Confessions of a chronically ill mum #15

Hey! If you’re reading this, thank you. I’ve been really trying to up my blogging game of late, and it’s hard to keep up the momentum to post regularly sometimes, so I appreciate and value your time as readers, immensely.

I posted to Instagram yesterday confessing that I’m feeling really quite triggered by my son Kaiser’s fast approaching first birthday. I don’t remember feeling like this on Ciara’s first birthday, despite the memories of her in NICU I just felt proud and glad to have made it twelve whole months, and whilst I still feel proud and glad to have made it twelve whole months with Kaiser, the memories are stirring up emotion, too!

In other news, I’ve had my first physio appointment 18 months after the onset of pelvic dysfunction. It’s a long road to regaining strength, but I know I need to focus and do the exercises provided to get the best results.

Another confession from me this week, I’ve been eating really badly. I have zero motivation, hormones are wreaking their usual havoc and I can’t focus on eating well. I’m craving all the wrong foods and it’s doing me absolutely no good whatsoever. I need to do better. I know that diet affects how I feel and even though I know this I still find it so bloody hard to get it right. Our Gousto box usually turns up on a Monday and at least takes one problem (deciding on what to eat) out of the equation. Except, this Monday it didn’t turn up and that means I have to go shopping with no idea what to buy and even less idea of what to cook. If you’re a food blog, help a girl out, give me your best ideas.

Platty Joobs Stuff

I had a bloody lush little rendezvous with friends over ‘Platty Joobs’ last week, it was proper soul food. If you’re wondering if I’ve suffered because of it, then the answer is not as much as I thought I would. I really did enjoy myself despite not really drinking much alcohol. I laughed a lot and just felt really safe and able to be myself, which is something I value in my adult friendships. Following the rendezvous, Shaun and I spent all day Friday in bed, eating, chilling, binging Power Force and just being our pre kid selves, which was a delight. On Saturday I was starting to feel hormonal and my mood plummeted a bit, I’ve been feeling Fibro flarey for weeks and this was more prominent on Saturday too, but we got outside with the kids and it perked us all up for a few hours. Following that, Kaiser was sick everywhere and has slept like shit since. Oh and Ciara has another cough. The joys, eh! You know what though? We’re ok. We’re not great, we still struggle, the battle is ongoing, but in between, during mundane moments and fresh air, and sofa snuggles, we’re ok.

PLATTY JOOBS
WOODLAND WARRIORS

Final note, please remember I’m still looking for content for Dear Steph you can email in your dilemmas to divamumsteph@hotmail.com

Sometimes mummy forgets.

‘When you say you’re going to do something it takes a really long time sometimes, and sometimes you just forget all together.’

My six year old said to me tonight as we thought up new ways for her to learn her spellings. I spent ages cutting up letters so she could arrange them correctly. The traditional practising aloud was becoming tiresome for her and I could see her frustration. ‘Mummy doesn’t ever mind you getting something wrong, it’s how we learn’ I said to her, face screwed up in confusion at why she’s so upset. I want to prod but not too hard. I want to ask her why her emotional reaction is so major to something so minor. My brain working overtime, wondering whether someone has ever made her feel inferior for making a mistake, hoping that someone has never been me.

‘We still haven’t done my homework, you said we’d do it last night’

I did say that, but last night I was in bed, a migraine attack had me so sick, I couldn’t see, mid-cycle bleeding, cramps, along with feelings of anxiety and guilt all throbbing at my temples. I’d discussed with her how we were going to do her homework, we’d talked it through and even thought of different mediums to use for a collage. Then, like she said, I forgot. I had to work today, her brother up every two hours in the night, I can’t remember the last time I managed to watch a tv show all the way through with my husband without being interrupted by ‘I need a drink’ or ‘Waaah waaah waaaah, cough, cough, cough’ from the baby. The car was in for MOT today. I forgot to check out my online food shop too, and when it didn’t arrive as I expected today at 12 noon, I had a few choice words for the Asda customer service lady. That was until, I realised my error, apologised profusely and cried into a cold cup of tea.

‘You said we were going to put my picture in a frame’

I have no idea which out of the twenty seven pictures she’s drawn this week she’s referring to. I’ve forgotten. I love her artwork, but they’re not always memorable and some of them are awfully samey. I still love them, but not enough to frame each and every one. My hormone addled brain cannot hold on to another memory of felt tip hearts and swirls, or colouring pencil sketches of trees and mermaids.

‘You said I could have a balloon at the food festival, but we didn’t get one’

She’s right, I did say that, not wanting to get it on arrival in case she let go and the six pound foil dolphin flew up into the sky, never to be seen again. I had meant to get it for her before we left, but it was busy, the throng of bodies distracting me, exacerbating the heat from the sun. All of us tired from being amongst so many people. Her brother on his fifth suncream application. A desperate bid to get us all to the car before he woke up and terrorised us with post danger nap screams, on the ride home. I forgot. I just forgot.

And you know what? I feel bad. Of course I do. Every time I forget and she remembers, I feel terrible. But she forgets too. She’s forgotten that mummy took her to Little pink café on Saturday and the food festival Sunday. She’s forgotten that I tuck her in every single night and make sure she has clean clothes and her spellings are done, her books read, her PE kit ready, clothes for forest school too. I make sure she has money for whatever mufty day is occurring this week. That breakfast club is booked, and nanny’s picking her up. I’m also pretty good at whipping up a costume or two for the seemingly constant dress up days and Easter bonnet parades. She forgets to brush her teeth but I remind her. I clean her eyeglasses every night before she goes to sleep, and when she’s finally spent, I creep into her room and make sure she’s tucked in. I stroke her hair back from her face and tell her again (because I’ve already told her 100 times that day) how much I love her. She doesn’t know the impact of a mother’s load. To her it’s promises broken and forgotten moments.

Sometimes I forget things, but I remember a lot too. I remember without fail to remind her just how adored she and her brother are. Every day, of every week, of every year and I’ll continue to do that until it embarrasses her in front of her first crush, I’ll do it when they’re thirty and maybe have their own children to love. I’ll never stop. Because every word I say and every promise I make, is true, and yes I might forget, but when I’m reminded, I try my best to follow through. And our best is all we’ve got, right!?

If you’re a mummy that sometimes forgets and feels bad. Know this, it’s not just you. You’re not doing it wrong, it’s just hard. And if you’re worrying about being a good mum, the chances are, you already are one.

Confessions of a chronically ill mum #7

We started well. The weekend the kids and I went for a short walk on our own. This was a big deal because I rarely go out alone these days, and it was the first time I’d been out on foot with both children. As my health has worsened so dramatically in recent months, I have developed quite significant, but understandable, health anxiety! I took the win Saturday, rested in the afternoon and woke up Sunday ready to attack the day. But it didn’t quite work out like that. I woke up feeling extremely fatigued to the point where I couldn’t keep my eyes open and had to have a nap mid afternoon. For most of us with fibromyalgia this is normal, particularly following a day in which we’re more active. However, for me, fatigue is also a symptom of the pro-drome phase of migraine.

Being the hormonal mess that I am, I have noticed migraine attacks increasing in frequency again in the last two months. 2am Monday morning I was woken by the head pain, swiftly followed by cold sweats, hectic fever and vomiting. Monday was a write off. I spent all day in bed unable to watch tv or read and silently crying in between naps. I’ve said it before, but migraine is the most debilitating symptom for me, even more so than not being able to walk well, because migraine is a complex neurological disease that affects everything!

Fast forward to today, Thursday and I am feeling better. Not by any means ‘well’ but I was able to get out yesterday and I haven’t needed my husband to stay home from work to care for me. I also managed to get out this afternoon even though I couldn’t think of anything worse at the time I forced myself to do it and I have to say…. I’m converted. All the times people said to me ‘you need to get out’ while I led in my bed riddled with pain and anxiety, I thought those people were prize pricks to be honest, but I can see there’s merit there. I will say it’s not as simple as just getting outside when you live with chronic and or mental illness, and even in motherhood it can be hard to just get up and out. Let’s be real here it takes longer to wrestle a screaming baby into the buggy and pack your nappy bag than it does to do your weekly shop! But if you can get outside, you may benefit to some degree. For me the benefits are:

  • It’s a scenery change from the monotony of mum life.
  • I feel a sense of achievement if I’ve been able to do something, even if it’s as simple as popping to the shops.
  • That sense of achievement rewards me with feel good endorphins.
  • It’s so much easier (for me anyway) to be ‘present’ whilst in nature and not dwell on negative thoughts.
  • It’s free!

During pregnancy when I ate every meal in bed and couldn’t get down the stairs, going out was not only a physical impossibility, but it became mentally terrifying. I avoided leaving the house for so long, doing it now feels alien, but it also feels good. I feel like I’m taking back some control.

I don’t have any major confessions this week, other than I’ve spent a lot of it feeling sorry for myself and on occasion a little bitter about how shit and unpredictable life can be when you’re unwell. I’m worried about how I’m going to do my job in a few months when I’ve already cancelled a Keeping In Touch Day because I was so unwell. However, those feelings were scuppered by guilt as they always are when I look at the bigger picture and remind myself how lucky I am to have the life I do. I’ve also learnt that life is more fun and fulfilling when you’re grateful for the tiny things. Like a hot cup of tea or getting into bed with a good book.  Kaiser, my youngest, is an absolute rogue. I’ve had to take deep breaths a plenty in the last couple of days whilst trying to stop him climbing the stairs and then throwing himself down them. Dunno if this is a boy thing but fuck, it’s hard work. 

It’s easy for me to write this today because today has been such a huge improvement opposed to earlier in the week. That’s not to say I won’t feel the sadness and resentment again in the near future, but it means today I choose happy. We don’t always get a choice, and so on the days that we are gifted one, we have a responsibility to ourselves, to make it a good one.

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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.

What does family mean to me?

It’s no secret that I was abandoned by the man who fathered me, whilst I was still a tiny mass of cells in the womb. When my mum gave birth at 28 weeks with me weighing just 2lb 10oz, she did it alone.

My father has at least 3 other children, two he had with a wife, and another one of me, born out of wedlock and cast aside as a mistake.

I never really respected (I say respected as opposed to understood, because I still don’t understand) the magnitude of what it must be like to be a single mother, until I became a mother myself. I became a mother with a solid partner, I’m becoming a mother of two with a husband. I have no idea what it’s like to parent solo, and hopefully I’ll never have to find out but I have nothing but admiration for my mum and the many other mothers that have no choice but to face the challenges parenting brings on their own as well as the ones who choose to.

We can be a bit of a dysfunctional family to be honest. In a conventional way. For whatever reason I’ve drifted from extended family over the years. I don’t have close relationships with my aunt and uncle, and very few of my cousins. My sister and I couldn’t be more different. There’s ten years between us and she had a different upbringing to that of my own, but we are close and I love her to bits. My mum and I are best friends but we do clash occasionally, when we do it’s a head on collision. That said I don’t know what I would do without her. We communicate with each other very well and have a mutual respect, as well as a deep and unconditional bond.

My husband is quite a quiet man, unless he’s had a drink (which isn’t often) when he becomes a bit of a clown. He doesn’t stress about lack of closeness to family or friends, where as I keep mine really close and feel absence like it’s abandonment. He is reserved with his feelings, but doesn’t worry about what other people think of us ever, where as I worry about everything. Not necessarily perception, but I worry about accuracy, I want people to know the real me, the truth, and I get frustrated when opinions are formed based on inaccuracies. Where as Shaun, my husband, doesn’t care – and it’s a quality in him that I envy.

It’s true that despite not having a large close knit family, I love family life. I love being a mum, I love being a wife, I love having my mum a constant in my life and can’t go a whole day without having texted her.

When I did meet my biological father, it didn’t bring me anything, not closure, not peace, nothing. I believe family are the people you can count on, the people that support you, know you and actively make an effort to be in your life and I don’t believe they have to share your DNA – he did none of those things, my dad, and therefore has no place in my life. I don’t hate him, because I don’t really know him, I just know he’s not the man he was supposed to be for me and I’m ok with that now.

My daughter is the backbone of our family, she brings everyone together and shares all of her personality with everyone she meets. She unites us when we’d sometimes struggle to find reasons to come together. She looks like her Daddy but she has my openness and lack of filter. She has my fire and sensitivity and her Daddy’s kindness, humour and carefree attitude. She is the perfect mix of both of us and I love her with such ferocity it scares me.

She has grandparents and stepgrandparents and she has never asked who my daddy is, (in fact it took me ages to convince her that her nanny is my mummy) but that day may one day arrive, when it does this is what I will tell her:

I will tell her and her brother (who’s not yet born) that families are a beautiful mass of complexity that never look the same, some people have two mummies or two daddy’s and some have only one of either. Some, like hers, have one of each. Some have siblings and some have none. Families are sometimes of different ethnicities and not all mummy’s grew their babies in their tummies.

I want her to know that family doesn’t have to mean inseparable, but it can if you want it to. Family doesn’t have to mean best friends, but it’s great when they are the best friends you’ve chosen.

It’s an ancient idea (IMO) that you must bond with someone who’s a blood relative, but it’s lovely to do so if you’re able. I don’t want her to feel forced to bond with someone just because she’s related to them, but I will encourage the bond if it’s what she wants. Family can be friends you’ve chosen, it can be in-laws, god’ and step parents, and it can look different for everyone.

Family to me simply means, the people you love. The people you want to show up for. The people you can rely on, but also the people you choose to support. Family means a mixed blend of give and take and respect and kindness. Family means traditions and memories. Friends and pets. I don’t like cutting people off, ever, not family or friends, but the older I get, the more I notice lack of effort. I don’t mean forgetting to wish someone a happy birthday, I mean not attempting to connect, and when I feel it, the less likely I am to put effort in in return. I’ve always been a person that organises people, I arrange gatherings, I’ve always hosted and I always encourage communication, because I’m a good communicator – but the older I get I realise you can’t force people to be in your life, so if they’re not, it’s likely because they don’t really want to be and as much as it stings sometimes, we have to let it go. Ciara has 8 godparents, approximately four of them interact with her. I have family that have never met her, and maybe never will. It’s not my job to force myself or my kids on people. If they want to be involved they will. If you want contact with someone you’ll request it, irrespective of being asked. Life is busy and time passes quickly even when it feels slow. To me it’s not about grand gestures, it’s just about showing an interest. Family are the people you laugh with, trust, spend time with because you want to, and they are the people that check in to see if you’re ok. They’re also the people you remember to check in on, because you want to know they’re ok. They are the people who fill our hearts with fun and love and are the shoulders we cry on. They are not always or only the people that created us or the people that are related to us.

My family, plus one in utero

Motherhood is…

I wrote this poem to get behind an Instagram campaign called #Riseofthemumpoet it’s a fun and expressive way to write and share your story. And everyone knows I love, writing… AND sharing! 😂

Motherhood is

It’s not a day in a mums life if you were only asked twice,

For us mums can be asked the same thing as many as 50 times.

It’s not because we aren’t listening

That they continue to keep repeating

It may be that we’re cleaning up dinner plates,

Or god forbid finally eating.

It could also be that we’re scrolling aimlessly

Staring at our phones

Watching all those perfect mums

You know the ones who never feel the need to moan.

But being a mum is more than just annoying questions of course.

It’s wiping shitty arses and kissing grazed knees

It’s wearing a constant smile even when it feels forced.

It’s reading a story then lying still as a statue in the dark next to their bed

Pretending to be fast asleep and simultaneously stroking their head.

It’s pretending to be brave when you feel really scared.

It’s sometimes sacrificing yourself so their feelings are spared.

It’s leaving the house with sick on your clothes.

It’s wiping green snot from a runny nose.

It’s missing your favourite programme repeats

You’ve had to nip out to get milk & after dinner treats.

It’s staying up late making costumes for school.

It’s accepting that motherhood doesn’t have rules.

It’s forgiving yourself for sometimes messing up

It’s begging the stars to grant you good luck.

It’s feeling the weight of the world on your shoulders

And feeling nostalgic as your child grows older

It’s praying to a god of which you may not believe

To look out for your offspring and help them succeed

It’s a feeling of pride you didn’t know you possessed

And wanting every single morning just five more minutes in bed.

You can find all the details about the campaign and write your own poetic masterpiece (or riddle) on Instagram via @Postpartumpoet or by clicking the link here.

Things I’ve learned this Easter 🐣

The holiday is over, we’re slowly approaching the warmer climes and ice creams have again become the daily expectancy of my three year old. But what has the Easter holidays taught us?

Well it’s taught me a few things, that’s for sure.

1. It’s taught me that you don’t mess with a toddler’s scooter, no way no how! Stone on the path? Better get it the fuck out the way mate. Wheel’s dirty? Mummy, clean scooter, now please! Helmet hurts, don’t want to ride that way! Hey where’s my scooter? Out the way kids, diva coming through!! And so on! Was either the best of worse buy of the year, I’m still undecided!

2. It’s taught me never to order a meal out for my three year old. She will only refuse to eat it and proceed to scream whilst we are trying to eat ours about how ‘yucky’ the chips are (they are her favourite food, FFS) May as well take some crisps and be done with it.

3. It’s taught me that I need to be careful about what I say.

‘Stop moaning mummy’ actually came out of her mouth yesterday, seems she’s got my number marked!

4. It’s taught me, free fun is the best fun. Who needs Lego land and Longleat when you have a wilderness on your doorstep? Live need a wood? Make believe play is for you! We slayed monsters, made fairy gardens, fished for newts and skimmed stones on the stream. And it was FREE!

5. A bit more on the free fun saga. It’s taught me no matter how much money you spend if your child is cranky a trip to the fayre won’t remedy that. You can have the best day planned, but toddlers make their own rules. If they don’t want to do something no amount of money will change that. Don’t take it personally, sometimes kids have bad days too.

6. It’s taught me that children as young as three, absolutely do have their own minds. I bought Ciara these amazing Dorothy style, red glitter Converse for her birthday. She categorically refuses to wear them, I’ve even tried hiding her other shoes to try and force them on her. Hasn’t worked. Moral of the story, don’t spend £35 on your three year old’s trainers. (Unless you’re prepared to just stare at them.)

7. And finally, it’s taught me that time goes too quickly. The long drawn out half term I was dreading just two weeks ago is now over. The birthday party we planned for Ciara almost 6 months ago has now been and gone. She’s another year older, as am I. Time is precious, it really does fly by when you’re having fun. Make the most of it, take it in, even the drama and the tantrums, because one day in the not so distant future they will end too and it’ll all be just a collection of memories.

Easter has never been big on our celebratory calendar. Before Ciara arrived I can’t even remember the last time I got an Easter Egg. We aren’t religious and therefore it’s never had any sentimental or meaningful value, but now it marks a new tradition for our family. One that involves picnics and Easter egg hunts in Nanny’s garden.

Below I list some of the places we visited this Easter local to Bristol, that were fun and free:

Willsbridge Mill. https://www.avonwildlifetrust.org.uk/reserves/willsbridge-valley

St George Park https://www.bristol.gov.uk/museums-parks-sports-culture/st-george-park

Weston Super Mare Beach https://www.visitsomerset.co.uk/explore-somerset/weston-super-mare-p500433

Chew Valley Lakes https://www.avonwildlifetrust.org.uk/reserves/chew-valley-lake