invisible illness

Forgetting your illness

December 10, 2019 — Leave a comment

Things are good, you’ve had low impacting symptoms for a while and you’re starting to remember your pre-diagnosis life. Surviving quite happily on a steady dose of painkillers and enjoying the festive fun.

Not so fast pal!

Cue a poorly child you’re responsible for nursing back to good health, a weather change, or maybe an allergic reaction to some costume jewellery. Could it maybe you’ve done a little more walking than you usually do, or a long drive? – and bang!

Hey chronic illness, long time no see.

Now there’s no need to pretend like all the above things haven’t been thoroughly enjoyable, because if it wasn’t for those things you would have been sure to shrivel up and die of sadness, but when a flare up occurs it can be completely life limiting, and that’s why it’s called an invisible illness, because you don’t see it coming.

It’s December and Christmas cheer is everywhere. You’re getting right into the spirit of it and so you should, but then you catch that cold your daughter came home from preschool last week with, and it’s downhill from here.

I wanted to write a bit about how it feels to have a ‘just a cold‘ whilst fighting a chronic illness and what catching viruses does to our already weakened immune system.

Of course at first it starts like any other common cold and you get a sniffle or a bit of a sore throat. Then the pain from your congested sinuses trigger a migraine and the onslaught of nausea that follows makes you feel weak and shaky – for days!

Once that’s passed, the aching from the flu like symptoms, makes your already weary joints feel like they’ve been battered with a hammer, every single bone in your body feels bruised and your skin is sore to the touch. The raging temperature you’ve acquired messes with your already shot internal thermostat, and you constantly flit between grabbing extra layers and peeling sweat covered ones from your limbs. After you’ve done that a few times the fatigue completely floors you, and you have to close your eyes. Which is a bit of a problem when you’re sat at your desk or the school run needs doing.

What is just a sniffle to the average Joe can disable someone with an already weakened immune system and if you see them feeling a bit sorry for themselves try and refrain from telling them to man up. You can’t see the fight they’re fighting but underneath the snot their body feels like they’re in the ring with Ali. Don’t make an assumption that because people look well means they aren’t battling, they may well be trying harder to conceal it.

It’s so important to pace yourself when you suffer from a chronic condition but it’s also really difficult when you’re feeling well to remember to do this, and not get down about missing out on fun stuff. Suffice to say I didn’t pace myself all too well this time around and now I’m paying for it.

I’ve tried really hard to fight through the tougher days lately too, and I’ve done so with not much back lash, however the start of this flare up is swiftly reminding me that actually I need to slow down. So this is my reminder to you, be kinder to yourself and anyone you know who has an invisible illness – the winter struggle is real for us all, but it’s even harder for them.

No cure

October 10, 2019 — Leave a comment

Yesterday I had my first sick day in my new job. I’ve been there under 3 months. And until now, so far so good, been taking breaks on my days off, getting enough rest whilst still having a life, looking after myself, taking my medication. Then yesterday I woke at 3am feeling nauseous and it wouldn’t go away. It was bad I couldn’t sleep. I text my supervisor in the morning to say I wouldn’t be in and spent the rest of the day in bed with a full blown migraine. You know the ones where even your phone is too bright and your guts feel like they’re falling out of your asshole?

I’m home today too, the headache has subsided but the sickness is still there, I still feel weak and unwell and generally crap about myself.

You see the thing is, back in July I had a daith piercing and I was convinced it would cure my migraines. So to learn it hasn’t has really fucked me off. I also feel shit about being home. There’s no cure for migraine, just like there’s no cure for Fibromyalgia or PMDD and I have those too, but I feel terribly guilty about it. Because I’m not a skiver, I’m not a lazy bitch (unless I have a hangover) and I genuinely feel awful when I let people down.

When I first got diagnosed it was a relief, I had loads of text messages and social media likes, telling me how relieved I must be to know I’m not going mad. I was!

I had loads of sympathy messages too, but they have a shelf life. And when you have something that can’t be cured people get bored. They don’t understand why you’re still going on about being ill all the time. Everyone knows, you don’t need to keep banging on about it.

But I do need to. I need to because that’s the only way aside from the world all contracting the same illness, that people understand. It’s the only way to spread awareness and helpful tips. It’s the way I feel most comfortable explaining it and so that is why I ‘make such a big deal out of it‘ it’s not for the sympathy as let’s be honest that shit dried up years ago. It’s not because I’m craving those text messages that don’t often come anymore, it’s because they are diseases that nobody ‘gets’ nobody really believes.

“You said you have a migraine but really it’s just a headache, here, take some asprin”

“So and so has fibro and she doesn’t go on about it all the time, she still works, she doesn’t even take medication”

“Yeah I believe she has it, but she definitely plays on it”

“It’s just a period every woman has them, stop moaning”

If you suffered migraine you would know an asprin is about as useful as a cock flavoured lollipop, once an attack has started. If you had fibromyalgia you would know it differs in intensity depending on a whole world of factors, even down to the weather! And if you had PMDD you would know that before your period comes there’s a good chance you may have considered the fact you’ve lost your fucking mind and begged your doctor to section you only to feel ‘normal’ again when aunty Flo pops in. If your mum had it and couldn’t work, or your sister, or your best friend would you say that about them too?

Anyway – the point of this post was more for me than you, the reader. It was more about assuaging my own guilt, because guilt is an emotion that the chronically ill can’t escape. I feel guilty that Shaun had to cook his own dinner after he’d been at work all day yesterday. I feel guilty that Ciara had yet another sleep over at nanny’s because I knew I wouldn’t be able to get up and see her off to school this morning because the medication I took last night meant it probably wouldn’t of been safe for me to drive, that’s if I even heard my alarm. I feel guilty for looking at my phone when I should be resting. I feel guilty for having a life on all of the other days because if I didn’t I might not feel this shit today. Guilty Schmuilty. It’s shit. It doesn’t matter how many well wishes people send, how many ‘you can’t help being sick’s’ I hear, I still feel guilty. I know I will always feel guilty until I get to a stage where maybe one day there is a cure, or maybe there’s something I haven’t tried that will help me manage better. I feel guilty for letting my family down on days when I’m bed bound. I feel guilty for letting my lovely new colleagues down on days I can’t work. I feel guilty for saying when I feel ill. I feel guilty for cancelling a night out or a meet up. But most of all I feel guilty when I make assumptions about other people’s lives. So if I’ve learned anything from having a number of long term illnesses, it’s never to assume. You really don’t have the number of someone until you walk a mile in their shoes. The likelihood is there’s people out there with worse problems than you and me. Kindness should always be your go to option.

Do you know Carol?

August 22, 2019 — Leave a comment

If anyone’s ever referred to you as a nutter, a drama queen or an attention seeker because you opened up about your mental health, then you may have some things in common with Carol. There’s a fine line between getting a pat on the back for opening up and being called an attention seeker for airing your dirty laundry online, in public, to too many people.

Example – Carol writes a status about how she’s been battling depression for years and she wants help.

Queue 100 comments of support ‘always here for you babe’ and other such pleasantries that flurry in.

One month later after getting approximately 2 people reach out ‘in real life’ since her last status. Carol writes another one about how down she’s feeling, and how her life is becoming unmanageable.

This post only acquires 3 comments, all from acquaintances, 2 of concern, one attempting banter, by telling her to stop moaning! None of her close friends comment support.

That could well be because they have messaged her privately, and that’s the most hopeful outcome. But it could also be because they’re bored. Bored of hearing again, about how depressed she is. They aren’t sure she’s genuine, their opinion is she’s putting too much on her facebook. It’s past her depression expiry date. She’s been like this for ages now.

Your time’s up on the depression clock Carol, get better or keep quiet.

3 months later and Carol is dead by suicide. Thousands of tributes pour in, with memories of times long passed, lovely well wishes to her family and such.

Is it not the typically British view when it comes to talking about our mental health, to reach out and then be shunned for reaching out. Keep it to yourself Carol, the world doesn’t need to know. DESPITE the fact we’re still banging on about how ok it is to not be ok. It isn’t though is it?

To publicly share that you aren’t ok, is deemed unnecessary, attention seeking, desperate, and yet to publicly share pics of almost anything else, including, your dinner, dead birds, neck nominations, and those kind of ridiculous trends, to rant about anything else on your status is ok (I’m using these as a vague comparison)

The point I’m trying to make is, people aren’t always ok. Sure there is always somebody worse off but how much worse than Carol can you get? Just because one person hurts differently shouldn’t devalue the feelings of others. Just because we don’t deem Carol’s depression relevant, doesn’t mean it isn’t. None of us have the monopoly on who feels worse.

A lot of us have grown up during a time where talking about your feelings was deemed over the top, or melodramatic and yet here we are now countering it, telling our kids to open up, then vilifying someone else’s for doing just that. Eye rolling with the inconvenience of having to read someone else ‘drama’ on social media. Cheer up Carol for fucks sake!

But Carol didn’t cheer up.

I’ve been both the oversharer (no shit) and the person who moans profusely about people sharing their life stories (the hypocrisy isn’t lost on me)

In recent years I’ve tried to give myself a reprimand when it comes to being judgemental, however of course I still judge people. I just do it a lot more silently and with more compassion. We’re only human, nobody expects us not to have an opinion, but it’s important for me to try and reflect on how damaging our opinions can be when outwardly shared.

I came off Facebook for a long time, leaving only my blog open, because I battled internally about what was too much to share on my personal page when I felt at my weakest. I also took the lack of comments from people close to me as personal slights. Nobody cares about me. I’ve talked before about my insecurities so that won’t come as a shock.

Most of the time when we feel like opening up, or at least in my experience with it, we may just need to sound off and maybe it’s a cry for help, but predominantly it’s more about finding someone who gets ‘it’ rather than it being about seeking the attention of strangers in a bid to win the ‘who’s more depressed competition’

If you struggle to open up, when you finally do find the courage, hearing comments like ‘oh bore off’ ‘she/he’s such an attention seeker’ ‘drama queen’ and so on can be really damaging.

Of course we could all work harder to remain positive, to accept that life could be much worse and to moan less about trivial things, but we would also do well to listen more. To care more. To find a bit more compassion, and remember that mental illness whatever it stems from, whether it be trauma, a chemical imbalance, addiction, as a reaction to a personal circumstances, injury, WHATEVER it is still just that, an illness. Desperate people do desperate things, waiting until someone’s dead by suicide to give them the shout out you feel is obligatory on Facebook, is categorically too late. If they’re reaching out now, assume it’s genuine.

I’m also in no way implying we’re complicit in someone’s depression or suicide by not responding to their statuses or stories on social media. I simply mean – if you’ve got nothing nice to say, say nothing. And if you care about someone, let them know.

That was a rather long winded attempt at explaining the above 2 lines, but I hope it sinks in. Stop telling Carols everywhere to open up, then shaming them when they do.

And finally, if you are worrying about what you should be saying or doing. Don’t! People will judge you whatever your choices and actions, even the good ones, so just be yourself and keep talking about how you feel, because it’s your truth, and I’m almost certain, there’s someone out there who needs to hear it. ❤️

5 things not to say to someone with mental health problems.

May 15, 2019 — Leave a comment

1) But why are you depressed? What have you got to be depressed about.

Maybe nothing. Why have you got a cold when it’s warm outside? Getting the message? Things that seem trivial to some are huge for others and maybe there’s not a specific reason. Remember it’s a chemical imbalance, an illness like any other.

2) It could be worse, you need to think yourself lucky.

And you Karen, need to shut the fuck up. We know it could be worse. It could always be worse. But honestly, that’s irrelevant and unhelpful.

3) You just need to ______ (insert unsolicited advice here) go to the gym, eat better, go out more, lighten up. Etc etc.

Again, unhelpful and bordering on offensive. A) We may have already tried what you mention or B) We may not feel able or ready to tackle these ‘small’ things yet.

4) Chin up, cheer up, smile…

Suck a dick, eat shit…. see where I’m going with this?

5) At least you haven’t got____ or you’re lucky to have_____

Don’t state the obvious. This is the reason many people feel unable to speak out, in fear of being ridiculed or not taken seriously.

These things may seem obvious, they may seem a bit pedantic but to be frank, they could save someone’s life. In my experience someone who is really suffering mentally needs the opposite of what these words convey. They need a listening ear and empathy, not an I told you, you should… or a chin up! The age old saying sticks and stones may break my bones but words will never hurt me, doesn’t apply to people with depression. All it takes is a little bit of rephrasing on your part. Nobody expects you to walk on egg shells but try to put yourself in that persons shoes and ask yourself if you would find the above 5 things helpful to hear in your time of need. If the answer’s no, stop saying them!

Anxiety Behind The Screen!

May 11, 2019 — Leave a comment

My experience with anxiety is, or at least has, been a parody of Prozac Nation. Have you ever watched it? It’s a film with Christina Ricci, I recommend it to anyone who feels like they’re going insane. I’ve learned over the years to control it better. I function these days for the most part, and it’s rarely all consuming as it was during my first panic attack.

I remember that day like it was yesterday, I was 14 years old, and maybe unsurprisingly, it came on after I’d been hacking a bong full of hash. But it wasn’t the stoned feeling that was scaring me and making me panic. It was every wrong thing I’d ever done in my life come back to haunt me in those moments. It was all the things that I couldn’t undo, couldn’t unsay. Teenagers do a lot of questionable things during adolescence and I was no exception. Those things now enveloped me and choked me as though I was dying. I was so swamped by thoughts of my failings I couldn’t breathe. I was physically trembling and my heart was beating so fast it’s a wonder it didn’t pop out of my chest.

For about two years following that first panic attack I was quite severely mentally ill. I had nightmares, I had obtrusive thoughts and my poor mum couldn’t leave the house without me phoning her every twenty minutes. Every time she did go out, I had convinced myself she was going to die and the fear of that was beyond what my young mind was able to rationalise. I was out of my depth, popping antidepressants like sweets and using everything in my power to numb the constant noise inside my head. I often wondered then if I was some kind of monster. If I had a kink in my armour that made me mental. If I deserved to feel so helpless and desperate every moment I was awake. I lost friends, my relationships with my family suffered and I feared everything.

Now I’m in my thirties plodding along with a bit more self control and the strength to be open (at least on paper) about how I’m feeling. That doesn’t mean I feel any less though. For example I have a hormone imbalance and when I’m feeling a dip, like now, I get a bit introvert. I actively avoid people and places. I don’t have any patience for small talk and I get irritated easily. Sounds like a bit of PMT eh? But it’s not just a bit of PMT it’s my life. The school run for instance is a nightmare for me this week. I’m really struggling with it. I don’t have a good network of school mum friends as yet and I feel like I have to keep part of myself, this part, hidden. For fear of judgement. So I avoid talking to people. I know you may think that’s silly but whether you believe it or not, there is still a stigma around mental health, especially mum’s with mental health problems. I’m trying hard not to take medication at the moment for other reasons, but yesterday morning, given my hormonally anxious state, I took a Valium to enable me to get through a meeting. I was sat in Pret A Manger drinking decaf coffee with sweaty palms and a knee twitch that I couldn’t stop. It worked (The Valium) and I did some self care by way of talking myself round. I don’t sit there chanting to myself or anything, I just try and focus on something else and remind myself there’s no reason to panic.

Some days it isn’t as easy as that to shake off those feelings of impending doom, even with the aid of a tranquilliser. The mind is a scary place, followed by you’re body’s reactive physical symptoms, you really do feel like you’re dying sometimes. I’ve had days where I’ve felt so out of control I’ve wanted to run away. Before I became a mum it was easier to hide. We all know the mental health service is practically non existent, extremely under funded and under resourced. You only have to try and get an appointment with a counsellor to realise how unlikely it is you’ll ever receive said appointment. All the more reason for us to be more mindful of each other, to look after ourselves. To learn new techniques to manage our symptoms. Of course intervention will in some cases, always be necessary, but there’s a lot we can do to help each other and ourselves too.

    Listen – Ask someone how they are and actually listen to the answer. Check in with your friend who’s gone a bit introvert. He/she might not reply straight away but they’ll know you care, and in times of anxiety that can be a real comfort.
    Practise Self Care – It sounds so cheesy doesn’t it? Self care! Breathing exercises and all that bollocks, but for some people these are a ritual that does the job and kicks a panic attack where it hurts before it’s taken hold. Cut yourself some slack too, rest when you’re stressed and do some feel good things, even when you don’t feel like doing them!
    Ask for help – I know I’ve given the psych services a bit of a bashing, but you don’t necessarily need a qualified professional to help you through a period of high anxiety. You might just need a friend. Tell someone. I am guilty of not doing this because it’s something I feel stupid for feeling, so although I’m able to write about it now, actually talking aloud is still a struggle.
    Don’t play it down– In doing so you’re lying to yourself too. You deserve to feel safe and if you don’t it’s ok to say you don’t.
    Think rationally– I know you must be reading this last one thinking, if it was that fucking easy I wouldn’t be panicking. But I don’t mean during an attack (well, then too if you can) but I mean the rest of the time. Tell yourself over and over again when you’re not in the midst of an attack why you don’t need to worry and why you’re not going to have another one. Psychosomatic!

I’m not an expert and everyone’s symptoms of anxiety will be different. I’ve said before and I’ll keep saying it, mental health doesn’t discriminate. There are hundred of different types of mental illness but they will all meet over lapping symptoms. We are each at risk of having some period of depression or high anxiety during our time on this earth, so we need to work together to educate people and ourselves. We need to mean it when we go around saying it’s ok to not be ok.

When you see this pic of me, perfect make up, fresh hair….. What do you see?

Do you see a happy girl?

A girl with her shit together?

Confidence?

If you answered yes to any of the above you’d be wrong. I got up this morning and it took me an age to feel like I looked ‘ok’ I’m not feeling my best at the moment.

I have no job so deffo don’t fall into the ‘shit together’ category, and my confidence is under par. My anxiety is bad, I’ve had about 4 hours of broken sleep and I’m tired. So fucking tired.

Moral of this post: Don’t assume. All is never as it seems. Looks are deceptive. You never really know what’s going on behind the screens.

Living my best life with fibromyalgia.

March 10, 2019 — Leave a comment

Cough, I know you’re thinking Jesus, Steph has finally decided to get out of her funk and help herself.

Not really, I don’t know, maybe I’ve just been lucky. Since I left my job my health has improved tenfold. I believe this to be because I have more time to rest when I need to, but it could be due to a lot of factors, or it could just be good old coincidence.

Mentally, I am stronger than I have been for some time. I’m off of antidepressants for the first time in years, and I’m not feeling constant impending doom. This is a really big deal for me, and I’m feeling positive about the next chapter.

But it’s not all cupcakes and rainbows (yes that was a Trolls quote) Pain has got a lot to do with mood, low mood can exacerbate pain. Especially when suffering with a condition that effects your central nervous system, as that’s when it’s on high alert. Psychological pain can bring on physiological symptoms. I’m not a doctor, but I have spent a lot of time researching my condition. I’m not going to sit here and spout that positivity cures illnesses as that’s untrue and offensive, but when you feel happy it makes pain more manageable. That much I do know.

Today I woke up earlier than usual due to Ciara’s new found love for 6am. I felt terrible, my body was heavy and I can feel pain deep inside each joint. This is not imaginary, this is real pain, and I’ve had to take some heavy duty painkillers to combat it today. Despite being in very real pain today, I feel good. Good, because I’ve had a decent run of late, without this kind of debilitating pain. I’ve had pain, but the kind of pain I’m in today, is what reminds me I have a disability. In short, it sucks.

However moving on to the positive bits again. I’ve been doing little things that make me feel better. Small things like, having a tidy living space, getting enough sleep (when I can and Shaun’s snoring allows) but generally doing things that make me feel good. Avoiding toxic people, not analysing every little thing, not comparing myself to everyone, and trying to accept my pain without beating myself up. All these little things help. They aren’t a cure but they do make a difference. I went through such a battle with myself to accept this illness without it breaking me. To allow myself time since my formal diagnosis to grieve for the old me. I’ve spent two years grieving, and I still suffer! I won’t play it down, but I’m in a place now where I can accept it without it breaking me. I can move forward and still live a good life. I can have bad days but they aren’t all bad. Some of them are fucking brilliant!! You too can have good days again. It’s not going to be easy, but even without an illness or disability life isn’t easy.

But I have all my faith in you. You can do this, you can live your best life too. 💕