It’s later than you think…

I think it’s universally acknowledged that getting older is a wee bit scary. As one approaches those big milestone ages it is hard not to ponder the big questions. 39 is frightening mainly because of its proximity to 40 & all that entails.

I remember being worried in the run up to the big 30 too. Mainly because I felt like I wasn’t where I had imagined I would be at that stage of my life. That little measure of fear probably helped in the long run. It helped me make some needed changes. My thirties have been far happier than the preceding years. I believe what made that possible was time. I had time to think and plan and manoeuvre.

Ultimately, though, I’m approaching 40 still missing the crucial piece of my puzzle. However, this time I am very nearly out of time. My options are ever shrinking. That is frightening on a whole other level.

I sometimes feel like the proverbial guilty feminist when I have this conversation. Fear of ageing is often assumed to be about vanity. It’s thought silly to worry about grey hairs or crows feet. It’s assumed the desire to stay young is about adherence to sexist beauty standards. Or if it runs deeper the biological clock is referenced in demeaning tones. Ageing childless and/or single women are often perceived as desperate or pathetic. I suspect much of this is internalised, but I had to get these messages somewhere!

Balloon with sorry about my internalised misogyny

Where am I going with this? I suppose I just want to say it is ok. Things become a cliche for a reason. Ageing is scary. Whether that is because you are worried about physical changes, not achieving goals, your own mortality or a all of the above. It’s ok. Most folk struggle a little with change. It’s perfectly understandable to feel uncomfortable with the alterations you see on the mirror. It’s fine to be concerned about the irrevocable biological changes that age brings. Knowing that some opportunities have passed you by can be hard to accept. The unstoppable nature of the passage of time can be alarming.

In many ways age is just a number. Nevertheless, ageing does have concrete ramifications. It isn’t anti feminist to accept or care about them. A big part of the significance of our appearances is routed in living in a patriarchal society. It isn’t merely a shallow obsession with attractiveness; women’s ageing is not as viewed sympathetically. There are real life implications beyond aesthetics. Career prospects, financial considerations, medical and fertility issues are a big deal. Even if you just really lovely your hair and don’t want it to go grey, you’re allowed to have a wobble about that.

ly looking in mirror sign towel around body and hair

In the end the thing that makes it so worrisome is also what helps me deal with it. You can’t stop time. It is entirely out with our control. Feel whatever feel. Talk it out. Then carry right on living because it always later than you think.

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You’ve got stuck in a moment…

You know how they say you can’t smell your own perfume, so you have to careful now to wear too much? I feel a bit like that about my body. Specifically, my scars.

I’ve lived with the damage for so long that I cannot judge how severe it is. Mostly, I don’t think about my scars at all. They’re not a consideration in dressing anymore. I’m not ashamed or embarrassed of what they may signify. I usually find any rudeness engendered by my patchwork skin says more about the observer than the observed.

However, every once on a blue moon I have a moment. Often it’s my own doing. I catch sight of my reflection at an unusual angle or change under different lighting and I’m shocked. Horrified maybe. Not so much at my appearance as the fact that I did this to myself.

More rarely it’s as a result of another’s extreme reaction. A gasp or frightened look stirs much more than judgemental comments. When my battle scars scare others it stirs the old guilty feelings.

Sun shining through trees

In either case it is doubt that knocks my confidence. I find it impossible to determine if my body is hideous or merely slightly disfigured. Without a clear grasp of what I have done I feel adrift. It takes me back to my days in the self harm trenches; never knowing how serious a wound was. Unable to grasp onto any equilibrium.

Am I a dramatic fool over nothing or inflicting horror on innocent parties? And which would be worse? The uncertainty shakes me. I feel an imposter. For all my proclamations of body confidence there are times when my self inflicted seams run deep.

I’m stuck in a moment right now. I fight the urge to hide. Steal myself against thoughts of splitting those seams open. It’ll pass. In the meantime I’ll have the long sleeve weather to regain my surety.

Blurry lights through blinds

Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.

Things I can’t believe I have to say again… Part 1

It may be a little over optimistic to say that summer is in the way, but I think I can at least say that winter is over. Whilst I can’t wait to enjoy more lazy days in the sun, hot days always give me a moments pause.

The reason for my second guessing is our old friend shame. As much as strive I to love my body there are still so many people who’d rather I didn’t. My body does not fit societal standards of beauty. Scrap that, I don’t even fit societal standards of normal. The fact that I refuse to hide my fat, scarred flesh rocks the normality boat even more vigorously.

It has taken me years to be able to celebrate my form. My ability to wear whatever I please & shed layers in the heat is a hard win victory. I won’t lie I often still have to steel myself to step outside in a vest. Not because I feel ashamed of my a scars or my past or flab or peely wally complexion, but because there are tonnes of folk who really, really want me to.

Staring is a given. Staring combined with nudging a mate & directing them to also have a gawk is also fairly frequent. Less common, but still occuring more than you would think is the person who thinks they should actually comment on my body. Oh & I give them so much to work with. Strangers just love to get angry, sad, concerned and curious about my body. Sometimes I can just shrug that off. Often I will snark back & think these strangers pathetic. However, there are times when for whatever reason, I’m just not up for the judgement of unknown members of the general public. Their stares, nudges & comments ruin my day. I do momentarily feel ashamed and scared and like I should never leave the house again. And, my friends, is not ok.

So, here’s a little advice.

OTHER PEOPLE’S BODIES ARE NOT YOUR BUSINESS.

Your thoughts on other people’s appearance are not important. Strangers do not want to hear them. Your moral judgements are your problem, don’t make them anyone else’s. Likewise your hang ups.

STARING IS RUDE.

Always. There are no excuses. If you find yourself accidentally staring, stop. If you see someone you think looks weird, bad, crazy just remember plenty of people find your visuals unappetising too. Oh & don’t oggle them.

In short, don’t be that person. Don’t be the one who spoils someone’s lovely summer day. You do you & let the rest of world do them.

You’re clouding my mind…

Nothing bad happened this week. No extra stressful event. No triggering sights or scents. In fact, it was quite nice. Easy weekend with my man. Luxuriously relaxing day with my sister. Words were flowing. I had nothing more taxing than baby shopping & light housework scheduled. All should have been well, but no one told my brain.

At some point on Monday night my head switched from calm to high alert. Try as I might I can not decipher why. I was one minute thinking about what colours to paint my nails & the next desperately trying to pinpoint my panic. It happens that fast. Like a storm cloud darkening the sky, my mood stiffens. Suddenly my only thought is why do I feel like something very, very bad is about to happen? All I can do is run through every aspect of my life & weigh up how likely disaster is. It doesn’t matter that my checks come up empty. That only makes the anxiety worse. Even If I can’t locate a likely impending crisis, I still feel on the verge of one. The disparity between my thought & feeling drives me crazy.

My body betrays me. It takes its queues from my beleaguered brain. Thus every gust of wind or car in the street sends my heart racing. I can’t relax. I can’t sit still. I can’t get anything done either. My head is too busy with the millions of terrible possibilities it has to discount. I can’t concentrate properly, so every task takes twice as long as it should. Or just doesn’t get done at all because you know, the post man came & I had to hide in my bedroom. What I was hiding from, I don’t know. I can’t think of a single scenario in which someone knocking on my door could realistically lead to a catastrophe. Nevertheless, I cower.

It’s exhausting and it is maddening. Free floating anxiety. I’m basically just fighting with my own stupid head. There is nothing to fear except fear itself. I think that phrase is supposed to comforting; not for me. Illogical, inexplicable fear itself is a formidable opponent. I’ll be ok. Can someone just please tell my brain.

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.