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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Red Alert…

The discourse around Sarah Everard’s disappearance has been horribly familiar. The tired victim blaming about where she shouldn’t have walked. The same sinking feeling as the days go by. Duplicate faux shock from men when we recount what life is like for women. The self-same chorus of ‘not all men’. Year after year. Case after case. Victim after victim. It is always the same. None of this is new or surprising. It’s just horribly sad & terribly frightening.

Women aren’t under any illusions about the world we inhabit. We know that we aren’t safe. We’re scared when we walk home alone from the train station. We calculate the threat of each interaction with a man we don’t know. Fashion make shift weapons from handbag contents. The rules are ingrained; no headphones at night, carry your keys, shout fire instead of rape, call me when you’re home! We have been absorbing the message that we are in danger since childhood.

There is no poor decision making. We are simply living our lives. Avoiding all risk isn’t possible. No matter what complex precautions we take, we are exposed. If the journey from my bus stop to my house is along dark, quiet streets then I have no option but to regularly walk alone on dark quiet streets. We don’t have personal escorts, we can’t control who will sit next to us on the train, taking taxis can be cost prohibitive & most cab drivers are men anyway.

Dark,  foggy residential street

We know that ‘not all men’ are dangerous, but we don’t know which ones are. From childhood girls are bombarded with harassment. It never stops. Teachers & drs & bus drivers & our friend’s dad & policemen & strangers on the street & priests & guys in bars & colleagues & friends & lovers. Lots of women aren’t even safe in their own homes. We all have stories of close calls and false alarms. Most is can tell you about the encounters we couldn’t escape too. It is not a revelation that most guys aren’t going to murder us. Knowing that doesn’t change our real fear because often it’s the one you trust who will. The worst case scenario is a reality and we’re reminded of that every single time a man stands too close or lingers too long. We are adding up where this is headed when a creep makes a crude comment or gets aggressive when told no. Here’s the thing that not many men will admit, you know it too. You all know men that you wouldn’t want alone with your sister/daughter/girlfriend. You see those scary men shouting at us on the street and grabbing us in bars. Every time you tell a woman you care about that you’ll see her home or to her car it’s because you are fully cognisant if the threat. The more insidious of you get a kick out knowing you can frighten us without losing plausible deniability. Not all, but definitely enough.

I read a story recently about a guy who got a big cash in hand payment & had to take public transport home with the money. He was on high alert for the whole journey. Everyone looked suspicious. He second guessed his every move. When he relayed how stressful the journey was to his wife, she replied ‘ now you know how I feel everyday’. The solution to this problem isn’t changing female behaviour. Our awareness is at code red. Let’s tackle the predators not prey.

Instead of rushing to shout ‘not me’ men need to listen. They must examine their own complicity & learn what would actually help others feel safer. Challenge your gross friend. Know when your voice is helpful and when it is silencing. Let’s begin to have real conversations about getting more women into key positions. Our criminal justice systems approach to violence against women still needs an overhaul. Perhaps most importantly we all need to think about how we raise our children. The cycle must be broken. Too many women have already been lost.

Stone wall with protect your daughters scored out & educate your sons

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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.