Make it easy on yourself…

2019 has barely gotten going & it’s been rough already. In a matter of weeks I have lost my baby & my boyfriend, which is less than an auspicious beginning. If I sound flippant, I’m not, I’m just trying very hard to put one foot in front of the other.

The demise of my pregnancy is devastating. My relationship’s end is sad, but the right decision and that’s about all I have to say on the topic. I find myself approaching the year (and my life) alone again. Being single hasn’t ever worried me all that much. I’m definitely not scared to be that kind of alone. Childlessness on the other hand, terrifies me. What do you when you’re facing your biggest fear? I haven’t a fucking a clue.

#projectpostit

For the time being I have taken the clichéd approach of one day at a time. I’m trying not to spend every day at home in my jammies (there is however a lot of crying on the sofa). Functioning is a struggle for a multitude of reasons. Primarily, I am exhausted. I’m always tired. Add even less sleep, the effort it takes to contain my anger at life itself, the fact that I will not stop bleeding, so despite the blood transfusion my haemoglobin level continues to flag and you get extreme fatigue. Having a different emotion every 5 seconds is tiring. Battling (& often failing) to contain the tears is wearing. Breathing & washing & conversing & not screaming is all taking gargantuan effort. The truth is I’m not managing very much. I’m practising being ok with that.

Blood transfusion, Rose wine, snuggling cat, reading baby

I recommend spending time with people who don’t expect too much of you. I’m giving priority to anything that give me comfort; my little people & potatoes pretty much have that covered. Hot baths have featured heavily as has ‘fake it ’til you make it’ make up. There was one afternoon of day drinking with a lovely friend that actually helped a lot, but not something it would be wise to make a habit of. My purring cat is a godsend. I’m reading, sleeping whenever I can and endeavouring to be gentle with myself.

ly h Kerr

I have no clue how to tackle the overwhelming sense of guilt. Chipping away at how ‘not fair’ this is may well take the rest of my life. I’m focusing on the small stuff. Giving myself a pass on the growing mountain of washing, the ideas that go unpitched and being awfully rude to the person who called about my non-existent road traffic accident. I find it harder than you’d imagine to let that stuff go. Being hard on myself comes easy. i have learned that when life gets you on the ground it’s worth tackling the instinct to kick oneself whilst already down.

Sunset

Advertisements

You’re my favourite…

I’m still a little bit in holiday mode. I’m struggling a bit with some hardcore fatigue and have given myself until Monday to get back into gear. I didn’t want to leave a gap here, so I settled on the epitome of new year posts; the round-up. My 2018 favourites, if you want to get specific.

I started the year reading what turned out to be one of my favourite books of the year. ‘The Love of a Bad Man’ by Laura Elizabeth Woollett is a collection of short stories that tells the fictionalised (based on real events) account of the women who paired up with some of history’s most notorious bad men. When I say bad, I mean completely evil. It’s dark, but so original. We rarely get an insight into the lives of women caught in the drag of historical men. These imagined tellings of their relationships and (often destroyed) lives is compelling.

The love of a bad man

My favourite beauty buy (who am I?) this year was bought early on too. It was a super cheap ebay experiment that had amazing results. I have long yearned for a dramatic winged eyeliner look. Alas I have never possessed the requisite skills. Enter my new friend, the eyeliner stamp. It took only a few attempts to perfect the perfect flick. I can now cheat my way to amazing eye flare.

Eye liner stamper ly h Kerr eyeliner flicks

By spring we were already engulfed in a heat wave. The Toyboy & I took advantage of sun & slipped off on a mini break. Kilberry Bay, Tarbert is just stunning. We enjoyed a few peaceful days surrounded by the most beautiful nothing. With a deserted beach so pretty that it’s used as a wedding venue and a gorgeous view of Islay, Kilberry was the ideal spot for a rejuvenating getaway.  I find the sound of the tide swooshing on the sand desperately romantic, thus this became my favourite trip of 2018.

Kilberry Bay

Summer brought more sun and No Shame. Lily Allen’s eagerly awaited fourth album. I’ve always loved Lily’s witty lyrics and wry honesty. No Shame ups the auntie on all of that, a lyrical description of the collapse of a marriage, juggling motherhood, work & living. All is laid bare with, you guessed, it no shame. Just lashings of reality. Each track pulsing with the guilt, hope & grit of life.

No Shame

I took until August to hit the outfit jackpot. The Edinburgh Festival was a masterclass in packing light as I knew I’d have to carry my back pack on the final day. Thus I had to think clever when it came to styling. I ticked all the boxes with this sheer/retro combo. I even managed to make my walking stick look almost cool in this picture. Which is quite a feat, believe me, navigating Edinburgh with a stick is not smooth going.

ly h Kerr Ed fringe

Last, but most definitely not lost least is my favourite day of the year. February 6th was without a doubt the most magical day of 2018. That’s the day my amazing little sister brought her adorable little man into the world. He has been a complete joy every day since. New babas to love will always be the best thing life can offer, so ’18 was a stellar year.

ly h Kerr baba nephew

I don’t know where I stand…

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

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

Foot & walking stick

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

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

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

Less fun.

Less appealing. 

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


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

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

A day in the life…

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

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

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

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

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

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

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

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

Try to comprehend that which you’ll never comprehend…

In the midst of a wonderful weekend at the Edinburgh Fringe I had two really inspiring experiences. Both of which fuelled in me a desire to share some writing that hasn’t seen the light in quite some time. On Sunday I saw Neil Holborn perform his stunning poetry. He is very open about his struggles with mental illness & includes his own experiences in much of his work. The power of his honesty & the emotional response he received to some of his pieces really struck me. He reminded me of the power of sharing the dark reality of mental illness. Later that day I was introduced to a friend of my boyfriend who also talked openly about his past mental health struggles. This led to a discussion of how helpful it is to talk about these issues; how more often than not other people will then share their own experiences of mental illness. We talked a little about how that realisation that mental illness is actually really common relieved so much shame. It reminded me how important it is to talk frankly about my experiences, so that those in the depths of illness can see that they are not alone. Equally important is to reach those who have never been touched by mental health problems. Letting people see that this can happen to anyone, that the pain is intense, debilitating & uncontrollable lifts stigma. I really believe that the way to fight ignorance is information. Not just statistics, but brutal insights into conditions often misunderstood. It is so much harder to dismiss mental illness when you have been confronted with it’s reality. 

With this in mind I decided to review work I produced in my darker days. For those unaware I have battled with PTSD, depression & self harm for most of my adult life. Although my mental health is much improved from the time of this piece, it remains a daily struggle. One is never cured. The best I can do is learn to live with what I cannot change & fight for what makes my life beautiful. I am profoundly grateful to no longer be actively self harming. I am also aware that urges still exist. It takes work to maintain my current life. I make a daily decision to keep fighting & I am far from alone. 

I know these words may be disturbing to some, but I ask you to read them anyway. I share this because I passionately believe that a deeper understanding defeats stigma & grows compassion. 

i had another little crisis

despite a transfusion in late december,

my haemoglobin had again dropped to 6.6

causing doctor’s to get jumpy

&

prompting talk of another transfusion.

this fuelled  a panic in me

i do not like having blood transfusions

i feel incredible guilt.

other people are more deserving of this blood

someone selflessly gave of themselves.

i will waste it

i know it will feel horrendous inside me

i do not want it.

i don’t really have the option of

saying

no

they will call in a psych consult

which could lead down a road

i can’t

even

think about

my first stupid reaction

is

i must cut

whilst the dr’s decide

i will blood let

i know it doesn’t make sense

to most

but

there is method in the madness

my hb is already low

i may as well be hung for sheep as a lamb

i will hate myself less for shedding my own blood

if i lose enough blood

do enough damage

i may feel sated for a while

with this in mind i set to work

after two disappointing nights

of

slicing

&

producing inadequate wounds

i got angry.

on the third day,

the gp called to say they had decided to go with an iron infusion the following week.

i considered myself free

to

paint the town RED

i felt it couldn’t be that bad

if i didn’t need a transfusion

i had still better fit in as much damage

before treatment

&

truthfully

after two pitiful nights

i needed it

so,

feeling enraged with myself

i set to work

i chose a spot on my slightly less scarred right forearm

i cut vertically

downwards

towards my wrist

everytime i reached a depth i could live with

i elongated the cut

&

started to work down into it again

i got into the most dangerous mindset

where

i just can’t resist

a little

bit

more

i ploughed through the layers of my flesh

fascinated

with what lay beneath

i watched three distinct fountains of blood

flow into one

sticky

hot

pool

i pulled the wound apart to make the blood spurt higher

i sawed through

some

tough,unknown inner material

and

thrilled

as the spray soared out

and hit my face

when i was finished

i watched

for

i don’t know how long

long enough to become dazed

i had created a gaping trench

the entire length of my foream

that continuosly filled with blood

and

spilled over, flooding the floor.

i could not stop the blood

nor, could i think straight

i wrapped a towel around my arm

put a huge jumper on top

and

took the bus.

yes,

the bus

to a&e

i trailed blood into reception

& collapsed in the triage room

i was so ashamed

dreaded trying to explain myself

lay in a cubicle

crying

i had done this many times before

but somehow

i couldn’t control my fear or self loathing.

i received 21 stitches

a transfusion

and

was hospitlised again for three days the following week with chest pains & breathing difficulty 

requiring

another

two units

&

suffering from severe pain

i spent those 3 days in & out of a morphine

induced altered reality

Junior dr’s were too scared to take blood from my arms

apparently experience is required

to find a vein in this network of scar tissue

the consultant was overly kind

fellow patients

stared & whispered

i lay there in

shame

pain

fear

all of which added up to

another attempt

to stop.

11 days

and counting……

20/03/2012

Blood on a mirror

Listen…

I want to talk to you about something that isn’t often discussed. In a world where almost nothing is taboo miscarriage remains an uncomfortable topic. I know from personal experience that friends and family are often unsure how to approach such a loss. A misplaced belief that a mother’s (&her partner’s) privacy must be maintained or worry that bringing up the subject will cause distress can leave a grieving parent feeling isolated. I’d like to open up the subject, share my experience & hopefully change your thoughts on how best to support a friend who has suffered a miscarriage.

I cannot stress enough how important it is to acknowledge a person’s loss. Miscarriage feels like a death, you have lost a life that you created & have already given your heart to. Let your loved one feel that pain out in the open. Treat this grief as you would any other. Send flowers, a sympathy card, be available to listen. Acknowledge that the child who hasn’t made it into our world is real. To feel that those around you care for not only you, but your unborn child is a crucial part of the healing process.

There is no rule book for recovering from miscarriage. Some people need to throw themselves into work or a busy social schedule. Others may require time alone to process what has happened. There is no right way, listen to what your friend tells you they want & support them. Whether that is getting raucously drunk or cuddling them whilst they cry. There are so many complicated emotions attached to losing a child. I felt a crippling guilt. I know others who have felt rage & some people who accepted the loss as part of their path or an act of god. There is no correct way to feel. As irrational as these responses may seem to you, let your friend feel what they feel. Listen, reassure, but never judge. Each person knows what is appropriate for them, respect that.

Miscarriage is a life changing event. Conceiving again does not wipe out the loss. Your unborn baby can’t be replaced. For me a permanent memorial was necessary. Many people need to commemorate their baby. Be it tattoos, planting a tree or a gathering do not shy away from involvment in these acts of love. Allow you friend to carry their child with them.

Don’t assume that miscarriage is best kept secret. In the immediate aftermath & in the years that have followed, I have wanted to talk about my experiences with miscarriage. Sadly, I haven’t always felt that I was allowed to do so. My loss was treated as something that must remain private. Whilst I am sure this attitude was well meaning, it left me unable to express emotions that I felt suffocated by. If your friend, family member, colleague or even a stranger on a bus wants to talk about their miscarriage, please let them. You cannot imagine how freeing it is to let out the tumult of thoughts in your head. 

Miscarriage is not a rare occurrence. Many women will have to find their route through its consequences. This post is based on my personal experience & the consensus of the many women I have known who have had the misfortune to share that experience. Of course there will be parents who have differing views. I can’t speak for everyone. Ultimately you must trust that each indivdual knows what they need & follow their lead. However, I do hope that some what I have written has given you pause for thought. Moreover it’s my wish that my suggestions will ease this painful journey for others.