invisible disability

I think I’m failing but my kid still thinks I’m a superhero 🦸🏽‍♀️

March 4, 2021 — Leave a comment

It’s no secret that during pregnancy your hormones are all over the shop, one minute you’re chomping on cheese on toast and the next your crying into your cottage pie that your friend drove 25 miles to deliver. It’s a funny old game this growing a human malarkey.

Because my health has been on a steady decline since my daughter was born, this pregnancy though a lot like hers, has been overshadowed with worry and feeling unwell constantly. When I say constantly I mean it. It’s either not being able to walk, migraines, sickness, feeling faint, high blood pressure and the rest, it’s been bad, and not fun. Also those people who said you never get two the same, you were wrong.

That said the guilt of ‘wasting’ days in bed in an attempt to make the next one better and unable to do all of the things I want with my family has had a negative impact on my emotions. Team this with hormones and you have me, an unstable, anxious, dribbling mess.

This week said emotions have been on overdrive and I’ve spent countless hours in tears, I’m surprised there were any left after the first ten or so. My husband has looked at me with puppy dog eyes and a need to fix my broken spirit and my daughter has looked at me with longing and frustration. I haven’t been able to meet their demands, particularly those of the little person. She doesn’t get why mummy is always in bed and at one point I was worried she was going off the idea of having a brother because he’s been making her mum so poorly. It all hit a crescendo on Tuesday when Ciara wanted 5 things at once and I couldn’t even give her the simplest one, which was turn the volume up on the TV. I couldn’t do it because the bastard NowTV remote is a dodgy little fucker and it just would not work. Off she stomped whilst moaning at the dog and calling for her dad to come and fix the problem that mummy was incapable of rectifying.

Once I heard her footsteps on the stairs I burst into a fit of hysterics, threw the remote which bounced off the bed and smashed a photo on the bedroom wall. It wasn’t my finest moment because I couldn’t even roll myself off to pick up the glass before Shaun bursts in asking me WTF I was doing!?

Picture it, 5 month pregnant woman whose legs don’t work, rolling around on the bed with no bra on and crying inconsolably. It’s not a pretty image is it?

I don’t want to do this anymore I wailed, like an actual whale. To his credit, Shaun turns the tv off and shouts down to Ciara that they’re going to watch tele downstairs instead. I didn’t see them again that evening because I cried myself to sleep and woke up at 10pm and waddled into her room to give her a kiss goodnight, something I abhor to miss.

The next day I’m feeling full of shame and still in pain wondering how I’m going to get through the days for the next 4 months. But I needn’t of worried about the rest of the family because like clockwork they traipse in from school and work with smiles and cuddles for me and chat shit about their days as if the previous ones have been erased.

Ciara was pleased that I had finished colouring in her tiger costume with a sharpie for world book day and asked if she could come and snuggle in my bed.

This morning I got up at 7 after being awake from 2am with possibly the worst nerve pain ever. I say this because I can’t treat flare ups in the same way I would when I’m not pregnant ie with heavy drugs. The pain relief I’m taking at the moment just isn’t working to the same effect. Anyway up I get and by ‘up’ I mean sit up in my bed and paint my beautiful daughter’s face and send her off to school with a smile.

It doesn’t matter that I collapsed back in bed after and slept until lunchtime, because she was happy. When she got home she found me asleep in the bath because it’s the only place I don’t feel like my body is on fire and she poked me to tell me about her day. Including poo gate by another kid in class which we all found highly amusing.

I do feel like I’m failing life on the reg at the moment and somedays I can’t get on top of those crazy emotions and pretend I’m bossing it, because I’m not. But what I do know, with absolute clarity is that when it comes to my kids my best is good enough, and the need to be moving all the time and trying harder is born out of my own insecurities, not those of my five year old. She loves me on all of the days, even the really shitty ones. She loves me for all of the things I can do, not all of the things I can’t.

Week 22 of pregnancy, carrying you, baby #2

March 1, 2021 — Leave a comment

We didn’t know what you’d be. We weren’t sure you’d show up on a scan as healthy. Our twenty week scan was nearly two weeks late and it made us impatient and anxious. We still don’t know what the outcome will be or if you’re truly ok in there. All we know is that you’re wanted.

Now I can no longer walk again it’s difficult to associate pregnancy with positivity. It was the same with your sister, causing me pain so difficult to overcome that I never really know what each day will bring. We’ve been left to our own devices by the health care system. Lots of people told me it happens with second babies. You’re an assumed pro by number two, you don’t need any support. Except I do need support. I do need reassurance. I am not a pro.

You present me, your mum with symptoms similar to the ones your sister did, but it’s different this time. They keep telling us about the risks to you, but don’t really do anything to help us overcome them. Maybe there’s little they can do, or maybe they expect me to know, I don’t. Medication that I need to function, to care for your sibling too, means you might need help when you’re born.

They have offered me mental health support that has been good, but physically I’m in worse shape than ever and I still have to care for your sister, so it’s hard.

We weren’t amongst the chaos of a pandemic when she was on her way. This time our support has lacked and your sister has been home for most of it. Waiting for your arrival with baited breath. With hope, but also with boredom. She longs for a playmate but she doesn’t fully understand the implications of pregnancy and why her mummy has become less fun.

Me, your mum, I have a few health issues already. Ones that were present before you were even a thought in my mind, a seed in my belly. Ones that haven’t gone away, that never really will, but that we’re working hard to escape. We love you already. That much we know, but each and every day that we will you to grow, we are scared that you’ll have a hard start. That your life won’t begin with all of the joys of a hot July summer. We worry that I might not be strong enough to care for you. That the help we need might not be available or accessible. Maybe we should have been more prepared but you showed up with two lines three weeks after my last period and we weren’t prepared, all we knew is that we would keep you.

I’m off work at the moment. Pregnancy isn’t kind to my health or my mind. I was struggling to hold down a job before you came along, but I’m trying. I fall into a category of disabled that isn’t well recognised or even always believed. I don’t get financial help for my disability and your Daddy works very hard but we aren’t wealthy enough that I don’t have to work. We are looking at ways to accommodate my return, and we have to hope that I will be well after your birth. Well enough to care for you. The trouble is I get periods of wellness that don’t really last. They are usually days and not weeks or months. I hope you don’t grow up having to care for me. I hope that I will always be able to give you what you need.

I love you. I love your heartbeat and your tiny feet. I love your kicks and I hope that when you arrive you will know that whatever challenges we face, my love for you will continue to grow.

I hope that you and your sister will always know that Mummy tried. She will never stop trying to give you a good life and will always be there to share it with you.

A letter to myself.

February 21, 2021 — Leave a comment

I wrote this because I had to make sense of my thoughts as mother and an expectant one, one who is trying to find the strength to be both whilst battling the demons that are chronic illness and mental health.

Reach out they said, so you did, and it didn’t immediately help, and when it didn’t help people stopped reaching in. You are not their responsibility, this is not their fight, and they have their own shit going on. In the middle of a pandemic everyone has their own shit going on, some worse than yours. People can’t take on your shit too. They don’t want to, they shouldn’t have to, so what are you supposed to do now?

You have spoken to your doctor, you’ve got yourself in touch with organisations that can help support your mental health, but your physical health is declining further, your hormones are sending you crazy and you’re in limbo. You’ve requested help, but there’s no magic pill, no imminent cure for your troubles. So what happens next? You’ve written a thousand blogs, almost as many poems, you’ve cried, screamed and forced yourself to calm.

Keeping busy helps, keeping moving, except you can’t do anything because you’re immobile. Stay positive, think happy thoughts, so you try, really hard to do both but your mind is clouded in worry. You wonder sometimes if you have the strength to be the person everyone needs you to be. To get back some of your fire. You’re losing interest in the things that have previously brought you joy, like reading, and writing, you feel blocked. Getting outside is increasingly difficult and because you’re not going anywhere you’re not getting up and ‘ready’ because your whole body is racked with pain you’re not focusing on getting outside, it feels too hard.

You know you need to nourish your body to give your growing baby what it needs but even eating is becoming boring, a chore, you don’t have the ability to stand at a countertop and cook, you can’t be bothered to decide what to have next so takeaway’s are your go to, but they’re distorting the view of what you see in the mirror. Your need for medication increases with your pain and with that comes more guilt because it’s not just about you anymore.

You tried to do ‘yoga’ and got stuck on the floor for an hour with only your four year old home. You tried to shower but you can’t stand so even cleanliness is taking a backseat. You have to depend on your husband to help you in and out of the bath and you feel your self esteem being crushed further, your sense of humour no longer able to gloss over the hard parts with a funny anecdote.

People care, you know that, but they don’t know what to say, so they stop saying anything. You feel like a shit friend because you know your life is consumed by your disability and as much as they can’t take on your burdens you can’t take on theirs either, so thats another stick you can use to beat yourself with. You’re still trying to be everything everyone needs you to be but it’s draining. You feel like your lack of positivity confirms your worst fears – that you can’t be saved.

You feel more connected to strangers you talk to online than anyone you know in real life, because strangers can’t judge you in the same way friends can. They don’t expect you to man up, or try harder because your lack of effort doesn’t impact them.

You spend most days led down trying to find a focus, trying to be better, to do better, to find some joy in anything.

Glimmers of hope come from your loved ones. They carry on loving you despite your struggles and your children carry on depending on you. You know that without them, your life doesn’t mean all that much to you, but to them it’s everything it means everything, you are their everything and so you snatch the glimmers, you pocket them, and you remember that this period in time isn’t forever.

Your life isn’t what it used to be and you grieve it, desperately, sometimes so much that it physically hurts, but you’ve grieved it before and you’re still here, you still have a life. You still have a future. It’s a new version, and not everyone will walk your new journey with you, not because they don’t care (that’s just your brain telling you that) but maybe because they don’t understand and your own acceptance of the things you can’t change takes time.

Learning to live a newer life, a more conscious life, a life that has limitations, isn’t easy. Sometimes the grief will be daily and feel renewed, but someday, in your future you will look back on this time like you’ve looked back on all the other hard times, times you thought you couldn’t live through and you will know that you survived it. You survived it because you put one swollen foot in front of the other, because you held on when you thought there was no hope for you, and you found a way.

You know with certainty, that you have grown. This is a set back, this is not a failure, your health has declined as a result of you trying to do what’s best for your baby.

So Steph, the message is clear, when you really aren’t ok and you feel like you’re alone with your troubles, don’t take it day by day, don’t wait for tomorrow to be better, take it hour by hour, do the things that you feel able, even if that is nothing, because it won’t always be nothing. Each day that you wake up is you doing something. You’re surviving, and when you find a way to survive you can find a way to thrive.

X

A lot of noise

February 3, 2021 — 2 Comments

I make a lot of noise. I do. I talk (or rather write) honestly about my struggles in the hope it helps someone. Not just someone going through the same but maybe also someone trying to better understand a loved one. A lot of the time my honesty is met with kindness and I am grateful for that. Sometimes however it can deemed attention seeking and I wanted to address this a little.

I am seeking attention, but not for praise or pity, for recognition and understanding. Even some of my close friends and family still say things to me like ‘Well what’s wrong with you?’ And if you read my blogs you would probably already be of a better understanding. It takes a lot of energy to express our truest struggles, that’s why some people find therapy so triggering and this is why some people prefer not share because they don’t want to open up for fear of what lies beyond, maybe in the reaction of their peers. However this is also why advocates write and promote health issues. It’s not to say ‘hey look at me I’m thriving despite XYZ’ because most of us aren’t thriving the majority of the time. It’s not to say ‘hey feel sorry for me’ because your pity gains us nothing. It’s to say ‘Hey I have this….. if you haven’t heard of it here is a bit more information. It might help you better support someone who also has it, or it might prove useful to gaining a diagnosis, if you think you have it.’

It’s also to say ‘You’re not weak for feeling this way or thinking these thoughts, you’re not alone, and you’re not attention seeking for sharing.’

We all know their are people worse off than us we don’t want your sympathy to encompass us or your relationships with us. We aren’t asking you to change your behaviours to better suit us. We’re just asking for your support. So if you replaced the ‘attention’ in attention seeking with support you would see that all we’re really doing is support seeking, and trying to find allyship. We’re asking for your acknowledgment of our struggles and your belief.

What we’re also doing, is offering you our support. We’re standing in solidarity with you and saying we believe you when you tell us you are hurting. We’re opening ourselves up in promise to be more understanding of your struggles too.

Everyone can make noise, feel sorry for themselves and wish life was different. Everyone. It doesn’t make you weak to say so and it doesn’t make you an enabler to provide support to someone with a health condition. It makes you an ally. If we didn’t make any noise about our circumstances we would never be telling the full truth because to omit said struggles would be like saying we don’t have them, and we do. We all do! Whether they are similar in nature or totally different, each struggle is valid.

Telling someone who opens up about their struggle that it could be worse is not helpful, because they already know it could be worse, but for them it’s bad enough to mention. Telling someone to be positive is ok, but if they felt able to be positive they probably would be being so already. People don’t choose misery. If they did they wouldn’t be hoping to feel better in the first place they’d accept it and live with it.

So many things go unsaid and I’m tired of living in fear of reproach for how I manage my physical and mental health. There is no right way to manage, there are different ways that work differently for different people. But what works for one may not work for another it’s a lot of trial and error and countless days spent looking for new ways to live better. I’m not saying we should all make noise, but I am saying, if you choose to speak up in order to advocate for yourself or others you should be able to do so without fear of recrimination.

I was chatting to an online friend whilst recording a podcast about being our authentic selves. Feeling able to be honest about how we’re feeling is often part of the reckoning when wanting to live a more honest life. It will probably lose you some people along the way but if it does they aren’t your people. You are allowed to speak up, you are allowed to be honest about your feelings and if it makes other people uncomfortable you should be able to have those conversations without apologising for being honest. You are also perfectly entitled to be private, if being open doesn’t sit well with you, you don’t have to be, but you’re allowed to change your mind.

Being truthful doesn’t equal being negative. Speaking up doesn’t equal attention seeking. Putting your feelings out into the world doesn’t give any person the right to make you feel like shit. Make noise, stay quiet, fight for your rights or don’t, but whatever you decide, do it for you. Because you know yourself best, and you don’t have to suppress yourself in order to make someone else feel comfortable.

Pregnant and chronically ill.

January 11, 2021 — 5 Comments

Some of you might know my story already. I married my husband in January 2020, we did it just the two of us and it was amazing, but since our wedding, lockdown and covid-19 have presented challenges, as it has for everyone, I’m not naïve enough to believe I’m alone with that and I know there are people everywhere that have it a lot worse than I do.

For me though, my health deteriorated again and baby making was not on the cards for us during lockdown…. or so we thought.

We had a baby in 2016, and she’s a healthy, sassy four year old, but her start in life was hard, on her and on me.

My pregnancy was not an enjoyable experience, I didn’t feel well for a single day of it. I was debilitated by hormonal migraines and nausea throughout, and by 16 weeks I was on crutches diagnosed with Symphis Pubis Dysfunction- a condition that causes your pelvic ligaments to become stretchy and relaxed, making walking painful, the same condition had me in a wheelchair by 25 weeks completely disabled. Later I had preeclampsia, I was admitted to hospital and after several attempts a doctor finally managed to break my waters, my contractions were then hormonally induced. I often refer to labour as the easy part after 9 months of what felt like torture, but honestly, none of it was easy for me.

I was taking antidepressants throughout my pregnancy to manage my mental health, and as a result my daughter was born with Neo Natal Abstinence Syndrome.

A condition where babies are born withdrawing from drugs they’re exposed to in utero. I wasn’t warned about this, I was told the medication I was taking was safe for my baby. Withdrawal was something I assumed only illicit drug using mothers experienced, I was wrong.

She was in NICU for 10 days and then she screamed for 15 hours a day for almost 10 months. I’ve since spoken to people who were on similar medicines and they’ve had different experiences so it’s important to note, I’m not trying to scaremonger here. I believe in looking after your mental health, but there is no dressing up that it was a very traumatic time for us. I think the consensus is not to force mums to stop medication that keeps them well, and of course this makes a lot of sense, I just wish I had been armed with facts sooner. I was peri and postnatally depressed, suicidal at times, and it hurt. It massively effected my pregnancy and birth experience, my early bond with my daughter, and I don’t consider it a positive time to reminisce about.

Given the story so far you’ll have probably read/heard me freak the fuck out at the thought of baby no 2. Yet here we are, we got bored in lockdown. We ran out of things to do, we also ran out of condoms. (That was a joke btw don’t @me) Shaun always wanted baby number two, and for the last year Ciara has asked for a sibling, but the truth is I never wanted to be pregnant again.

But I am, kind of by accident, almost certainly by fate.

In truth, I’m petrified. I haven’t acted happy about it, because I’m not about being pregnant, not really. I know how ungrateful that must sound, and let me be clear, I want the baby, I love being a mother, it’s my life’s biggest achievement. What I don’t love are the effects pregnancy has on my health and well-being.

I battle with guilt daily about my dislike for pregnancy, because I know I’m lucky to be able to birth children.

In an ideal world I would have weaned off all of my medication before conception this time, but I have a chronic illness, one that takes over much of my life. I am constantly met with new symptoms, making it impossible to imagine a life without medical intervention. You know when people say ‘you’re pregnant not ill‘ – Well in my case I’m both. Most of the time giving things up in pregnancy is par for the course but what about when you’re giving up drugs that have kept you well for years.

So, I’m withdrawing from several different types of medication at the moment, but I’m still not medication free and I might not ever be. It’s hard on me mentally, to know I could go through the same thing twice with NAS and having a baby in NICU.

In my dreams this pregnancy would be totally different, I’d be fitter and healthier, mentally stronger.

Unfortunately it hasn’t worked out that way. I’m not going to miraculously become well whilst living with a chronic illness, (chronic = ongoing) if anything it worsens as the years progress. I haven’t gotten better, and I feel as awful as I did in my first pregnancy if not worse, because there’s more to worry about – a lot more.

Midwives have classed my pregnancy as ‘high risk’ for preeclampsia and SPD again (I’m already struggling with this just 14 weeks in), and for diabetes, and that’s without accounting for my illnesses and the cretin that is Coronavirus robbing us all of joy.

I feel like somedays, even before pregnancy, I was barely hanging on to my ability to cope as a functional human being, do the fundamentals like washing and cooking meals, and yet I’m putting my body through this again and it already feels hard.

So what happens if I can’t look after a new baby?

What if they cry for 15 hours a day again and I have a breakdown?

What if Shaun leaves me for our skinny neighbour with muscular thighs and perky tits?

What if, what if, what if…..

It’s a redundant question, because what if I got ran over by a bus tomorrow?

I could cite an endless lists of what ifs, but to get hung up on them means I also need to think of the flip side, that being, what if things work out ok?

A pandemic is a big deal to the most hardened of us. So being pregnant with several illnesses and a penchant for going fucking mental at the first sign of a hormone shift feels ominous, but we’re doing it.

Baby 2.0 is coming!!

Aside from being terrified, feeling even more like shit than usual and eating everything in site, I’m optimistic, because despite ALL of that, this time I really do know it’s all worth it in the end.

I’m being seen by the maternal mental health team this time, an option I wasn’t (but definitely should have been) offered in my first pregnancy. And I have a plan for my physical health issues and medicines, it’s not a great plan, but it’s a plan that involves a lot of listening to my body.

On top of that, I have a family who have my back. We’re a team and we’ll get through it because we have each other and because we are lucky, and this, however hard it feels, is a blessing.

I wanted to write this, because there still feels much stigma around not loving every second of pregnancy and motherhood.

There is never a time when I feel unlucky in motherhood. But sometimes I feel unlucky in health, and pregnancy is hard on my health, it’s hard in general, as is parenting, at times, for all of us. And it’s ok to say that out loud.

Our journeys are different and we are forever a divided world on how to parent, because there’s no rule book and we all have our own unique way.

I wish I could flip a switch and love every tender second of motherhood, but my truth is, I don’t love pregnancy and my experience of newborns brings with it traumatic memories.

That doesn’t mean I don’t love being a mother, it just means it’s not straightforward. I didn’t want to announce my pregnancy without having explained how I feel because I’m sure there are other expectant mothers who feel similar to me that don’t have the confidence to say so aloud.

There’s so much pressure to say over and over again how much you love your kids, how blessed you are, and if god forbid you forget to mention that, obviously you don’t deserve to have them.

What I actually think is, all you can do in these times is YOUR best. There will always be people that are struggling for different reasons in every aspect of life.

When it comes to your baby though, I really feel, like your best is good enough and what works for you, what keeps you well and healthy is as important as protecting that newborn head.

We will delight in the birth of our second child as we did our first and we will get through the tough times because this time, we know they really don’t last forever and the long nights whiz by with painfully short years.

Motherhood is hands down the hardest, most rewarding job and my only goal is to be good at it (and to get to the end of this pregnancy with both of us in one piece)

NB: If you’re struggling with maternal mental health please visit Maternal Mental Health Alliance for support.

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust

Migraine – not just a headache

December 28, 2020 — Leave a comment

I have started writing this so many times. It’s a so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this blog. I really wanted you to be able to feel what I’m trying to say, so here goes.

It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye that trails up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t.

You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the parts that are pained. A few hours pass and you wake up, rush to the loo to be sick, or sit up and be so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD & Cokes accept even a hangover from 10 JD and cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick, cancel any plans you made by forcing yourself to pick up your phone even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re sea sick and the thought of leaving the house is too much effort.

Your doctor advised preventative migraine treatment, so you take 4 pills every night of your life in hope that it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so unpredictable, and so much more, than just a headache.

You can also read this blog here on The Mighty Site

Three things

July 23, 2020 — Leave a comment

I was having a little rest from socials wasn’t I? But the truth is I often feel so much relief when I express how I feel here, insta or on my blog, that it’s become a compulsion to just get it out of my head. This is me. Straight up. No bullshit. Being my true self.
I know I will never win any prizes for flying under the radar, but what of it?
My latest battle is a cycle of Mum guilt ergo
Wifey guilt. Guilt about work. Guilt about shit I did 15 plus years ago and since. Guilt about guilt. Guilt on guilt.
Currently I have this desperate need for a break from our diva child. It’s like a certified panic button that only she can force me to press, followed by an overwhelming sense of ‘This is her last summer before school take in every second. Finish that scrapbook. Build a fucking tree house and what not.’
I feel like I’m depriving her of valuable time and offering up instead stale days in front of a screen wearing 2 day old pjs.
We fucked off last week, down the coast for a bit of R&R. Our honeymoon holiday in the costa brava with a hot tub clad chalet got cancelled, and we’re still waiting for that refund so we settled for a caravan substitute. Nice caravan too, but of course I ruined it with an obligatory 2 day migraine. Throwing up battered cod into a 2×2 toilet with zero soundproofing and spending the following day with the curtains closed and crying about my uselessness.
It’s so traditional for me to ruin holidays with my health now, that we don’t even consider planning excursions without a day in between for little ole’ me to catch up.
Such is the Spoonie life. Ciara didn’t care less of course. She had Daddy to herself for a day and as always he dutifully complied with her ever growing demands.
So lucky am I to have him as my husband aren’t I? Queue more guilt about how the poor fucker just signed his life away to a woman only capable of frolics approximately 2 days a month – the rest of the month is spent recovering from that thing we take for granted called life.
Anyway whilst I’ve been torturing myself, and it has very felt much like torture in this chubby little head of mine, I got to thinking. So there’s a list as long as Peter Crouch’s leg that consists of why I’m the worst wife and at best, average parent, but I reckon there’s a few things I’m good at. Surely?
I’ve been using this app for a while called Three Things. (Not an ad! It’s a free app too) Every evening you are prompted to write 3 positive things that happened during the day. Somedays though, I just can’t do it. And somedays I’m so trapped in a negative spin cycle that I just don’t want to. So instead I’m doing something a bit different starting today. I’m going to write 3 things I like about myself, every day. It’s a challenge, but I have to get back on the positivity train soon, before I go off the track to no return.
3 good things might not occur on a day spent in bed with a migraine or crying into my pillow cause I can’t find the T-shirt I wanted to wear and I’m due on BUT…..What if I just decide that I have good hair, which I do (if a little grey under the ‘natural colour’ that I now dye it) or that my toes look cute on my tiny feet. Or that I did a good deed and I like myself more because of it? ✔️✔️ ✔️ 3 things. Everyday. I’m no therapist but even I know the key to my happiness isn’t hanging on someone else’s keyring. Whitney said it didn’t she?…. “learning to love yourself…” sing the rest. 🎵
So I’m starting today. I haven’t thought of the 3 things yet, so I can’t share them, but if you think of 3 things you want to share over here, please do. And even if you can’t, start with 1. Start today. And just keep going. Practice makes perfect. Pick something about yourself that’s a quality you’d want in a friend, or don’t. Maybe this is a bit ‘cheese on toast’ but I’m feeling positive about feeling positive, even if it’s just for today because one day at a time, right? Three things. ✅✅✅💗

Just another chronic illness blog

December 21, 2019 — 2 Comments

When I got diagnosed with a chronic illness I didn’t get the same quota that you get when you’re told you have pneumonia or you break your leg. I didn’t get ‘get well soon’ cards or flowers – which I guess is a good thing as get well soon doesn’t really exist in the chronically ill community. But we still appreciate the sentiments.

I don’t get much love for my illness, I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an excuse and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to be positive and exercise more but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed, yesterday you could of ran for the bus, but today you can’t move. Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family get fed up when it encroaches on plans with them yet again. When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction. Nobody ever says, it must be so hard, I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people whom I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when it‘s ongoing nobody wants to get dragged down with it. I get it! I really do, I’m a realist, I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick, imagine how lonely that gets.

Everyone has their own battles and some people have it much worse than you or I, that’s a fact. Some people have the same illness on a different level and some people have diseases that are killing them.

What living with a chronic illness has taught me is not to make assumptions on people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people, in different ways, sometimes it’s empowering and when you’re on top of it you feel like you’re winning, other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel everyday. It’s overwhelming and hard to explain – but by sharing my experiences with it I’m remaining sane. I’m not hiding and so that is the reason behind yet another chronic illness post. If you know, you know. 💜

View this post published on The Mighty here.

https://themighty.com/2020/01/when-people-cant-see-your-chronic-illness/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

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.