treatment

Why am I like this?

~ somethinginthewayshemoves

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

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Over the faultline…

~ somethinginthewayshemoves

In a previous post I discussed some developments with my long covid debacle. I had to wait a while to see a specialist and have some tests done, but I am now closer to a diagnosis. I will speak on that later as I have two more tests to under go before that is finalised.

I am feeling deflated. My appointment this week didn’t hold any surprises, but there weren’t answers either. The consultant couldn’t give me any opinion on whether my current symptoms would improve or resolve. She also didn’t have any suggestions to improve symptoms that I am not already doing. Drs still have a lot of ‘don’t knows’ when it comes to long covid. That’s not anyone’s fault, but it is incredibly difficult to deal with. As I have said before, the thought of being stuck in my current condition is terrifying.

Large modern glass and steel hospital building

I am trapped within by body’s limitations. I feel useless and unreliable. In the last two weeks I have had to miss a funeral, reschedule medical appointments & cancel just hanging out at my friend’s house because I was too ill to get out of the house. I can’t keep up with housework or actual work. I am almost always saying no. When I see my niblings I can’t play the way I want to. I can’t help out my Mum friends/family the way I want to and used to. I can’t visit friends I haven’t seen since pre pandemic because the night before I am due to go I end up in hospital. Any outing I can make I constantly interrupt with my need to rest. People always have to ask if I am ok, if I can manage and so on. I hate it. I don’t want the people I love to be worried about me all the time. I make everything harder for everyone.

Women’s legs on a bench with handbag and walking stick

For me this is failing on all fronts. I’m not doing anything well. Doing everything that has been suggested to help and having no improvement is so dispiriting. Gentle exercise might help, but too much will exacerbate symptoms. I struggle to do 5 mins of gentle yoga stretches without getting so dizzy I pass out. Swimming is great, but I’ve been advised not to go alone. I’ve doubled my fluid intake. I’m resting and doing all the recommended exercises when I am sat down. I stand up slowly, clench muscles and don’t stay in the same position too long. I’ve gone for every test and treatment. I’m utilising every trick in my pain relief deck. I’ve cut back, more rest days, meditate, take deep breaths. Nothing works. My pain levels have not reduced. Dizziness & fainting will not abate. My heart continues to race and I can never get a breath. The brain fog is the worst I have ever experienced. No one has any other help to offer me.

California fault line

I don’t know how to adapt to this. It is very hard to see how I live a fulfilling life in this state. I know I have felt this way before and found a way, but my horizons keep shrinking. Hopefully it will get better or I will rise to the challenge. Right at this moment I don’t know how to do that. I am more stuck than I have ever been.

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A week(ish) in pictures…

~ somethinginthewayshemoves

It’s been a while since I did a week in pictures. Mainly because I have not been doing anything all that exciting. I have had a few family dos of late, so I’m doing a share.

First up was my youngest nibling’s first birthday party. The first year of these baba’s life has gone at lightening speed. They have been an absolute delight from day one and continue to be wee darlings. They are now very much on the move, starting to find words and full of fun. Their party was lovely. The babies enjoyed their new toys, grown ups enjoyed a cuddle and bigger kids loved running riot.

Dress – New Look
Tights – Pretty Polly
T-Shirt – Gift
Glasses – Where Light
Is there anything cuter than babies in tiny party hats?

Following on the family fun theme I had a gorgeous Easter lunch with my Mum, Sister & her boys. My sis made a superhero afternoon tea with plenty of vegan friendly options for me. The boy opened some Easter gifts and then we set off to his swing park for a bit of carry on.

After all that activity, I required a wee bit of rest. I had a quiet few days at home. Wore my comfies, tried to finish some work and painted my nails. I also had some yummy comfort food & bought Bronan some new catnip, which went down well. Strangely it also increased his paper fascination.

Nail Polish – Barry M High Vis

Thursday brought some Auntie time. My sister needed me to watch the boy for a few hours in the morning. This worked out perfectly as it gave him an opportunity to try out the blocks that Geomag* kindly sent me. I had intended to get a few of my littles to try them out, but this boy fell in love with them. He played all morning, took them home to play all afternoon too. The Magicubes are magnetic blocks that connect and hold on all six sides, meaning kids can build anything with them. I’ll definitely be buying more for the rest of my nibling gang.

Very pleased with his dog and dinosaur

I finished off the week with blood boost. A transfusion can be a nuisance, but necessary. Ultimately I am very grateful to have access to the medical care I need. Plus it gives you a good excuse to stay still and listen to a podcast all afternoon. I came home to huffy cat (annoyed that his dinner was late) & a lovely sunset. Not the wildest Friday night, but I’ll take it.

Big thanks to blood donors!

* GIFTED

Caught in a trap…

~ somethinginthewayshemoves

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Is it really ok?

~ somethinginthewayshemoves

‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.

Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.

It’s ok not to be ok in orange text with green quotation marks

What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.

And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.

When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.

Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.

While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?

The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.

If someone in your life is suffering without help you can contact your Mp & express your concern.

Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.

Stop voting for people who are actively defunding our health service.

Be proactive. Ask loved ones what specific help you can provide.

Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.

Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.

We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.

Open shouting mouth with the text your voice has power

* Information Services Scotland ** SAMH

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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Help me if you can, I’m feeling down…

~ somethinginthewayshemoves

Are you losing the plot yet? I fear I’m getting there. Lockdown is getting harder. If like me you already have less than perfect mental health, you may be closer to the edge than most.

I’m with you. I’m finding all this time alone is churning up lots of issues I would prefer remain undisturbed. The isolation is leaving far too much room for pondering big issues. Existential questions that I couldn’t answer before the world went mad & are even more confounding now. I swing between Groundhog Day dread and being on jangly high alert. Trying to break the monotony of another day home alone by sorting your underwear drawer is a tiny bit depressing. My already racing heart attempting to burst right out my chest every time my noisy neighbours thump really isn’t fun either.

Am I doing anything that matters? Am I running out of time & is this pandemic melting huge chunks of what is left? Can I continue to makes ends meet? Am I doing enough for those who can’t? Can I get a Tesco delivery slot or my prescription? Will I ever get rid of long covid? Will all my loved ones get through this unscathed and will we ever be permitted to be in the same room again? This shit is only the tip of the iceberg. Beneath the surface are all the intrusive thoughts and fears of catastrophe.

Image of iceberg above & below waterline. The sea is vivid blue.

I say this with the knowledge that I am in a privileged position. I have security & a support system that many do not. Too many people are living in situations that are perilous in every possible way. Accessing even the most basic of assistance is getting harder. Half a carrot, a handful of tuna & frubes will not feed hungry children (if you don’t understand this ref, read this & try to control your rage). When you can’t rely on the system to ensure kids don’t starve you can bet that mental health services are in distress. A fact that has been keeping me awake at night as I worry about my own mental wellbeing.

With that in mind I wanted to share some resources. If you don’t feel you can wait to reach the top of an nhs waiting list one of these may be helpful.

Theses organisations offer reduced cost therapy.

Arbours Association

Frontline Therapist

Problem Shared

The Guild of Psychotherapists

Dedicated to Change Project

The Spark

Sandyford Glasgow

Most universities & colleges offer counselling services. If you are student it’s worth checking out what help your institution can give. Many also offer low cost therapy with students training in psychology disciplines.

You can find online support here:

Samaritans

Mind

Calm

Age UK

Women’s Aid

Beat

The Mix

Childline

There are also local services across the UK, a bit of google research may lead you to affordable (or free) help in your area. I know that none of these options are perfect, I wish I had the answer. In the absence of a complete solution I hope these options might be helpful.

As always when discussing mental health it is important to state that I am not a professional. Please seek advice from your GP in the first instance and contact emergency services if required.

My week in pictures…

~ somethinginthewayshemoves ~ 2 Comments

I had a few rough weeks, but I’m slowly getting back into the whole life thing. I have done some pretty cool things & knocked out some damn fine outfits this past week. Unfortunately I’ve entirely failed to get any photos worthy of an actual outfit post, so I’m giving you a mish mash medley of my doings.

Last weekend was a bank holiday & the sun decided to show up. Of course the entire of population of Glasgow rushed outside to soak up the vitamin d & shed their clothes. I happily joined them. On Sunday the Toyboy & I headed west to check out another Overheard in the Westend. Before enjoying the spoken word & music in the cavernous Inn Deep we had a drink by the river. All in all a perfect holiday Sunday in the sun.

ly h Kerr

Pinafore & Kimono – Asos Curve

West End, Glasgow

On Tuesday we ventured out to see my all time favourite comedian Luisa Omielan. Her feminist, body positive routines are both inspiring & hilarious. Her latest show Politics for Bitches (for BBC3) goes even further. She’s taking comedy to new places by talking about our political landscape, the inequalities that created it & what we can do to grab back some power. The show in classic Luisa style is empowering, but with poignant moments as she shares her experiences of her mother’s brutal cancer journey & tragic death. She is filming in various locations, check her out if she hits your city.

ly h Kerr

Dress – Forever 21

Luisa Omielan, politics for bitches in Glasgow

I had to squeeze in a little medical treatment this week too, which left me tired & my body very tender. The rain arrived along with my fatigue meaning it was time for a cinema day. So, I ditched my underwire, slipped into a soft dress & met my fav Mummy & son pair at Cineworld. We saw The Guersney Literary and Potato Peel Pie Society. The film was good; made me blub a little, but ultimately a happy ending. However, the best moment was definitely my nephew loudly filling his nappy during the big romantic scene. I love that boy. The film is worth a watch if you like a bit of period romance with stunning scenery & excellent retro fashions.

ly h Kerr

Dress – Primark

Cineworld, silverburn

Now for the random likely section. I did a little thrifting this. Also a wee bit of bargain shopping. My bigger nephew turned 2, but is on holiday, so I prepped for his return. I obviously painted my nails, made some faces with my niece & clicked pics of generally pleasing things. I hope you likey too.

Project post it, Glasgow Nail Art by ly h Kerr

Ring – Glad Rags

Bronan Kerr

Don’t tell me what to do…

~ somethinginthewayshemoves ~ 4 Comments

In this world of self care & mindfulness it seems like everyone thinks they’re a therapist. Don’t get me wrong, sharing what works for you & talking about our mental health is great. It’s just that, to put it bluntly, some people talk crap. Others just regurgitate tired old advice that ain’t helping anyone. Man alive, I’m sick of it.

I want to talk specifically about the useless chatter surrounding self harm. I’ve been hearing & seeing the same patronising advice for YEARS. The most frustrating part is it often comes from people who really should know better. So, allow me to take you through why so much of the standard advice is just plain bad.

1/ Draw on your skin instead of cutting/burning etc.

This one usually takes two forms. The first opines that whatever relief/release a person may find in hurting themselves they can also attain by simply drawing on their skin. Now, let me ask you this, if drawing lines on yourself would make you feel better would you be causing physical trauma in the first place? The answer is of course, no. The components of self harm that serve a purpose vary, it may be pain, blood, disfiguring the skin or even a need to punish oneself. None of which needs are met by drawing.

The second part of the draw on your skin nonsense is the idea that you draw something pretty (often a butterfly) where you would normally self harm. The desire to preserve the ‘body art’ is then supposed to dissuade a person from ‘spoiling’ their skin. The stupidity of this idea is obvious. If actually scarring oneself will not prevent a person from harming themselves it seems very unlikely that spoiling a temporary drawing will. Even if by some miracle a biro butterfly were enough to assuage overwhelming distress, the body has a lot of flesh. Are people to cover every inch of themselves in rainbows & roses?

Butterfly drawn on skin

2/ Have a hot bath, cup of tea, blah, blah, blah…

Imagine the kind of agony you would have to be in to take a scalpel to yourself & cut for hours. Do you think a nice bath would magic that away? The answer is no. A bath helps you feel better at the end of tiring day. It does not release you from excruciating emotional pain.

3/ Distract yourself.

The need to self harm is powerful & persistent. For some reason lots of people (both professional & laymen) believe the urge is fleeting. I often see those struggling told to distract themselves until the urge passes. This advice betrays an ignorance regarding the workings of self harm. The need to hurt oneself does not easily wane. In fact, the longer a person self harms the stronger the compulsion becomes. Often it is impossible to focus on anything else. No sleeping or eating or thinking until the hunger to hurt is sated. It isn’t possible to distract oneself from that level of intrusion. When you cannot function on the most basic of levels watching a film or phoning friend are not options.

4/ Throw away your self harm tools.

The rationale here being that if one does not have the apparatus used to self harm, then self harm is impossible. WRONG.

As already discussed the compulsion to injure oneself is incredibly strong. Desperate people become ingenious. Trust me, when you really need to, you can hurt yourself with anything. Believe me again when I say those fraught & frenzied moments are when people make mistakes. As incomprehensible as it sounds self harm can be the very thing keeping someone alive. Asking or obligating an ill person to give up their lifeline is dangerous. It is also cruel.

5/ Ping your wrist with an elastic band/hols an ice cube in your hand etc.

My objections to this one are again two fold. To begin with it’s just ineffective. Self harm is both a habit firming & escalating problem. A person almost always experiences a need to increase the severity of their injurious behaviour. This takes us right back to the start. If the nip of an elastic band were sufficient, no one would be putting themselves in hospital via self harm.

A more serious objection, though, is the message this sends. Telling a vulnerable person that hurting themselves is ok, is a head fuck of massive proportions. Self harm is never the real problem, it is a symptom. In order to tackle self harm one must deal with the underlying issues. That is hard work, time consuming work. It’s much easier just to counsel harm minimisation. In doing so, you validate a sick person’s maladaptive thought process. That mental health professionals routinely tell patients that hurting themselves is ok is a disgrace. The basic premise of the hold an ice cube/ping an elastic band technique is that hurting yourself is a reasonable response to emotional turmoil. Just don’t do it badly enough to bother other people. By suggesting someone harm themselves in a small way you have shifted the conversation from, ‘let’s help you not hurt yourself’ to ‘hurt yourself in ways that do not draw attention to the act’. It is ignoring the root of the problem & allowing a person to believe that they are deserving of pain. It’s lazy, it counter productive & it is bullshit.

Hand holding ice

If you are struggling with self harm or you know someone who is, don’t feel helpless. When you are searching for help & find only these sort of suggestions it can feel like there are no answers. Whilst there are no quick fixes, there is hope.

See your Gp. If they don’t listen or offer help, see another Gp. I know this is exhausting at a time when you can least afford a fight, but please, don’t give up. If you have a friend or family member who can be your advocate, take them with you. You deserve treatment. You deserve care.

If you have badly injured yourself please seek medical advice. Again, if you have a friend or family member who can support you, take them along. If you do not & are worried about how you will be treated taking a copy of NHS NICE GUIDELINES can be helpful. You are entitled to be treated with the same compassion & respect as any other patient. Most emergency personnel will do this, but a few may need reminding of their duty. Being able to quote these guidelines helps in such situations. As scary as this may sound, do not put yourself at risk by avoiding treatment. You are worthy of diligent medical care.

If you are not yet ready or able to see a Dr, you can contact The Samaritans 24/7.

Call – 116 123 (uk)

Email – jo@samaritans.org

I don’t know where I stand…

~ somethinginthewayshemoves ~ 10 Comments

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

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

Foot & walking stick

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

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

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

Less fun.

Less appealing. 

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


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

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