Confessions of a chronically ill mum.

I stood on my mum’s drive yesterday morning, trying to make plans to go for a walk together like we had earlier in the week. As I walked away from her with a ‘provisional’ plan for the following week, I felt sadness, embarrassment and shame. My mum is my best friend. I needn’t feel any of these things in her presence, but the truth is, I feel it in everyone’s presence. Since the beginning of December my physical health has been increasingly hard to manage. I have spent days in bed. My husband has had to take days off from work, and my daughter has said the words ‘when you feel better, mummy’ on repeat. I missed a visit to Santa with her, and I didn’t get to spend Boxing Day with family as was planned. Then on top of that, we all, everyone in our house, caught covid.

I’ve cried in pain holding my son and I’ve listened to his cries when I’ve been physically unable to hold him any longer.

I’ve also had good days. I had friends round and we toasted marshmallows in the garden. I sat through a pantomime with my son on my lap and my daughter by my side. I spent a night in a hotel with my husband. Following those days though, I suffered immensely for the privilege. That’s when life can be really sucky, when your body (and mind) punishes you, just for living. In the last two years I’ve abstained from alcohol. I’ve had one night out since August 2020. I’ve tried to eat better and I’ve tried to get enough sleep (not an easy feat with a baby.)

And I can say with honesty and confidence that I have done my best to partake in activities with my family. I have done my best to limit my symptoms. I’ve done an incredible amount of work on my mental health and I’ve worked through a lot of what was previously, unresolved trauma. I’ve fucking tried. But the thing with your health is, you can do everything right and still be unwell. You can do everything in your power to manage your illnesses and still suffer flare ups. You can get eight hours sleep and still be bone weary fatigued as though someone has poured cement into your bones.

I’m writing this because it’s true. Not for sympathy, though I’ll be honest, more empathy is always welcome. I don’t gain anything from sharing my illness and it’s trials. It doesn’t serve me personally, but occasionally I’m told it helps other people. I’ve said before, but sympathy is in short supply when people realise your condition is long term but not life threatening. Not life threatening no, but it IS life limiting in some way, every single day.

I feel often as if managing my health is a full time job. Being a parent is a full time job. I have no time for my actual job, and no energy left for anything fun. For six months I have had medical appointments every week, often twice a week. I’ve been unable to walk, and then I’ve been able to walk, followed by days unable again.

I often write about holding onto the good days and I stand by that, but it does get tiresome when you feel like you’re always being punished for them. I’m not even talking always good days, sometimes it’s good hours followed by a migraine, or a surge of otherworldly fatigue so achingly exhausting that there’s nothing left to do but take to your bed. The trouble with taking to your bed when you have kids is, you rarely get the opportunity to do such a thing, and secondly, but probably more notably, you miss things.

My confession is, sometimes I find the responsibility of my illness on top of the responsibility of my kids so overwhelming I pray for oblivion. Sometimes I find time with my kids assaulting to my senses. And sometimes I feel so guilty for their plight having me as their mother that I wonder if they are better off without me. 

Thankfully, and going back to all of the ‘work’ I’ve done on my mental health this past year, I know this isn’t true. I know they love me including my flaws, health problems and weaknesses, not in spite of.

I guess the narrative for this blog was to get these feelings off my chest, and also remind myself that (and I’m sure I’ve used this quote before) but….

Bad days do not equal a bad life

It’s hard being a mum regardless of health, wealth or any of the other things that make life easier. Perinatal depression and anxiety do not discriminate, chronic illness, illnesses of any kind actually, do not discriminate. The world is a tough place to parent, and knowing this doesn’t make it easier, but it does remind me I’m not alone.

Sending love to anyone else feeling like they’re on their knees. Know this, better days are always coming.

Another new year

Last year I wrote a post titled Unhappy New Year and in short it was about what a shit show 2020 had been for us all. At the end of the blog I gave myself some small resolutions, to be less judgemental and apply less blame, find the positives etc. It wasn’t until I read back over the post that I realised I have achieved most of them. I think my mindset is definitely different these days. Whilst I won’t pretend I’m Lady Optimistic I am more optimistic than the me of previous years. I’m also, so much more self aware. Aware in general. I have therapy to thank for most of these changes.

The first half of 2021 was awful for us. Worse than 2020, tenfold. With me being in a wheelchair, trying to homeschool and work from home, a baby on the way that I wasn’t managing to care for as I’d hoped, gestational diabetes along with other complications made me so unwell. It all felt as though I was on a rapid decline. As Kaiser’s due date neared, my mental health worsened. Most of you know what happened next, but in case you don’t, I was hospitalised and my labour induced after psychiatric evaluation. It was decided that for the sake of my mental health and the health of our baby, he needed to be born.

I’m six months postpartum now and on my road to recovery of perinatal mental illness. I’m working hard to regain my mobility, manage my chronic illnesses, care for a newborn, and five year old, keep house and balance my hormones, oh and avoid covid, there have been many, many, bumps.

However, I believe despite the awful ordeals we have faced, the fact everyone in the house contracted covid over Christmas resulting in a real scare with Kaiser (currently all still positive and feeling really quite bad) as well as living with perpetual lack of sleep, we’ve smashed 2021. As a family we have worked harder than ever, there are broken pieces where we were once whole, and there have been rivers cried too. Our marriage has taken a hit, and parenting two children instead of one has been a huge change for us. But, having weekly therapy, finding a decent medication combination, owning my shit, being brave, digging deep, along with all that mindful bollocks previously discarded as useless information I’ll never need has been put to great, life changing use.

I don’t believe I made it through 2021 on luck or a wing and a prayer. No, I made it through this year with sheer determination, love, and hard mental graft.

Two days ago I was back in the hospital I birthed Kaiser in. I’ve been there only once since I had him, and that was recently to find out I had a tumour (benign) in my left breast. During that appointment I had my mum holding my hand. The second time was two nights ago, alone, with a baby who’d just tested positive for covid along with a husband at home who’d also tested positive so couldn’t be there to support me and our son.

I sat in the hospital room and cried alone, whilst the nurse told me my baby would need oxygen. I cried again when his levels were back up and we were told we could go home.

I’m still suffering anxiety six months postnatal, but most of the time it’s in response to ‘normal’ anxiety provoking situations, like hospitals and poor health. The rest of the time I’m using the tools it’s taken me six months to master, to manage it. I’m trying to show myself compassion and I’m working really fucking hard on gratitude too.

As I write this late at night after finally getting my kids to sleep, oscillating between shivering and sweating buckets with a fever. I decided to think about whether I have any resolutions for 2022, and the truth is I do, but my main and most important one is, I plan to continue to heal. For myself, and for my family. My kids deserve a mum who isn’t falling apart at the seams, and I deserve the love and care I so readily give to others.

If I could give my readers any advice for the new year, it would be that you treat yourself with more kindness.

Ok so I’ll throw in a few more for good measure… here goes

  • Love the people who treat you well
  • Have empathy for the ones that don’t (unless they’re just c*nts, then fuck them) but try the empathy first. It might surprise you.
  • Stay in your own lane. Comparison is the thief of joy.
  • Tell people you love them, tell them often.
  • Stay in the present, if it’s not happening right now, it’s not happening.
  • Get more fresh air.
  • You don’t need permission to rest.
  • Don’t look back, unless it’s to see how far you’ve come.
HAPPY NEW YEAR FROM ME AND MINE TO YOU AND YOURS XOXO

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

Covid and kids

Ciara reunited with a preschool friend yesterday and it was a much anticipated reunion. However her attitude was really quite bizarre and I fear that lockdown life has widely contributed to this latest phase of brattyness. When we first met up she was quite obviously overjoyed to see her long lost friend and they played tag and tried to catch butterflies in their nets, it was a lovely watch, seeing her so obviously happy to be playing with another kid again. But this joy seemed to disperse quickly and Ciara became quite standoffish. She wouldn’t share her badges which we had specifically taken for the sole purpose of sharing. She kept telling her friend to be quiet and putting her hands over her ears when she was talking, something I’ve never seen her do before so I was as confused as I was pissed off at this point. I was getting more annoyed as I’d asked her several times what the problem was and why she was finding this play so overwhelming. She had no answer accept just that her friend was ‘annoying her’ (much to my embarrassment) we traipsed the woods some more. Me constantly trying to gain back her enthusiasm, whilst searching for the kind little girl I’d left the house with that morning. It didn’t work. She continued this level of spoiled brat for the rest of the outing, which resorted in me meting out a punishment of cancelling the cake baking we had planned for that afternoon.

I came away feeling deflated, which is much of how I feel often lately. Trying to make the days appealing to a four year old is becoming more challenging as we continue through this period.

In my anxious mind it just clarifies the point that my best isn’t good enough. Whatever I’m doing mustn’t be enough because Ciara is losing valuable social skills through this isolation. She’s constantly bored and it matters little how much time I spend creating small worlds on the Tuff tray or planning a scavenger hunt in the woods, she needs that time with other kids to learn and grow as a person. She’s an only child and whilst she’s always been great at sharing she is losing the need to. I’m not constantly reminding her of why it’s important because there’s nobody here to exercise the point with.

I’m giving into her because most of the time I’m trying to keep her quiet so I can get some work done, or shoving the iPad in her face so I can have a lie down.

I don’t know how to normalise what’s going on for her right now.

We need to protect our vulnerable people and stop the spread of the virus, of course we do, but our kids are vulnerable too, and right now mine is at risk of social regression. I worry about the effects on her mental health at such a young age being stuck in with me, who, lets be honest, is a not so hot mess, most of/all the time.

Preschool is such a huge part of early year’s development, I worry I’m just not able to meet all of her needs at home. There’s little option for her to go to another setting because it’s just weeks before the summer break as is, and I feel like that would only confuse her further. Not to mention we can’t afford it.

I know I’m not alone in this plight and I know some of you will be in the same if not worse situations. I just want you to know if you’re feeling lost and you’re kid has turned into a spoiled brat, you’re not alone. You’re probably spreading yourself too thin, I can’t offer words of encouragement, only that I’m riding the wave of this craziness too.

Tired and Needy – the follow up to Love For Lockdown.

I wrote a post a little over a week ago about my love for lockdown. I still love lots about it, like the family bubble and not having to worry about the outside world. In fact I still love it—full stop! Buuuuuut, I’m also losing my shit a bit. I’m still worrying about stuff that isn’t on the scale of importance to most people.

Like it’s a rollercoaster, right?

Up, down, plateauing and plummeting.

I struggle with life under normal circumstances I don’t ‘cope’ well on a daily basis. Well some might say I do cope well, and others think I’m mad.

— Balance

Writing is my salvation but I have to admit there’s little inspiration flying about my gaff, so I’m losing my creative flow and my anxious mind is finding room to fill up the creative space instead.

If you suffer from anxiety you may relate to some of this. Or you might think I’m a nut job. I am.

I have a brain that understands rationale but doesn’t practice it.

I have a desperate need for reassurance and it’s exhausting to be honest: it’s exhausting for me, it’s exhausting for my friends, my family, and  it’s exhausting for my husband.

Years of therapy and we’re no further forward in killing the bug that is my insecurity.

I know where it comes from – I don’t need a £50 an hour shrink to tell me about it (again).

I know it’s not rational or reasonable but I genuinely can’t help it.

I can’t help how I feel inside my head sometimes. I say sometimes, because it’s not all the time. Sometimes I am content, it can be fleeting, but it does happen.

I am one of the first people to harp on about getting the help you need when you need it for your mental health, but I have had help, lots of it in abundance, and variety.

I’m not fixed, because you can’t ‘fix’ people.

I manage better, better than I did 10 or 15 years ago, but my neediness and insecurity hasn’t dissipated, it probably never will, because it’s part of me.

It’s in my makeup to worry, fret & overthink.

During this lockdown I’ve occupied my days with all sorts of filler. Some of it has been really pleasant and some of it has been unintentionally damaging. The trouble is you don’t always know which is which until it’s too late and even things like reading books and watching TV can play a whole heap of havoc with an anxious mind.

If you too are feeling tired and needy I can only reiterate the importance of having a mental clear out! You’ve probably heard this a lot during the span of Coronavirus. I’ll say it again anyway.

Take time to find things that bring you small wins.

—Something that makes you grateful.

—Do something you enjoy like painting your toenails or going for a walk.

—Cook something exciting.

—Phone a friend.

—Be wary of what you’re watching and reading. I love nothing more than crime thrillers to read, but sometimes they get inside my head and it can create a state of heightened anxiety without me even realising it.

—Pick something you love about yourself and focus on it for a little while.

—Cuddle your kids and remind yourself you’re doing your best.

—Most importantly, be kind to yourself. It’s a tough time for all of us.

You’re not wrong for feeling how you feel. You can’t help it, but you can try to do little things that reinforce the positives. I’m trying to take my own advice today. I’m trying to do a few small things that help me feel better about myself and the current situation. Some days are all consuming and it’s ok to fall apart every now and again.

Feeling guilty about it won’t help. Instead try and concentrate on what’s needed to put yourself back together again.

I won’t profess to own the secret to a positive mindset, it’s something I battle with daily, but it’s also something that really does work if you can get the can of it. Positive minds attract positive vibes.

Stockpiling Covid-19 and my unpopular opinion.

I’ve been in bed for a week. With plenty of books and avoiding tele and scrolling as much as possible. I’ve still been on social media but I’ve ignored a lot of the Covid-19 stuff to prevent anxiety that I cannot control, whether warranted or not.
I, like many others, probably most of you, suffer from anxiety, so put a public health crisis in my post code and I will panic.
I’ve seen the jokes about the panic buyers and the outrage at how selfish these people are, I have zero doubt that some of them are just that. Selfish.
But there will be some people who HAVE to stockpile because their mental illness won’t allow them to do anything else.
People with GAD and OCD along with other panic and compulsive disorders.
Not everything is done with a complete disregard for others. Some of this stockpiling and panic is compulsive, not premeditated.
I haven’t stockpiled, mainly because I haven’t left the house and online shops have fuck all in either and also because my panic isn’t borne out of not having any toilet roll. It’s out of fear for the elderly, the young, the immunosuppressed, its fear for the economy, our jobs, our NHS. That’s not to say I won’t feel differently at some point and start thinking about shit differently (literally) I might well do.
The point of this post wasn’t to defend stockpilers, it was just to say, we don’t always know why people do what they do, and it may have absolutely nothing to do with selfishness and more to do with mental health. The message is the same to those that are selfish and to those that presume people are being selfish – just be kind. ❤️☮️🦠 and WASH YOUR HANDS 👏🏽 🚿