Confessions Of A Chronically Ill Mum #2

This week in our house everyone seems to be fully over the ‘Rona, except me, of course not me. My symptoms are lingering and have worsened whilst I’ve been in the luteal phase of my cycle. This isn’t unusual, I often get flare ups in all symptoms around this time of the month, and particularly symptoms stemming from viruses that weaken your immune system. I’ve had recurring shingles for a few years now and every single month without fail, despite being on antivirals indefinitely, I get a flare up in nerve pain at the outbreak site.

Having said that, this past week I’ve been busy! So busy, that I’ve had to be organised. I notice this organisation has had a positive impact on my mood despite being in luteal. It’s classic distraction I guess. Also my husband and I have a weekend away booked as it was our wedding anniversary this week and just knowing that I have three nights of child free sleep to look forward to, is undeniably liberating.

A few more things happened and one of them was, I saw a new GP. A big deal for me. I’ve had the same GP since before my Fibro diagnosis six years ago, and she’s been amazing. The idea of seeing a new one whilst she is on maternity leave has filled me with dread for months. But today I did it. It was ok. I went in with a list and ticked off all of this in 10 minutes….

  • ECG Booked
  • Fasting bloods booked
  • Referral to rapid cardiac clinic
  • Breast clinic follow up appointment booked
  • Chased up Lipid clinic referral
  • Discussed further gynae/endocrinology input re PMDD
  • Post covid obs done
  • Face to face appointment for Kaiser booked for post covid obs.

Why am I telling you all of this in a blog post?

Well there is a reason, and it’s this weeks confession. I have always been a person that actively advocates for myself and my health. After all if I don’t, who else is going to do it for me? I research everything, I connect dots and I track my symptoms. But for months now, I have been slacking. It took me two months to drum up the courage to get a referral to the breast clinic, even though I had a very visible lump in my left breast. I just couldn’t do it. I couldn’t be bothered to argue the toss with the drs receptionist about why I needed a face to face appointment, and every time I spoke to a healthcare professional that wasn’t part of my mental health team, I cried. 

When you have chronic and mental illness you get used to being dismissed by doctors.

Can’t breathe, crushing chest pain? Probably just a Fibro flare up, I’m sure that’s a symptom! Or actually maybe it’s anxiety, have you been stressed lately?

Skull smashed open and brain hanging out? Sounds like a panic attack.

Gone blind? Sounds like a migraine.

And so on. I know I’m being glib, and I’m sorry if this exaggeration offends anyone, but seriously, sometimes visiting the doctor is like pulling fucking teeth. The issue with that is, the doctor’s the only person who can help you get the treatment you need, for the answers you had to figure out yourself.

And when you have kids it’s not even a case of whether or not you can cope with your symptoms. You don’t get a choice. I know it’s easy for me to say, and many people reading this may well think, well if it was that bad you wouldn’t be able to just cope. The truth is though, parents with their own health issues do just cope. Even the ones diagnosed with life threatening cancers still do the school run between scans and treatments. I personally have friends who have had to do this so I know that it’s true for some.

Big thing number 2.

Group therapy. I started it today. I want to write a whole blog post on the pros and cons once I’ve had a few more sessions so for now I’ll keep it brief. The session was two hours long. Two hours spent with a group in person might have felt quite nice, a chance to learn some new mindfulness skills and have a chat with others in a similar boat to myself, but two hours online was painstakingly long. Kaiser napped for just 15 minutes of it and trying to listen to other women speak over the top of crying baby heads felt strained. There were a few rules too, like we had to keep our camera on at all times so I couldn’t roll my eyes or go for a wee without having to let everyone know my reasons. I want to benefit from the group and I’m sure in time I’ll get used to it and maybe even bring some of my own value to it, but today I found it just made a stressful day with a baby, more stressful. The whole idea of this group is to be able to learn to regulate my emotions better, to deal with stress in a more productive way, and to feel more in control. So I’m going to stick it out, even if the first session did feel like it was an intrusion on my time. Therapy, I’ve learned is not supposed to be comfortable and it requires commitment so I feel I owe to myself to see this through.

Full time job

It has felt lately as though looking after my health and trying to juggle appointments and treatment is a full time job. Having a baby is also a full time job, both without annual leave or pay. I’m due back to work soon and no idea what I’m going to do about childcare or how to manage two full time jobs on top of a part time paid job. I want to be well in order to participate in my children’s lives, but I also need to earn money to be able to give them a decent life. The system is still fucked. It still penalises mothers who work or have partners. Childcare is still extortion, and I know I’m not alone in this plight. I just wish it was one of the ones I didn’t have to think about right now, but I know I do, as with the cost of living rising and wages becoming stagnant, it’s a very real threat to our livelihood and I guess lifestyle too.

Finally

Finally I’ve become more aware this week just how much I’ve let myself go, and I’ve set myself tiny goals of putting my makeup on more often and making sure I’m grooming myself! So far it’s going ok, but they do say it takes at least 3 weeks to form a habit so I’ll catch you up then.

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.

104 days postpartum

It’s funny how days are marked by our worst memories and our great ones, are often lost in mind with no clearly accessible date and time attached to them.

At 5am on the 11th October I woke up, eyes barely even open before I was thrust deep into a panic attack. My body wracked by the sensations, my mind reeling from the racing thoughts. To say I was devastated is an understatement, this is the first acute anxiety attack I’ve had in just under three weeks. Three weeks isn’t very long to most people, but it felt joyous to be able to think clearly for a while without the feeling of dread hanging over me. Without ruminating and catastrophizing. Without the pain in my teeth from my clenched jaw. Without the fatigue that hits you after yet another night of insomnia. Sleep when the baby sleeps… haha, if only.

What I’ve noticed though, in the fifty something days since I last updated my postpartum progress, is how hard I’ve tried to implement grounding techniques. How dedicated I have been to my recovery. I started a new contraception eight weeks ago to try and eliminate my periods, ergo reducing symptoms of PMDD. I’ve been on similar contraceptives in the past for the same reason. In this instance I have bled non stop for eight weeks. I am so run down I have ulcers in my mouth and reoccurring shingles pain, requiring more medication to combat. Around the same time I started the new contraception, I also switched my migraine medication for a slow release version and this has helped immensely with preventing attacks.

My son is now fifteen weeks old, he can hold a toy in his hand, chatter and laugh. but he rarely sleeps. His charming little face is one of the most beautiful I’ve seen, that is when it’s not screwed up like a tomato that’s past it’s safe to eat stage, wrinkly in places and as red as hell.

In the last one hundred and four days I have felt every emotion to ever exist. My days are now spent trying to wrestle a screaming baby into a car seat I’m unable to lift, and reading books about Biff and Chip with the big kid. I don’t get any opportunity to rest, which is hard when you have an illness that requires it. I’m mortified to admit some weeks it takes me three attempts before I manage a shower, and even then it’s hurried.

I guess what I’m trying to say is, I find it much easier to remember all of the hard bits, the downs, the panic and the tears and I’m very good at choosing to ignore the successes. Deeming them unworthy in their minutiae. Such as; getting the baby down for a nap on the first attempt. Watching his sister cuddle up to him or gently bounce him in his bouncer with her foot, whilst idly watching yet another episode of Bluey. The beauty in the pumpkin patch photoshoot we’d had recently, a windy autumn day surrounded by orange and forest green, the memory of the rain pelting down on our clothes afterwards, and rushing home to drink hot chocolate.

Watching my son grow, though hard, has not been wholly clouded by my poor health. It’s been beautiful in so many ways, and I’ve enjoyed very much time spent with him. I can feel my confidence as a mother returning somewhat. I have my first night out coming up and I’m anxious. When my daughter was a baby I couldn’t wait to get out, feeling more than ever that I needed to let off steam. Now the only steam I’m interested in, is the steam coming from a freshly boiled kettle and the piping hot tea that comes after the boil.

My pelvis hasn’t healed, I am still struggling with walking as with any physical activity. Unfortunately, it does seem this is likely to be yet another long term problem, but we knew that was a possibility.

I use the word progress to explain how far I’ve come and it’s the reason I’m utterly disappointed when I come up against relapses like that earlier panic attack. Im devastated when Im unable to rationalise my intrusive thoughts. Yet in spite of relapses, hard days, long nights and tragically cold cups of PG tips, I’m grateful. Grateful for the support I’ve received from an amazing perinatal mental health team, from my family, and from those few close friends who selflessly and with conviction, care enough to remind me I’m doing ok.

They say it takes a village to raise a child, and there are many people whom have contributed to my progress. Thank you. And here’s hoping for another 100 days of progress to follow.

54 Days postpartum

23.08.21

My daughter was on her way to bed last night when out of nowhere panic hit me full force. My son, lying in the crook of my arm, suddenly started to spit milk out from the sides of his slow flow teat, and I realised, the hand that was holding his bottle was shaking. I felt hot, from the feet up, like a flush, my brain scrambling for grounding thoughts that just couldn’t make their way to the forefront of my mind. It’s coming I thought, knowingly.

My husband comes when I call, and holds me tight. Our son, bewildered at why he’s suddenly had his bottle snatched from his mouth, our daughter, obliviously cleaning her teeth in the bathroom above our heads. Breathe Shaun tells me. Why am I like this???? I sob, trying to catch my breath. You’re not like anything, Steph. It’s a panic attack and it will pass. He reassures me, never letting me go.

It’s been 54 days since I gave birth. Our son will be 8 weeks old on Thursday 26th August.

This isn’t a birth story, because my birth story is too long, the trauma that surrounds my pregnancy will not shrink into an Instagram caption or a rushed blog post. This is a progress report.

When my son Kaiser was born, and during the days preceding, I was in a constant state of panic. I would have moments of calm, but they were fleeting and hard to grab onto. I’ve plateaued at a panic attack approximately once a week now. I know that a large part of their occurrence is directly linked to hormone sensitivity, yet that gives me no control or reassurance regarding their assault on my life.

I’m currently under the care of the most amazing perinatal mental health team, they are some of the best medical professionals I have ever come across in my entire life and I’ve met a few. Sadly this support was massively lacking during my pregnancy – but that is a story I’ve semi already told and one that would take up the duration of the rest of this blog. The point, is that I have some amazing people in my life at the moment helping me heal from acute anxiety, intrusive thoughts and various states of panic. I genuinely don’t believe without their consistent support during the postpartum period, that I would have gotten these bastard attacks down to once a week on my own.

The trouble is, I’m still very much in a state of fight or flight. During the periods of calm, I am logical. In fact I am probably calmer than I’ve ever been in my life and generally laid back (a term probably not often used to describe me as a person) but I can’t stay there, because as quick as I’m calm, a storm cloud opens up the heavens on my head and I am ready to flee the country as though I’m being chased by a hungry tiger.

However, during those moments of calm I have reflected. I have corrected, and I have made changes to my mindset. Living with chronic illnesses as I do, migraine, fibromyalgia, PMDD etc it’s easy to become all consumed by pain and suffering. The shift in my mindset has been that I don’t want to be consumed by this suffering anymore. I know I am going to suffer, bad days, sometimes bad weeks and maybe even bad months, but I don’t want it to consume me. I want change.

My community nurse said to me this week you have to do different to feel different and so I’m doing different. Every day I’m fighting tiny fires of fear. For example, I’m frightened of being alone with my kids in case I have a panic attack, but I’m staying alone with them anyway, because I know if I avoid this fear it will only grow.

I was absolutely distraught about Shaun returning to work after paternity leave, but I knew if he delayed that process I would be as scared, if not more so, when he eventually did.

I’ve been avoiding books and television that might be triggering or that contain storylines of anyone with mental illness, but very slowly I’m reintroducing those things into my life.

I’ve been too afraid to walk or drive anywhere on my own because of how much pain I’m in. What if I get stuck with the kids? And then what if whilst I’m stuck, I panic?

I’ve been too scared to enjoy days out for fear of repercussions on my body, or to go places more than half an hour away from my house in case I panic and need to flee, but slowly I am doing both.

I’m making this sound easy, and yet it’s been the hardest most hellish experience ever, doing things I’m so desperate to avoid goes against the grain. But I’m using these examples to measure my progress, because it’s so easy to feel as though I’m making absolutely no progress at all when anxiety strikes.

I want change. I want my life back. And I have to do different to feel different. I have to be open to the idea there are positive outcomes in life, because if I don’t open myself up to this possibility, I will forever be living half a life.

35 weeks of growing you

It was going much better until your dad and I went out the weekend and it threw me into a flare up. Again. We were only out for 2 hours.

So whilst Saturday was a good day Sunday was not.

You know that sleep is evading me, I know you know, because you’re awake with me – it’s not unusual for that to happen this late in pregnancy, some might even argue it’s par for the course and being tired now is some kind of subconscious way of prepping me for your arrival. Maybe, except it’s now making me really unwell again. I’m getting about 2 hours broken sleep a night. I’m having flare ups of fibromyalgia symptoms that I can’t treat. I’ve started getting the skin crawling sensation again, from head to foot – it lasts hours, sometimes days. I have been desperate for cold showers at 4am and I’m scratching so much my skin is bleeding and marked.
I’m also feeling rage viscerally, like I could actually start caving your dad’s head in if his foot touches mine in the middle of the night, because the slightest touch sets my whole body off with paresthesia.
Itching, numbness and tingling are common symptoms of fibromyalgia, except that usually they would be treated with heavy duty drugs. They’re also not uncommon symptoms of pregnancy, but you can’t take heavy duty anything, when you’re up the duff.
I phoned maternity Sunday who wanted to see me urgently to rule out intrehapatic cholestasis…. so we did the 80 minute round trip to the hospital again to wait and see if you have to come out even earlier than your planned early delivery.
The sun is not a helpful addition for me at the moment. It’s making my symptoms worse. It’s nice for my mood, but as much as I’d like that to be enough, as much as someone might tell me it’s enough, feeling better mentally doesn’t provide a cure for a physical problem.

Next week we find out hopefully how you’ll be making your entrance. I’m excited and plagued with anxiety at the same time. We know we have to stay in hospital for a couple of days minimum, and that’s bothering me because now we have your sister, your dad won’t be able to be with me every second. I don’t feel confident about doing any of this alone. I’m frightened now that things have taken another turn and that’s how quickly it happens. One minute we’re loving life and trying to move forward with positivity and the next it all comes crashing down in an instant. I have hope that if it can change this quickly, the positives can also come as quick and we can be pleasantly surprised too.

I’ve been solely focused on you and the few people that have been present on this hellish journey with us. Whilst trying hard to give less thought to the people who haven’t shown an interest. I don’t blame people for not wanting to jump into our hell, I know they have their own. But recently, I really have needed to remind myself that everyone has their own shit going on and I shouldn’t take it personally. I am mindful of this and I am giving people the benefit of the doubt, and accepting my journey isn’t someone else’s to bear, but sometimes I find that it still stings and I get hung on up on thinking about it. It’s still hurtful that people I consider close friends, people who I’ve involved in all big life events like your sister’s christening and our wedding have just stopped bothering. I know as a 33 year old woman, mother and person who can be totally overwhelmed with her own life, how hard it is to sometimes connect with people, so I am conscious of this, and the older I get the better I am at empathising with other people’s struggles. Occasionally though, I still, rightly or wrongly, feel their absence like rejection. I’m human at the end of the day, and maybe too honest about this stuff. When you grow up, you’ll go through all sorts of life trials and hurdles, but you never really stop needing people in your corner. Luckily for me I have my mum and your dad always. And luckily for you, you’ll have all of us.

Things are easier now restrictions have eased and people are helping us keep your sister busy again. She is happiest when she is busy and that has taken some of the pressure off your dad, which makes me feel less like a burden on him. I worry sometimes if one day he will wake up and feel like we’re a full time job, but he’s a good man, I hope you’ll end up just like him.

I’m not ready for your arrival if I’m being honest. People keep asking me if I’m ready but I’m not really, because it still feels like there’s so much we don’t know. Is anyone ever really ready though? I do know it will all fall into place when you’re here as life often has a way of working out.

Can’t wait to finally announce your name either! See you soon little chief. 💚

31 Weeks of growing you.

I’m tired. Tired of explaining why things are so hard. Tired of feeling stuck on a loop. Tired of the unknown. Tired of my body failing us. Tired of pain. I’m just so fucking tired.

I’m irritable, I’m fed up of people saying stupid shit to me, shit they don’t of course even know, is stupid – because how can anyone be expected to know what the right thing to say is, when I don’t even know? I’m just tired of all of it. I’m tired of feeling like I have to fight to have questions answered. I’m tired of having my situation dismissed or compared to that of so many others. I’m tired of feeling like I’m broken.

I have maintained the pretence that I’m not depressed throughout this pregnancy, because I don’t want to take more medication, it’s the first thing anyone says when I complain of low mood. Do you need to go back on your antidepressants? – and I feel like saying, please fuck off.

Because I know what depression feels like, and whilst I do feel very low many days, I also have a list of reasons as long as my arm as to why that is and a pill, unless it’s one that reignites my ability to walk, or makes me promises of a healthy baby isn’t going to change that at the moment.

So far I still feel like I have some grip on my mood and reality. However low I feel, I don’t feel like I’m fully depressed yet, but maybe I am and I’m in denial, who knows. I have gotten this far though and I can see it through until you’re born. We will then reassess my mental capacity, once we have a better understanding of my physical abilities.

I also feel like I’m becoming a social outcast – I can maintain a level of strength and resilience as long as I don’t have to talk to anyone. When I speak to people I feel like I either have to explain all the whys and what ifs or I have to appear strong and excited, whilst really feeling neither.

Feeling like I can’t hide myself wincing in pain, like I can’t hide the fact that I am in uncontrollable pain, every single day. Even before you existed I had to navigate a social life around pain and bad days, now I’m starting to feel as though I am incapable of a social life at all, where are the good days? Good hours pass by too quickly only to be met by flare ups of more uncontrollable pain. Most of my friends are amazing, they want to help and include me, they care, they check in, but I still feel like I am bringing the vibe down at every conversation. Like I’m just that person that people would rather avoid. I know I’m probably overthinking it, as you’ll learn, I do this a lot. It’s a work in progress.

We haven’t got long left – so it is exciting in lots of ways, but fear overrides. I don’t know what to expect this time despite having done this before. When I was pregnant with your sister the excitement was more pronounced because the outcome was completely unknown. This time the worry overtakes the excitement because we know how bad it can get. A pessimistic view I know, but in my head it’s also a realistic one. It’s a self preservation tactic, if I expect the worst I’ll be happy when better happens.

I’ve learned some things about you recently that do make me smile. Things like you hate me lying on my right side even though it’s the one I find most comfortable. You kick and kick and kick until I turn back. You don’t like loud noises. Your sister dropped a dumbbell the other day and you jumped with such force I thought you would jump right out of my body. You’re not bothered about baths even though everyone says babies go crazy in the water, neither you or your sister did. You protest after I indulge in too much sugar and you push back now when any one of us prod my bump.

I nearly didn’t write this, this week. It’s maternal mental health awareness week and my feeds are full of recovery stories, whilst I don’t feel like we are any closer to recovery. I know I will recover mentally, because I’ve been in much darker places than this before, but will I ever recover physically? Trauma, whether to the body or the mind comes with very real physical implications that filter into the everyday.

Mourning your old life is a daily battle when it comes to chronic illness and it’s why I find words of optimism so hollow, however well intended.

Still we move through the days, bringing us closer to you, and we hope that one day in the not so distant future these down days will be memories easily forgotten and better ones will replace them.

You could be here in a matter of weeks and I know I have to be strong for you, so I’ll keep fighting.

Baby Cullen number 2. Can’t wait to meet you. ❤️

To my friends (and family) who don’t have fibromyalgia.

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

Third trimester

You made it.

You’re on the homestretch now.

Is the baby ok…..?

When I was pregnant with my daughter I had chronic migraine from the minute I found out I was expecting. I was diagnosed with SPD at 16 weeks unable to walk and that was extremely painful. I soon became very depressed and ridden with anxiety and intrusive thoughts. By the third trimester I was bedridden and had developed preeclampsia. We were induced later, she was born in withdrawal from antidepressant medication. Her first year was defined by trauma and towards the end when she was recovering, I was being diagnosed with fibromyalgia. As she grows, and continues to thrive I feel like with each flare up I die a little inside.

You’re so strong.

Lot’s of people go through complications and come out of it okay.

Stay positive.

It’s a myth (I believe) that people come away from pregnancy and birth trauma ‘ok’ we all move through trauma very differently, but what your mind is able to process your body fights against and you don’t always fully recover. Trauma and stress have a lasting impact on the physical health of a person.

This week I turned 28 weeks pregnant. Last week I found out I didn’t have gestational diabetes and I cried tears of joy, because I didn’t think I would cope with more complications. But every glimmer of hope is followed by a plummet, a sense of doom. Here we are today and my diagnosis and risk catalogue, continue to grow and the list of complications multiply again. I’ve again suffered migraine from conception, got diagnosed with SPD at 16 weeks, again. My blood pressure has been high. I’ve had a reoccurring shingles infection that isn’t responding well to treatment. My whole body is in a constant flare, I’m in agony, not just occasionally now, all of the time, surviving on the very minimum of pain relief. Some days I can’t move my body at all. This week I turned up for a growth scan only to be told I have a low lying placenta (placenta praevia) they’ll book another scan for 36 weeks but and I quote, ‘if you make it to 36 weeks.’

Don’t have sex – I can’t even move my legs hun let alone spread them.

Don’t do…. (insert anything) here.

You might need a cesarian.

No big deal right? Women have c-sections all of the time. Except it is a big deal for me because my body is already broken and major surgery only hinders it’s recovery further.

But the baby is ok, right?

My baby, the one I’ve been fighting for. My second baby, is currently safely cocooned inside me. But We don’t know if he’s ok, not really. I find it odd that this is the first question people ask when so many babies suffer complications late in pregnancy and post delivery. I also feel like it unintentionally goes towards invalidating my struggle. The baby’s fine so therefore you’re fine, stop moaning. We know he has a 1 in 3 chance of suffering the withdrawal similar to his sister, albeit to different medication. We know he’s at risk of infection because my body isn’t fighting them off well. We know that he is at risk of being born prematurely. We hope that he will come out of this unscathed. I am doing everything I can to ensure that happens, but I am not in control of this situation. So I can’t answer the question with anymore certainty than my doctor can answer me.

As a family we are doing our very best to survive, and surpass the finish line, in one piece. We are trying to stay focused on the outcome of a healthy baby, but we are definitely not okay.

My daughter who can’t wait to meet her brother has no understanding of why her mum is ruining all her fun by not participating in anything. My husband is now my carer, and he’s not getting paid, not even in kind.

I am thirty three years old and I feel like my world has been tipped on its head for the 100th time in my life, except this time I have no control, no way to turn it around. I don’t feel brave or strong. I feel petrified. I feel weak. I feel out of control and I feel bone weary, exhausted! As though cement has been poured into my body by mistake and set overnight.

I don’t like the idea that we must keep calm and carry on, because I don’t feel calm. I’m carrying on regardless, because I have no choice. Not because I’m not broken. Or because I’m coping better than I make out. It’s because carrying on is the only option. There’s a saying that goes, you don’t know how strong you are until strong is your only option.

I hope once our baby arrives we will look back on this time like we look back on that time with his sister and we will be okay. We will have all survived, together. We will be happy, and we will have reasons to laugh. I hope that I will regain some control over my health and days will look brighter again. Hope is my coping mechanism. I hope, because to give that up isn’t an option. You might be wondering why I continue to share all of this information, why I’m not holding out to share better news, and the answer isn’t a simple one either. I write to hear myself think. I write to process my thoughts, and to unburden myself of the doors negative thoughts lock when trapped inside my head.

I’m not a person who believes her suffering trumps someone else’s. I know other people have it worse. I know I may come away from this beating the odds and better, but I don’t share for your attention or your sympathy. I share for my own peace of mind. I share so that when we come out the other side, we can look back and know we survived.

27 weeks of growing you.

It’s been a long one, one full of apprehension, appointments, medication, embarrassment, but smiles too.

Last week I had a recurring shingles infection outbreak, it meant I had to go back on antiviral medication and it was painful. During this time we had to see a midwife for a routine appointment and because I can no longer attend these appointments on my own, your dad drove me and got to hear your heartbeat live, for the first time. That was smile number one.

On Thursday I attended the hospital again for some blood tests, and also had a GTT or glucose tolerance test as they are known, to check for gestational diabetes. I have been dreading this test. I had one with your sister too, though I have diabetes in my family, I wasn’t considered high risk during my first pregnancy. This time though due to BMI and hypertension, I was convinced gestational diabetes was a given. The test was painless but it’s effects on my body, fasting, blood taken on an empty stomach with only pain killers rattling round in there made me sick. The drive was uncomfortable, the wait in between the same. I felt like dog shit. The twenty four hours that followed scared me. It was your sister’s birthday party the weekend following the test, and I was panicky about not being able to indulge in birthday cake. Thankfully though, I found out on the morning I DIDN’T have gestational diabetes, my relief was tangible, I cried real tears. Finally a sliver of hope amongst what has otherwise been an assault on my body.

Friday morning I took my recently hired mobility scooter for a spin. It pains me to say that this was difficult. It shouldn’t have been, but deep rooted in my psyche is inherent ableism. I didn’t get questioning looks, but I did get a lot of sympathetic smiles, which in truth were almost as uncomfortable as the former would of been. However, with that in mind, I enjoyed a morning out with our family, and that inspired smile number two.

Saturday arrived and your sister was buzzing for her birthday party, we’re still under strict restrictions here so she was only allowed one friend, but it was her bestie, Maddie. It was wonderful, your nanny, daddy & I all dressed up in fancy dress and I painted your sister and Maddie’s faces. Using the crutches has become increasingly difficult and painful for me, making my fibromyalgia scream, so after a few hours I was beat. But smile number 3 was the best, seeing your sister’s happy face and feeling like under the circumstances I had given her the best possible birthday party, was a moment to cherish and be proud of. I couldn’t sleep last night because the pain following has been so unbearable and today your Daddy took your sister out for the day so I could get some rest. The pain of carrying you on top of my illness is becoming harder to control the more you grow. The hardest part of all this is the limitations on the medication that is safe for me to take whilst carrying you. I worry how I will care for you when you arrive.

In under two weeks time we have another scan to check your growth and also to discuss how you might enter the world. I think I’d like to have a planned induction this time if it’s possible for me to avoid cesarian. Your sister was induced and it definitely wasn’t easy but in comparison to pregnancy, labour isn’t something that scares me.

Tomorrow is your sister’s fifth birthday and we will celebrate again despite the pain I’m in, because us mums push through for our kids, but I know I’ll need time to recover again afterwards. I have an occupational therapist visiting next week to see if I am suitable for some more adaptations to help me see out the rest of this pregnancy with limited mobility.

I am staying strong, and so are you. Keep it up. We’re doing okay you and me.

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

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

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

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

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

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

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

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

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

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

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

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

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