Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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The best of me…

Dear Baby,

Today would be your 20th birthday. I’ve had the time it would have taken for you to become a man & still the wound is raw. It seems that a certain amount of pain will always be part of being an invisible Mum. I miss you and all your siblings. Even though I never got to make real memories, I hold our phantom family in my imagination.

My life will always be less for your absence, but I’d never forgo the time that I carried you. You will forever be the very best part of me.

Love always,

Mum.

I can feel something inside me say… see this show

Last night I shed my jammies & dragged my sister out on a school night. We headed west to catch Kiri Pritchard McLean at The Stand.

Sisters

I’m a big fan of Kiri’s (Rachel Fairburn’s) podcast, All Killa No Filla. I’ve also seen her in various tv shows, plus bits & pieces at the Fringe. I knew she was funny & cool, but I had never seen her perform her own show. I’m so bloody glad I bagged tickets for Victim, Complex because it’s incredible. Stand up shows that make you cry are kind of my thing and Kiri may be my new queen.

The stand, woodlands rd

Everything about Victim, Complex is perfect. Kiri’s bright yellow, sequinned adorned person dominates the stage. She welcomes the audience into dark experiences with much hilarity and stunning vulnerability. It is powerful to watch someone take control of their painful truth.

Gaslighting & mental illness probably don’t seem like natural stand up material, but it works. It’s definitely an emotional hour. The laugh out loud moments far number the tears. It’s an uproariously relatable show; packed with filth, a plot twist & the wisdom of that drunk girl we’ve all met in a club toilet. It’s all underlined by an important & empowering message.

Victim, Complex flyer

My body is properly punishing me for daring to leave the house, but it was absolutely worth it. That’s pretty much the best review a show can get. If Pritchard McLean is playing anywhere near you, buy a ticket.

And if that wasn’t enough to convince you, there’s a free badge!

Carbonated badge

The dog days are done…

It’s been a rough couple of weeks. Extra illness, extra stress & very little sleep have taken a toll. My mood has taken a nose dive. I’m battling a fairly substantial wave of anxiety & the urge to just hole up at home.

I am fighting, though. One of the things keeping me going is how far I’ve come. These lows will probably always hit, but it helps to know things are not as bad as they once were. On days like this reading my own dark words shine a tiny light through today’s depressive fog.

The blood jet is poetry, ly h Kerr

I’m hoping some sleep & resolving some of the stress inducers will alleviate this bout of blue. In the mean time I’ll be digging deep in my chest of resources to keep myself focused on the light.

Bronan Kerr

Rest assured this boy is always looking after me.

You know you want it…

I really want to write about the whole Kavanaugh debacle, but I find myself too filled with rage to be coherent. He is the perfect example of how deep misogyny runs. From the tired old ‘why did she wait so long’ & ‘boys will be boys’. To his openly disrespectful treatment of female senators and the hypocrisy surrounding how male displays of belligerence & tears are strong and riveting, whilst a women doing the same would be hysterical and unfit for the public office. It’s the patriarchal home run. The really horrifying thing is I’m not convinced any of it will stop his confirmation. We keep thinking we’ve made progress, but it’s lip service. Crumbs.

I am disgusted. And exhausted.

Someone else summed it better. I’m just going to leave this here.

For the avoidance of doubt, I Believe Her. Dr Blasey Ford is a hero.

But I ask where is the poetry…

I’ve had a rough couple weeks. Ill health (myself & others), unavoidable obligations & insomnia rearing  it’s ugly head have led to an incredibly stressed out ly. Alas, the blog has suffered. Normal service will be resumed soon. In the meantime I offer a small poetic interlude. 

I find poetry incredible cathartic. I often attempt to write away my troubles. You’d be surprised how often it helps. 

I am ready now to fall…

Dear Baby,

I still write baby even though you’d be almost grown now. You’d be pretty much a man, which is very scary. I bet you’d be amazing, though. I picture you as tall & sensitive & just a tiny bit reckless. I know we’d have butted heads, but I’d love your fire. 

 I’m feeling pretty raw this year. You have another sibling who didn’t make it to life. I have another reason to cry. I have reasons to smile too. I’m doing ok. 

I’d be better if I was buying cake & wrapping presents, but life had other plans for us. I had to learn to be strong & you were destined for somewhere more beautiful than this world. 

I’m ready now. Love, loss, life, I can take it all in my stride. I am ready to to mother a child I can hold in my arms as well as my heart. I have wonderful new little people to cherish, I have hope & I will always carry you with me. That’s enough for now.

Love always,

Mum.

Xxx

You & I…

Dear Son,

I’ve been trying to keep low key busy today; house work, catching up on emails & so on. I have hoped to keep myself from sinking too deep into sadness. 
I’ve actually done quite well. I had a cry in the shower, but the water washed those tears away. There was no evidence left for anyone else to see, which is like you. Gone. Without a trace.

So, I’ve taken a lot of deep breaths & whispered to myself that I’m ok.

I’m ok

I’m ok

I’m ok.

And I am. More so than I’ve ever been since I lost you. I think maybe I can try again. Perhaps, I can do this life thing. I wish I could believe that would heal me, but you’re not a wound. The pain is bittersweet. 

I’ve been wondering what my life would be like with a 16yr old. Louder, grumpier, more complicated? I’ll never know how our life would been. I do know I’d have given you my best. I’m also sure that you’re worth it. The short time I held you within me will always be worth all the rest. 

Now, you’ve got me crying again. My tears are inevitable, as is my love. Inevitable & invincible. No matter what happens there will forever be you & I. 

Love always,

Mum

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.