse of its realities. No one is making serious documentaries or accurate media portrayals. Celebrities aren’t telling stories of how they won their battle with self harm in the way they regularly do regarding addiction, eating disorders or issues like anxiety. The latter are viewed as brave and inspiring, self harm is still seen as disturbing. Even talk of relapse or the ongoing nature of recovery are received positively, but discussions like I had above is very much in the ‘crazy’ category for most. Despite the fact that statistics show the prevalence of ED & SH are fairly similar and that they share many commonalities, the public perception is very different. Even years into ‘recovery’ it frustrates me. The stigma sticks. I can carry the weight of other people’s judgement now. That wasn’t always the case and it won’t be for many still in the throes of illness. The fear of the judgement creates an impediment to seeking help. That delay is extremely dangerous. So, yes, I’m still talking about this because hardly anyone else is. I don’t believe people get better in silence and I think it helps to be prepared for what better might actually look like.

If you like what I do you can support me on Patreon.

Design for life…

~ somethinginthewayshemoves

Yesterday I was doing a little insta scrolling when I came across a really strange post. It’s from Michelle Ogundehin an interior designer who is on that design competition show on BBC. I followed her for pictures of pretty rooms. Thus, I was shocked by this abrupt change in content.

I have a problem with these kind of alarmist statements. Exercise is good for us. Everyone knows that. Encouraging people to try new things, enjoy moving their body, take a nice walk is great. Scaring the bejesus out of folk with you’re going to die, is not. Life is complicated. Not everyone has time, money or the physical ability to partake in the 30mins/5 times a week suggested in this post. The comments were flooded with people pointing this out. Many said the tone was all wrong & the content ableist. Michelle’s replies ranged from patronising to snarky. Then she turned off commenting. As a disabled person who has very few exercise options I tire of this exclusionary narrative. I also believe it is counter productive; fear & shame are not effective long term motivators.

On a wider point I’m throughly sick of how many unqualified people stray into the ‘health & well being’ sphere. Even in my carefully curated timelines I find it hard to escape grifters spewing pseudo science. The scope appears to be continually growing, manifestion, fad diets, alpha males, mlms, alternative cures… the list goes on. All making unsubstantiated claims & usually making buck. Ten minutes on google is all it takes to see that almost all of these people are unqualified. Some may be well meaning, most are shameless charlatans.

Curious as to what inspired this shift in content I took a look at Ogundehin’s substack. Amongst the expected design tips there are a lot of posts about ‘health’. She covers topics I honestly don’t think she is qualified to offer advice on. She does mention that she’s not a medical professional. She also confidently declares things fact that I am not certain stand up to much investigation. Her sources are suspect, her tone is off. She uses phrases like ‘food be thy medicine’ and writes overblown articles on the dangers of gluten. To me, it seems like another person who has realised there is money to be made in the wellness world.

Before I wrote this I did a little research. I wanted to check I wasn’t mistaken about her qualifications. Michelle appears very qualified for roles related to design. She has held impressive positions in editing, journalism and design. However, I can’t find any evidence of training that would make her a go to on food or health. She does mention in her substuck that she has started studying nutrition, but by her own admission is on the first module of what sounds like an introductory course. Health is a serious topic. I’m all for sharing our experiences and what worked for us. However, I truly fear the idea of people making impactful changes in their lives based on the pronouncements of unqualified people.

Please be careful out there. Dig a little a deeper before taking things you find online as fact. That includes me! I research topics before writing about them, but that does not make me an expert. I want readers to check things out for themselves. I always provide resources and caveat my opinions. In the case of anything related to your health, my advice is always consult a Dr.

If you like what I do you can support me here or on Patreon.

Something to talk about…

~ somethinginthewayshemoves

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.

If you like what I do you can support me here or on Patreon.

More than embarrassing…

~ somethinginthewayshemoves

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

If you enjoy my writing you can support me here or on Patreon.

The Fear…

~ somethinginthewayshemoves

I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.

ly is in a hospital bed wearing a face mask and hospital gown. She has leads attached to her chest

On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.

I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.

I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.

My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.

For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.

Black cat snuggling on blankets being petted

If you enjoy my writing you can support me on Ko-Fi.

Don’t leave me this way…

~ somethinginthewayshemoves

Since we seem to be heading full steam into SUCK IT territory for the disabled & chronically ill I wanted to talk about my experience of covid. There has been an overarching theme of those with existing health conditions being dispensable from the start, but now it’s pretty much being explicitly stated by our leaders. I want everyone to know how frightening this is for those of us that so many are happy to sacrifice.

As a person with chronic health issues (arthritis, fibromyalgia, stomach disease, anaemia, PCOS) I took covid seriously from the beginning. Lockdown was a complete lockdown for me. I stayed at home. I had no visitors. All my essentials were delivered. The only contact I had with anyone was the occasional driveway visit. My sister or bestie would stand in my drive and I’d sit in my open from door. I didn’t touch another human being or leave my house for months. I had hospital stays without visitors, didn’t celebrate my 40th birthday and spent Xmas 2020 at home on my own. My lockdown stretched on further than the official stay at home orders. Since early 2020 I have spent the majority of my time at home and I have been scared since the beginning. I had no idea what covid might do to me. I’ve experienced catching bugs or viruses that were no biggie for others, but sent me to the hospital. Every time I heard of someone dying being caveated with they had existing health problems, I knew that could be me. This pandemic has always been an emergency situation for me & those like me.

I now regularly see family & one close friend. I wear a mask, sanitise, stay outside as much possible. If I must be inside I go to places that follow all covid precautions and I exercise extreme caution. Doctor appointments aside I leave my home about once a week. I still have everything delivered and avoid contact with those outside my immediate circle. I do home tests before and after I go anywhere. With a couple of exceptions a restricted life has become my normality.

I contracted covid 19 in oct 2020. At that point I was spending 99% of my time alone at home. I was seeing only my sister, mum & nephew and wasn’t visiting anyone indoors. I still managed to catch the virus despite none of the family I was in contact becoming infected. The acute illness was not severe. It lasted about ten days & felt like having a stomach flu. I had more gastric than cold/flu like symptoms. My cough was very mild. I lost my sense of smell & taste. I felt terrible, but I didn’t require any medical attention. In the following weeks I really struggled with breathlessness & racing heart but assumed this would pass. It did not.

15 months later I am still dealing with long covid. My already limited mobility has been massively impacted. I become breathless even moving around my own home. I have to sit even to brush my teeth, make a cup of tea etc. I have overwhelming fatigue, brain fog and widespread pain have markedly intensified since having covid. I experience palpitations and chest pains on the slightest exertion. My heart rate regularly climbs to heights whilst trying to complete the most basic of tasks. I have been hospitalised on 4 occasions because my heart rate would not slow down to an acceptable level. Drs can monitor and treat symptoms, but they know almost nothing about long covid. They can’t tell my why these symptoms persist or if they will ever go away. My chest x rays are clear, my heart is not damaged. The tachycardia & breathlessness are a covid mystery.

A frightening and very real mystery. It is scary to feel as though your heart is going to burst out of your body. Or to be so out of breath that your head spins and chest burns. It’s a million times more terrifying to be told that the experts have no idea why it is happening or how they can make it better. Fear has been common thread. 2021 has been a really hard year for my health. All of my existing symptoms have worsened. The added problems have caused me serious problems and I think I have picked up every cold, stomach bug & infection going. All of which has been alarming. I’m worried that the next illness or flare might be the big one. I’m stressed about all the work I can’t do and the financial repercussions of that. I am chilled at just how little I am now able to do before becoming too exhausted/sore/dizzy/breathless to continue. Most of all I am terrified of what could happen if I get another variant of covid.

I am fully vaccinated (& boosted). I have masks galore, anti bac in every bag & pocket. I still leave parcels & deliveries by the door for an hour before I touch them. I bought a device to sanitise my phone. I’m never in crowds. I rarely go out. I’m acutely aware that I was being even more careful when I caught covid the first time. Every single aspect of my life has been affected by this pandemic. I know I am not alone. Most people have sacrificed. Many are in the same boat as me & others in far more treacherous vessels. I understand that this has been a collective trauma that everyone is eager to put behind them. I just wish more people would understand that this isn’t over yet.

When you justify the need to ‘live with covid’ by saying that most healthy people only experience mild symptoms I am the exception in that sentence. People like me will die or be permanently disabled if we ignore how dangerous covid still is. I understand that you want your life back. You want to stop worrying and missing out. I do too, but if we throw caution to wind now it’s not without consequence. If we pretend that covid is just another part of life we are throwing the sick, disabled, old & vulnerable to the wolves. I believe that those lives are worth as much as any other. Our needs are already ignored in so many ways, please don’t abandon us altogether.

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And just like that, I’m not ok…

~ somethinginthewayshemoves

I have just finished the first episodes of the much awaited And Just Like That. I was excited for the return of the S&TC girls (I know). I loved the original. I even liked the slightly dodgy films. I was so happy to see them all again. And now, I am not ok.

Poster for and just like that featuring Sarah Jessica Parker , Cynthia Nixon & Kristin Davies

If you’re planning to watch & don’t want me to spoil it, stop reading now. If you’re still here, how are you doing? Did you survive that first episode? I was so unprepared. Not until Lily started playing those foreboding notes did I suspect that Big was in danger. Those sneaky fuckers got me. As soon as the scenes started cutting from big on the bike to Lily on the piano; I knew. I didn’t want to accept it though.

I was really enjoying happily ever after with Carrie & Big. He’s still hot. Still colouring outside the lines. Still an old school romantic. Carrie is still Carrie. The writing is good. The shoes are better. It was all working until they broke my heart. This is not the forever I was looking for. How can Mr Big be dead? Why on earth did the writers think we could cope with this storyline?

Still from and just like that. Carrie cradling Big in her arms

I can’t stop crying! Listen, I always cry at the sad bits. Books, films, tv shows, life. If it’s sad, I cry. However, I think after 2yrs of a pandemic and all it brought maybe everyone’s emotions are a little raw. I find it increasingly difficult to view a whole range of media. The news is obviously a very rough watch. Fiction isn’t really much easier. The stress, fear, anger, grief has been turned up so high in real life that I really struggle not to absorb those emotions from fiction. I start feeling sad about a storyline and before I know it I’m flooded with a million real things to be sad about. Repeat for anger and so on. I’m beginning to think that Covid has left even more of a mark on me than I realised.

I’m wondering if others aren’t feeling the same. We’re all aware of the trauma covid brought. Huge losses & life altering changes. I’m not sure we have properly thought about the long term impact on our collective psyche. Lots of us were lucky enough not to lose a loved one. Many careers have not crashed and homes are maintained. A significant amount of people didn’t even get sick. Nonetheless, everything feels different. Also, the same. Is this chiming with anyone?

I feel like the world should have changed. So much of it hasn’t and that feels incompatible with where we are now. It’s hard to climb out of all those extreme emotions we’ve been swimming in. It’s even harder not to feel the need to revolt against those who still can’t bring themselves to care. I can’t articulate it perfectly, but I feel something has shifted. It could be wishful thinking. I hope not. It’s like the other shoe is just dangling from a single toe now. The people who least expect it might be about to get squashed.

ly wearing tortoiseshell glasses leaning her head on one hand and looking fed up

Well, that was quite the leap. From a 90’s reboot to revolution in less than a 1000 words. I think that might actually prove my point; there’s a lot bubbling right under the surface. Anyway, in brief, whether you’re sad about John James Preston, the damage a global pandemic has wreaked or the craven shower we are governed by, I feel you. It’s hard to keep it in. You’re not the only one. Be gentle with yourself.

If you like what I do you can support me here or on Patreon.

Ordinary pain…

~ somethinginthewayshemoves

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 gave 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.

If you enjoy my writing you can support me here or on Patreon

Another little bit gets lost…

~ somethinginthewayshemoves

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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Watching through my fingers…

~ somethinginthewayshemoves

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.

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