The pros and cons of having an open social media account.

It’ll come as no surprise to anyone who follows my socials that I am for the MOST part an open book. I believe in being real and I choose to show the good and the bad online, there are many reasons I do this and again for the most part I feel like it works for me. That’s not to say it’s not without it’s drawbacks and I wanted to write a little about both the pros and the cons here in this article.

The first positive and it’ll come as no surprise if you follow me regularly is that it’s great for raising awareness about topics that are important. Social media is the fastest and generally most effective way to draw attention to these topics. Without awareness we would still very much be living in the past. Without social media, topics such as chronic illness, mental health, maternal mental health and motherhood would still be seen as taboo, still misunderstood. I believe that being open about your struggles can encourage others to find the courage to do the same.

The negative to this of course is, it’s often deemed attention seeking and whatever you post online can be misinterpreted. Most social media posts are opinion and not fact checked before going live, therefore it shouldn’t be your sole source of information even on topics that are familiar to you.

Second positive for me personally is that the connections I’ve made via social media have been invaluable in so many ways. I’ve found communities of people that have had similar experiences to me, and it’s provided some great opportunities. Before I started blogging and posting regularly on Instagram I could only dream of getting my work published in print. I’ve since been published several times, I’ve even had my scripture printed on clothing and now cohost a monthly podcast, without social media none of that would have been possible.

The downside to making connections online is they aren’t always genuine or beneficial. Collaborations opportunities should be well researched before agreeing or entering into any contractual obligations. If you choose to share your hard work and in my case that’s writing, then it’s important that you gain trust in your collaborators before doing so. The second negative about online connections is of course trolls. Even small time accounts can receive abuse and negative comments from people they’ve never met. Some people will say that you open yourself up for backlash and should accept it, but nobody, nobody has the right to treat you like shit. It can take a while to grow a thick skin though and sometimes sadly, the trolls do get to us.

Third positive is that having an open account can make you easier to find, meaning old friends you’ve lost touch with can find you. People who share your interests can find you. I say this is a pro because for me I’ve reconnected with some old friends in recent years and they’ve become constants in my life. I worked with a friend when I was just eighteen and we found each other via social media again about two years ago and now regularly keep in touch (when permissions allow) I’ve also made some amazing new friends that live locally to me and are now real life friends.

The con in this instance is the same as the pro. Having an open page can make you easier to find and that’s not always a good thing. You might have made some changes in your life that people who knew you during a previous one don’t understand. You might not want everyone you work with being able to see you post drunken stories on the weekends, these are all things to consider before opening up your account for public viewing.

Finally, my fourth pro is the ease in which you can set up events and reach many people at the same time. There’s no other way to do this, particularly if you don’t carry around an old address book or have everyone’s numbers stored in your phone. Tools such as Instagram and Facebook are great ways to send invitations to events and create group chats with extended friends and family members. You can still do this with a closed account but you usually have to be friends with or following people you want to add, the difference when having an open account is, people are able to find you, your groups and events easier by searches and hashtags. Having an open account is also great if you want to share news with wider audiences via stories.

For me personally the con in this instance is, if everyone can see what you’re doing at all times they often forget to actually communicate with you, making assumptions based solely on the information you’ve shared and never actually bothering to dig any deeper. You’re more susceptible to lurkers, people you know but whom never bother interacting with your posts. I come across lots of these and it can be a bit of a kick in the teeth at times, people who you think are your friends watch your stories see your good news or your struggle and don’t ever bother to engage. I even have extended family members that do this and some of them would argue they don’t need to ask because they stay up to date from my posts. So although I do believe making new connections is great, it can pull you away from real life connections with people at the same time.

To summarise, I think it’s important to spend some time figuring out what you wish to get out of your social media platforms and if it’s just to keep in touch with people you know a private account might suit you best. If it’s to bring attention to important topics, find new connections and partake in collaborations then a public account might work better for you. Either way it’s clear that each option has their own benefits and disadvantages.

Week 22 of pregnancy, carrying you, baby #2

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.

What’s it like to be half way through a high risk pregnancy?

Lonely. Because everyone experiences pregnancy differently and when you’re more worried than you are excited, people think you’re being negative.

Hopeful. Because hope is all you really have. We can’t change the future or the past but we can hope for better.

To get excited could mean to jinx it. I don’t want to rave about how excited I am when I still can’t fully envisage a happy ending.

Only another 4.5 months to go, I can do this.

Oh shit another 4.5 months left of this, I can’t do it anymore.

What does high risk mean?

Different things for different people, even pregnancies for mums without underlying health issues come with environmental risks. Sometimes the risk will be more prominent for the mother and sometimes for the baby. But risk factors can be present for both.

What does in mean in my case?

For me, it’s meant the risk of long term immobility because my Symphis Pubis is at risk of rupture and I can no longer walk. It means another 4.5 months minimum of immobility to go. If the SP ruptures it could mean further more extreme long term disability, loss of mobility, incontinence and need for surgical intervention.

Preeclampsia. You are more at risk of preeclampsia if you had it during a previous pregnancy, which I did. I have had also high blood pressure throughout this pregnancy along with chronic migraine. Migraine can be an indicator of preeclampsia and I’ve had one every 3-4 days for the last 22 weeks. So you can imagine the worry is ongoing, and the risk of early onset preeclampsia is higher. Survival rates for babies increase significantly if preeclampsia is developed later in the pregnancy.

Withdrawal. 1 in 3 babies exposed to medication in utero are at risk of being born with Neonatal Abstinence Syndrome. Ciara was born with NAS from antidepressant medication. I no longer take antidepressants but I still take medicines that I need to be able function medication that I will be on for the rest of my life in all probability. I take more medicines than I was taking when pregnant with Ciara so our risk is already much higher this time.

Underlying health conditions. Though Fibromyalgia & Migraine don’t directly impact the baby during pregnancy, the reduction in medication along with hormonal changes exacerbate symptoms drastically, and I have spent the last 22 weeks in pain, every second of every day. There are no ‘good days’ we are getting good hours and that is the best we can hope for. We know pregnancy is impacting my health, but we don’t know what it means long term.

When you tell me it’s not forever I am reminded of how long I have left to go being unable to walk, dress myself and cook, and that actually as a functional human being I was already struggling. A positive mindset is very difficult to hang onto when you lose your sense of self through physical disability. Your mind knows what’s going on but your body doesn’t do what you want it to.

When you tell me you’re excited for me I’m reminded of how scared I am. I’m reminded that I too should be excited, instead I’m fearful.

When you ask how’s the baby? I’m reminded that I’m their house and I don’t know really how they’re doing, not really, because until they are here and in my arms I won’t know if all of the above risks have impacted their development. I wish you would ask me how I am instead because that’s a question I can answer. But when you do and I’m honest I feel like it’s the wrong answer and I’m a burden, so again I feel forced to stay optimistic about something that scares me.

It’s been 22 weeks of anxiety, worry and physical disablement for me and though we have hope, hope is still all we have.

Nobody knows what to say so they stop saying anything at all and some might question why I even bothered to get pregnant in the first place if all I am going to do is complain. But my complaints are not born out of a dislike for pregnancy. They aren’t because I don’t want my baby. They are born out of fear and worry and the inability to fix a broken body. They are born from exhaustion, and guilt and trauma.

I do need help, but I won’t ask family and friends for it because it makes me feel like more of a failure and because I know that every single person in the world right now needs something. I know that people are all going through stuff, maybe worse stuff like dying and losing loved ones and everybody’s mental health is in a state of decline, so what makes me special? Nothing.

So why am I speaking up? Why don’t I do my wallowing in private? Because I still want to feel connected. Because I don’t want to be the person who suffers in silence anymore. Because if it was my daughter going through this I would want her to feel able to open up in whatever form that helped her, and incase you’re new here. Writing is what helps me.

Today we found out the gender of our baby, and all I could think was at least they’re alive. Grief does not only come from loss, I am grieving the excitement I want to feel, I’m grieving the process, and I’m grieving past pregnancy and birth trauma that still haunt me vividly whilst I wait for the arrival of my second child and hope that when they get here I will be strong enough to keep them safe. I am grateful that we have gotten this far, and I am hopeful that will can get to the end.

I’m grateful for a little girl who can’t wait to find out if she’s having a brother or sister and who has enough hope and excitement for all of us.

A letter to myself.

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

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.

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

Unhappy New Year

So I think it’s safe to assume New Years Eve is cancelled this year, at least cancelled as we know it. Unpopular opinion maybe, but I’m so glad. I don’t get excited about getting dolled up after a week of eating more cheese than all of the mice in the country combined. The thought of squeezing myself into an LSD (little sequin dress) actually gives me nightmares. I also haven’t drank any alcohol since August so the a hangover that was sure to accompany me with celebrations will now stay firmly in my past, and maybe somewhere in my future but not in 2020.

Another reason I’m glad is I just don’t have the stamina for long drinking sessions these days. Alcohol triggers migraines, dancing for long periods exacerbates pain and booze also has a tendency to induce hangxiety, anxiety brought on and influenced by the onset of a hangover. I hasten to add, I’m also one of those people that needs a drink on a night out, otherwise I’m just happier in my pjs, so that’s where you’ll find me on this night in.

Kissing and hugging at midnight is not allowed with social distancing measures in place and so we probably won’t do much of that either. Maybe a mulled wine and more cheese to celebrate the beginning of another undoubtedly difficult year. On New Year 2019 I was 17 days away from getting married. I was eager and keen to start the new year off with a bang but this year I don’t think I’m alone in saying, I’ll be glad to see the back of it.

I’m not one of those people that moan about everyone’s New year new me posts, because I think if setting yourself new year goals helps you reach them, then just do you. It’s nobody’s right to shit on your parade. For me personally, I find I usually set myself up to fail so that’s why I’ve kind of done away with resolutions, but I’m definitely not opposed to them. I’ve recently gone from being someone with a chronic illness to someone with a chronic illness who is clinically vulnerable to covid, so I feel like the main resolution for me needs to be to look after my health better, again let’s not apply too much pressure, somedays getting out of bed is hard enough.

It’s a weird, weird time. Phrases like ‘when this is all over’ and ‘unprecedented times’ have become so ingrained in societal vocabulary I’m struggling to not grit my teeth at the sound of them to be honest.

I wanted to include some positives in this post because there have been a few for us as a family, but I kind of got berated for talking about being happy recently, as though I was boasting and aside from the initial feeling of reprimand, I get it. For some, maybe even most, this will have been the worst year of their entire lives and I by no means think it’s been a good one, I’m just trying hard to hang on to what I’m grateful for, it’s helping me cope amidst the chaos to be honest.

I’m thankful that I got to get married. I’m thankful I got to see my little girl start school, and I’m thankful to have people to love and to have people that love me.

But – I also want to say that if all you’ve done this year is survive, if all you’ve done is put one foot in front of the other, if you’ve struggled, if you’ve broken down, however you’ve coped. I’m glad you’re still here. I hope in 2021 we can all be less judgy. We don’t know people’s individual circumstances, so before posting about people not social distancing make sure you know for a fact those people aren’t bubbled up. Before you berate someone for not wearing a mask, make sure you know they aren’t exempt for medical reasons. I’m not saying their aren’t dickheads in the world blatantly flouncing rules making things harder for all of us trying to do the right thing, of course there are, but there are sometimes just people, using methods of survival that we have absolutely no idea about.

I, like everyone else want people to follow the rules to ensure this shit show is over quickly, but I don’t believe warring with each other is the way to get there. We can blame each other until we’re blue in the face but it won’t make an unhappy year any happier. I’m trying very hard to ditch the blame next year and accept some of the things I can’t change, and learning when to challenge and when to mind my own business.

Whatever your New Year looks like, if you have a vision board bursting with ideas or you’re just winging it, I hope that 2021 is better for everyone everywhere. We all deserve that.

This blog can also be read here: House21

Married a year, plenty of tiers

Married a year, plenty of tears and even more tiers.

It’s whole year since I wrote about getting married. One whole year since I woke up in a suite bigger than my house, in my favourite city next to the man I now call my husband.

So how’s it going? Marriage. What does it really mean? In all honestly I’m not sure I even know. It’s not what I expected, but I’m not sure what I did expect. Ok I know I’m going round the houses here, but I honestly feel a bit flat.

I love having the same name as my family, I love my husband and I loved our wedding but as far as actual marriage goes it’s been pretty unremarkable.

There was of course the initial wedding hangover, those really do suck. Wedding blues are real. All that planning, and all that pressure for one or in our case two, days.

There’s also the reality that people let you down with weddings. I came away from our wedding party after all the preparation wondering why people behaved the way they did, or why they didn’t bother showing up at all on what was essentially the biggest day of our lives. Of course some people have genuine reasons and I’m a renowned plan canceller myself, so I don’t hold grudges, but it’s definitely one of those things that whittles out the people who aren’t on you’re team, and in hindsight that’s ok. It just took a while to get to grips with.

Then you have the politics of merging families and friendships. You might have gotten away with avoiding most of the people you don’t like up till that point, but a wedding brings everyone together. It’s one of the reasons we got married on our own, so it could just be about us without having to worry about offending someone, people seem to get really offended about weddings that aren’t their own!

There has been no honeymoon period (or honeymoon) because Covid literally started for us as soon as we got back from Ireland. Shaun thinks he had it upon our return, he was in bed for two weeks with a fever and he couldn’t breathe, at the time he was diagnosed with a chest infection, he’s asthmatic so that’s not unusual in winter, but it didn’t respond to antibiotics and he lost his sense of taste for months after. Then after our wedding party in the uk we literally went into lockdown weeks later.

On the plus side, I know we were unbelievably lucky to get married in 2020 at all! With so many having their big days cancelled, and for that I am so grateful. We really did have the best wedding day ever and on a reasonably acceptable budget too.

There was a time, not too long ago where I didn’t foresee a wedding in my future. Yet at the age of thirty one I married my best friend and our dreams and plans of honeymoons and married life went kaput with the rest of the world, and whilst our celebration feels all too soon forgotten, we have memories to last a lifetime.

According to statistics printed in Bride magazine the first year is the hardest and I’m only a year in, but I’m inclined to agree. Apparently this is down to the stresses of modern living, the come down from the wedding and combining finances. But Shaun & I have lived together for six years so I’m not sure all of those are applicable to us. Maybe it is just the effects of covid, or maybe it’s that relationships are hard, and after the whirlwind of weddings and babies comes the real work! Like the realisation you have to put up with snoring for the rest of your lives, or that picking up dog shit in the garden is a way to earn brownie points.

In recent instagram polls I asked the following questions.

1. Is the first year the hardest? 24% voted yes whilst the other 76% voted no.

2. Marriage feels no different from before? 81% voted that this statement is true, marriage feels no different to before.

3. Wedding comedowns are the worst. 85% voted for yes, and 15% voted no, not sure of its relevance but most of the people that voted no, were male.

4. Has lockdown negatively impacted your marriage? Surprisingly for a long while the vote was overwhelmingly, no. But eventually finished on 42% voting yes, lockdown has in some way negatively impacted their marriage.

When I asked that final question, I had an influx of messages about how people were finding their spouse’s overwhelmingly irritating, but they by no means were filing for divorce. I think this is what resonated with me. This last year Shaun and I have probably argued more, spent less quality time together and just generally pissed each other off more than ever before. However we’ve also been there for each other and so despite feeling like I want to kick him in the dick, I’m still very much grateful that I have him to lean on. I definitely don’t regret getting married.

Usually we’d spend our anniversary weekend, which is also my husband’s birthday, in Ireland. But with Lockdown that’s not possible. Instead I’ve been frantically Pinteresting date nights at home and first anniversary present ideas. When all I really feel like doing is hiding under the covers covering up that 2020 Xmas and New Year bulge. I’m also pregnant now so there won’t even be any champagne or Guinness!

Despite all of this, I know with a full heart we are lucky to have each other and the fact we’ve survived this year at all is a blessing, the fact we survived it together was dedication.

Migraine – not just a headache

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

Therapy is not just for picking up broken pieces

A couple of weeks ago I had some news that really turned my world upside down a bit. I haven’t talked about it much because there is so much other stuff going on, but it’s been a struggle managing my emotions. I felt myself spiralling a bit, like I do every so often, usually when I’m due on. I decided to try and get ahead of this, so I called my GP who offered to refer me for talking therapies. I’ve had talk therapy before, many times actually, sometimes it’s helped other times not so much, but I’m never opposed to it, because I believe when you’re feeling mentally unwell you need to be open to trying things that might help. So I gratefully agreed to have a telephone appointment.

The lady I spoke to ran through a standard mental health questionnaire, then at the end she said I score mildly for depression and anxiety. I told her yes, it is mild at the moment, but I’m trying to intercept it before it gets moderate-severe. Her response was that I don’t meet the criteria at this stage for ongoing therapy. I’ve had this conversation before. I’ve written posts about it before too. I feel like this is the reason we are in the crisis we are in with mental health in this country, because we are waiting for people to be in their own full blown mental health crisis before offering them any support. I know that whilst the NHS is under so much pressure their resources might need to be elsewhere, but this isn’t a new thing; even before covid people were being turned away for not being depressed enough. Because I don’t want to die I’m not in crisis, because I’m not self harming or hurting anyone else I’m not in crisis. The sad thing is… I have wanted to die. I have self harmed and I have hurt people I love in the process of all of that. This time, this time I wanted to ask for help before I spiralled, before I lost control and needed to pick up the broken pieces of my life for the hundredth time.

Instead I got given some reading material and a thank you for my time.

This is not enough. Luckily for me. I am well aware of my triggers, I’m aware of my privilege and I have a great support network in my family. There is always the option to go private, but with my physical health being as rubbish as it is I usually need to top up care with massage or B12 injections, therapy is an added expense and when you’re down to the last penny you usually have to sacrifice one or the other. The trouble is with therapy is, it’s not just a one off cost. You have to pay this every week or every month sometimes forever and my fear is I’m one of those people that will need therapy forever. The thing with physical health is it affects our mental health too and so if I sacrifice the things that make me feel physically better, I’ll also be putting myself at a higher risk of feeling mentally worse. The struggle is real.

Life is hard right now for everyone and there will be people out there in worse situations than myself, probably not getting the help they need either. Learning to live through these times has been a colossal trek and we are all still hiking up cliffs hanging on for dear life. But mental health is not a new problem, it’s not a craze or a trend, it’s a continuous battle in the modern world, a battle that if not fought early and hard, can be and too often is, deadly. It’s a life threatening problem that we as a society have still not been able to tackle.

It’s great to post about mental health and raise awareness, open up and find solace in each other online but still this isn’t enough. Saying it’s ok to not be okay is one thing, telling people to reach out is another, neither are cures for a breakdown or social anxiety and sometimes they’re not even easy to do. I may know I’ll feel better if I reach out but doing it is a different matter all together.

So what can you do if you don’t meet the criteria for intervention but are still struggling? You can prioritise self care. You can access online support. You can reach out to family members or friends if you feel able. You can make time to read, write, do a course that makes you feel better about yourself. You can practice breathing and you can call any of the below numbers for professional support. If financially able you can look into finding private therapists that are able to support you long term. What you mustn’t do, is feel like the lack of free support available means you’re not worthy. You are. Whatever your next move is, please take this reminder that your struggles are valid. Your life still matters and you are going to make it.