Confessions Of A Chronically Ill Mum #18

It’s been a while since I’ve written an insert of COACIM. I’ve been busy, trying to keep PMDD under control alongside parenting a riot of a toddler, a somewhat sulky six year old…. Summer holidays and work. So I guess you could say I’ve been ‘doing life.’ For the most part doing life has been good, the summer has been busy and full of adventure. The downside being, I’m still not (and never will be) able to do everything I want to do because of my health, both physical and mental. The limitations it has on my overall well-being might have lessened somewhat but is still profound. However, I’m so grateful, now more than ever for all of the things I can do!!

Since starting HRT I’ve noticed an increase in energy and my ability to move more freely. My joint functionality and all over flare up time is less than it was before commencing hormone replacement. PMDD episodes are shorter too (though not necessarily less intense) I won’t go into too much detail about that now, because there’ll be a separate HRT update shortly. For now, there’s so much else I want to say.

Emotionally, I’m riding the waves while trying to savour every moment we get to enjoy as a family.

My confession this week, is that I’ve realised, in recent months since adding in a few evening plans, just how much I miss dancing. I’ve had two occasions where I’ve been out and there’s been music. The first one was with Shaun, we went to Cardiff to watch The Libertines. They are one of our mutual music loves and it was a long anticipated gig. Thankfully the venue sorted us out with accessible seating and this was in an area with enough room to dance if you wanted to. Though I soon realised, I can’t. I can no longer move freely without pain. Even the ‘dancing’ I can manage, such as waving my arms in the air, causes me pain. While I may be able to walk a little further than I could before (and this is great) I still cannot remain standing for more than a few minutes, and sadly, I definitely can’t dance, at all really! When I realised this I became quite upset. Because let’s be real there’s nothing quite like being able to dance it out. (Fans of Greys anatomy will appreciate the reference) Like I said, I am trying to focus on what I can do as opposed to what I can’t, but it still irks and hurts and leaves an adverse feeling in the pit of my stomach.

The second music shindig I attended was Meatloaf inspired musical Bat Out Of Hell. The show was phenomenal, but again I couldn’t move much. As with standing, I find being seated for long periods really uncomfortable too. Driving is agony and I’m only really comfortable when I’m slowly walking or led down. This can put a real spanner in the social life of a music lover. Yesterday I spent hours nostalgically reminiscent of the bank holiday weekends I’d spend at all day music concerts and outdoor day festivals. Some of this nostalgia was not just mobility related though. I’ve been struggling with the kids in general over the last few days. As the end of my cycle closes in the misophonia creeps out and my tolerance levels reduce to almost zero. I’m snappy and so fatigued I can barely keep my eyes open. Meanwhile, both of my children are charging around like bulls in proverbial china shops, shouting at the top of their small-but-mighty lungs!

Parenting is hard. You don’t need a blog post to tell you that. What I will tell you is that it feels twice as hard when you’re operating on no sleep, struggling to move, and your brain is prisoner to the fluctuations of your own bodily hormones. I don’t want to muddy the waters because we really have had a lush summer. We’ve crammed in a lot and near crippled ourselves financially (and that was on a tight budget) but there are so many memories from this time we’ll keep. No matter how nice it’s been though, I know I’m not the only mum who can’t wait for routine and early nights to resume.

Another confession is that I’ve been feeling uneasy about using my disabled badge and sunflower lanyard. When attending The Libertines gig I had access to the disabled toilets so that I didn’t need to queue in long wait times for the loo. This was necessary because as mentioned - standing for long periods causes me a lot of pain! Despite the necessity I still felt as though I was being judged. Groups of men kept trying to get into the disabled toilets after me and even said the dreaded words ‘There’s nothing wrong with you’ to my face. It’s a confrontation that I just don’t want to be having whilst I’m more than capable of telling them to fuck off and stating my rights as a disabled person, I don’t want to. I instead want to be able to enjoy my night out with ease and not fear the need to defend myself against other people’s ignorance. 

Please remember that not all disabilities are visible. Not everyone whom is disabled will appear to be, and with risk of sounding really glum here, it could be you one day. None of us are immune to ill health and injury. You don’t even have to be kind if it really pains you to do so, you just have to mind your own business.

Confessions of a chronically ill mum #9

Still horizontal. My pelvis has not improved. I still can’t drive and I still can’t get up and move around freely. What I have noticed though is how different my mindset has been this time being so disabled. I feel less…. Devastated. As if by some miracle I’m accepting the things that aren’t within my control and I’m just cracking on, regardless. I mean, let’s not pretend I’m not frustrated or upset at what I’m missing, the stress it causes and the worry being immobile brings, because of course, I am. But I’m not obsessing, ruminating, catastrophising or all of that other shit I’m so prone to doing when I can’t live the way I’d like. Maybe it’s therapy that has taught me to be more accepting, or maybe it’s the state of the world and my gratitude at having the life I do, even whilst it’s hard. Maybe it’s the spring weather. Maybe it’s because I’ve been bleeding for weeks and when I’m bleeding I’m at my best mentally. Maybe it’s just because luteal hasn’t punched me in the brain yet! Who knows, who cares, I’ll take this more ‘normal’ reaction to the situation and just be thankful for it.

What else is going on?

BIG NEWS. I’m fundraising for iapmd in April. The International Association for Premenstrual Disorders. I’ll be running a raffle and an auction and you can find details of both by visiting my Instagram page and tapping on PMDD raffle highlights. I’ve been blown away by the generosity from people donating prizes, especially in the current climate. Thank you from the bottom of my heart!

But I’ll confess, I’ve also felt a bit disheartened that the buzz on my social media pages has dropped significantly since I started posting about the charity. I do understand that awareness posts will not land or resonate with everyone but it can be a bit of a kick in the guts when your friends don’t get on board to back you. The thing with socials is they are unfortunately slave to the algorithm and if people aren’t liking your posts, people aren’t seeing them, either. So remember even if you’re unable to donate, buy tickets or relate to the cause, a simple like or a share can make just as much difference and may reach people that are able to help. I also need to confess that whilst I’m coping better being so immobile I haven’t coped well with the atrocity that is our GP system. In fact I’ve coped so badly with it I lost my shit both with a receptionist and a pharmacist recently. And whilst I do believe both of them were antagonistic I still feel like my rage is sometimes something I have less control over. Firstly the physio I was referred to last October called me to say he’d never sent my referral to the hospital… he was apologetic and I thanked him for taking accountability, but I’ve been left without any physiotherapy for six months so some might argue it’s no wonder my mobility is worsening again. Anyway, then I requested medication and was told I’d have to wait 3 weeks to speak to a doctor to okay the meds. 3 weeks. They are psychiatric meds and I could of been on top of Clifton suspension bridge long before I got them. I’m not suicidal, but if I was in crisis this notion that we must just grin and bear it is, in my opinion not acceptable. The mental health crisis has long been a pandemic and with GP’s refusing to see people face to face the consequences are real for many. I feel both situations could have saved me a lot of stress and pain had I just been able to talk to a doctor there and then. 

Because of my limited mobility, I have been finding staying on track with the healthy eating harder, but I’m determined in whatever way I can to continue this journey of better nutrition. Though there have been days I’ve succumbed to a few treats, overall I’m still managing to reduce my portion intake and include more fruit and veg.

It’s Ciara’s birthday party next weekend and I’m really hoping I’m able to move better for that. However I know whatever happens she will have the best day. With the help of our families and support of all of her friends we’ll make sure it’s a good one. She’s such a beautiful, kind and sensitive soul, my daughter! She asked for a party this year INSTEAD of presents. What kind of amazing little kid offers to forfeit presents to spend the day with her friends. I mean it’s a good job she did because the party has cost an absolute fortune but we’ve still got her some gifts to open on the big day! She also lost another tooth, her third one, whilst her brother is just cutting his third. Speaking of Kaiser he now knows and responds to his name, nose, and Raa Raa (the noisy little lion) or Thomas (The tank engine) He still never sleeps though.

I guess for now that’s about all that’s new. I’m busy trying to manage my health before I’m due to go back to work in May, and I’m also soon to be discharged from the perinatal service so I just need to get my head around that. Bear with, and watch this space!

Love. Xxx

Confessions of a chronically ill mum #8

That chronic illness life is the gift that keeps on giving. Lots of things happening over here at DivamumHQ! Big and small changes being made and as ever, 100’s of appointments.

I started this week proud and feeling relatively ‘good’ I’ll tell you about it….

So you know I said last week that the cardiologist explained I’m showing signs of heart disease? Yeah well that’s still a thing, but I’d also had loads of blood tests taken in Jan and many of them came back abnormal. One of them, was my plasma viscosity or ‘inflammation in the blood’ I found this, like all of the others, stressful to take in. I have fibromyalgia as you know, and usually Fibro doesn’t show elevated inflammatory markers and so I couldn’t really understand what had changed. With the blood glucose also being high and everything else with my heart, it was a worry. The GP I spoke to suggested doing a repeat blood test once I’d got going with my healthy lifestyle changes. Now we all know, I don’t walk very good, and I think I’ve also mentioned I’m overweight. Well, since these findings I’ve been trying really hard to be healthier. Not so much even to lose weight, but put a little effort in to eat right (healthy), reduce portions, try and move more. Anyway I’ve managed to lose 9lbs now, and I had the repeat blood test this week and guess what my plasma viscosity is back within normal range! I’m so so so pleased, I honestly can’t even begin to tell you how rewarding it is to see tangible evidence that the work I’m putting in may well really improve my health. Of course there’s lots that can’t be done and in terms of heart disease, if I have that, it can’t be reversed BUT I can still prevent serious complications by sticking with healthy choices.

I’ve also been attending a group focused on diabetes prevention. It’s a national programme run by the NHS that has an 80% success rate. I’d gotten to a point where doing it on my own was only adding to my stress and stress itself is a factor that can increase your likelihood of developing type 2 diabetes. I’ve only had two course meetings so far but already I’m starting to understand my food intake better and the things that are within my control to be able to change. If you are reading this and considering the course, I would highly recommend it.

So that was all great… yeah? Yeah…. Until…. I went to my mum’s Thursday and when I came home and sat down, I couldn’t get back up. My pelvis has gone again. The trouble with this is, I don’t know why or how, so that means I also don’t know when or if my mobility will return to as it was. I can tell you, being immobile with a crawling baby is frightening & quite dangerous to be honest. It’s upset me because during pregnancy I was told often that my mobility would be limited postnatally, but it did improve and that gave me hope.
So now it’s poor again, it’s scary!
My health is forever fluctuating, I am learning to be more accepting and appreciative of my limitations, but it’s far from easy and acceptance isn’t linear. Some days I’m able to find gratitude in the smaller things, able to accept the things I cannot change, and others, I despair.

Confession: When my pelvis went I questioned if this was it. Is this when my body gives up? Will I walk again. Will I walk with aids again, maybe forever? 

But that aside, I have had a few positive take aways from this week, and I’ve included them below in an Instagram post I wrote this weekend.

I’m only four weeks away from the group therapy I’ve been involved in coming to an end. I really can’t describe in words how educational, enlightening and empowering attending the group has been. I want to do a whole blog post on group therapy, so I’ll save the ins and outs. One of the things we have been working on though, is radical acceptance. If you’ve not heard of this check out the link, as someone who lives with both physical and psychological illnesses that are not curable, this has been a really useful tool in my arsenal.

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.

Life after secondary Symphis Pubis Dysfunction.

For those of you that follow my blog you’ll know that for the last 7 months I’ve been using crutches and a mobility scooter because for the second time in my lifetime I developed Symphis Pubis Dysfunction during pregnancy, rendering me unable to walk unaided.

Symphysis pubis dysfunction (SPD) is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain in the legs, hips lower back and groin area, possibly because of a misalignment of the pelvis. Most commonly associated with pregnancy and childbirth, it is diagnosed in approximately 1 in 300 pregnancies, although some estimates of incidence are as high as 1 in 50.

After the birth of my first child my mobility returned almost instantly requiring no further treatment and little associated pain. Professionals tend to believe SPD worsens with each pregnancy and the likelihood of developing it in subsequent pregnancies is extremely high. Many women experience pelvic pain in pregnancy and the severity of SPD varies from person to person, loss of mobility and need for walking aids is generally rare. It’s onset usually occurs in the latter part of pregnancy in the second and third trimesters. For me, I had developed symptoms during both pregnancies, at the end of the first trimester and required crutches by sixteen weeks. In my first pregnancy I needed to use a wheelchair at around 25 weeks and in my second this was sooner, at around 20 weeks. Highlighting to me the very real and tragic reality that society isn’t accessible.

Since giving birth four weeks ago the question on everybody’s lips is ‘can you walk again now?’ And the answer is yes, I am able to walk unaided now, but my symptoms have NOT disappeared, far from it.

I’ve lost a lot of weight in a short space of time and I believe this to have provided significant relief on the pelvic joint, thus I am able to walk a thousand(ish) steps at present, but it’s not without pain. I’m currently unable to walk around holding my son and rocking him and swaying in a standing position is agonising. Same goes for carrying anything, including the car seat, along with bending and sitting for prolonged periods. I spent almost 4 of those 7 months pretty much horizontal in my bed and so getting used to different positions causes increased aches and pains.

I’m so relieved to have some mobility back at all though, as it was suggested I may need crutches postpartum and that would have made life with a newborn and an older child even more challenging. After the first two weeks following birth I started trying to go for walks everyday with my mum or husband. Short walks that lasted around thirty ish minutes, however this seems to have aggravated pain and I’ve had to reduce the amount of exercise again and pace myself. I’m still trying hard to keep moving I just need to be mindful not to overdo it. Some of you will know I also have fibromyalgia and so pacing is important for me anyway.

During pregnancy I was unable to see a physio, constantly being fobbed off with covid being a reason for not treating in person my very real and very debilitating pain. However I do plan to chase them again as soon as I’ve had my postnatal check.

It’s definitely not easy having a newborn and limited mobility, but I’m humble in that I’m able to move around at all after so long without any freedom. I feel positive that with the right strengthening exercises I can increase the time and distance I’m able to walk but whether I’ll ever be able to move like my prenatal self is still an enigma. I’m desperate to get back to the woods and explore with my daughter, but I know uneven ground is a no no at the moment. I’m also not able to carry my son in a sling. The great thing about buggies is they provide a stand in crutch, giving added support, but it’s really important to remember to do simple things like bend your knees when lifting and stretch often etc.

I’m used to being in pain everyday and whilst it’s not fair or fun I do feel extremely grateful. Losing my mobility to the extent I did in my second pregnancy has really made me value my abilities so much more than I ever did before. It’s also opened my eyes to how other disabled people manage (or not) in a world that isn’t designed for us, even things like high stools in restaurants and benches without backs can cause excruciating pain!! Crutches were a constant trigger for flare ups of fibro symptoms, causing fatigue from too much effort lugging about a baby bump on your arms, being unable to participate in days out with my family was soul crushing, and whilst I’m a long way from climbing round soft play or going for a run I’m closer than I was just weeks ago.

My advice to pregnant women experiencing pelvic pain is to act fast, don’t ignore it, keep moving but don’t do anything that hurts and if that means walking, try to exercise seated or led down. Learn to pace and rest often. Take the weight off of the pelvic joint whenever possible. Goes without saying but don’t do any heavy lifting either. DEMAND to speak to a women’s health physio and look up your own safe exercises for pelvic pain in pregnancy. Weightless exercises like swimming are recommended but be careful of over doing it with the legs.

Something I didn’t do but would also recommend, is try and keep within a healthy weight, it’s nearly impossible when you can’t move around but the extra weight causes more strain on those joints.

Life after SPD isn’t the same as life before but it’s better than life in the peak of it. The world needs more awareness about the impact pregnancy can have on our health and information about how to lessen that impact going forward.

34 weeks of growing you

Well what can I say, the change in me has been so good this week. Though it’s not remained plain sailing on the medical front. Last week I was called several times by the consultant and I felt reassured re the likelihood of a cesarian. Because of my fibromyalgia I don’t recover well from, well anything, and the idea of having major surgery, needing more rest and recovery time without the opportunity to get into rehab for my pelvis, really scares me. The reason being is, at the moment I cannot walk without crutches, and how the hell do I care for you on crutches after major surgery? However these concerns were countered by the consultant who reminded me it was after I had your sister via vaginal IOL that I was diagnosed with fibromyalgia, so recovery for either isn’t likely to be great. Whilst this sounds ominous, it’s reassured me that neither is likely to be worse than the other, for me anyway. I will chat to them again on Wednesday to discuss where we go from here.

The reason I’ve been somewhat pissed off with them again this week, is after complaining about the lack of contact from my midwife I spoke to someone else who was really helpful and arranged a new referral to a physiotherapist- only for my original midwife to phone me on Friday to tell me I couldn’t have physio at the hospital because I’m an out of area patient, they’ve known this since the minute I found out I was pregnant, and I’ve been begging for physio since 16 weeks and was told over and over that I couldn’t be seen face to face because of the pandemic. I was given a glimmer of hope at being seen face to face finally at 34 weeks, only to now be told no, again! It’s frustrating, and I feel like the system in place doesn’t work for pregnant women in physical pain.

Irrespective of the setbacks I do feel more positive in general. As seems to be standard recently, your sister is boosting my mood every single day, making life feel more manageable. I’m still in pain, I’m still without my independence, but I’m not without my family and they, you, are all that matters. Your dad, your sister and I, all went away the weekend and it was amazing. The weather was abysmal, and we spent much of it in the caravan but the change in scenery, the togetherness, was so uplifting it was worth all the exhaustion that is now befalling me upon return. Despite the aftermath I’m so glad that I made the effort. Your sister rode a donkey for the first time, talked about you lots, and before we left for our trip on Friday she even drew on my bump writing baby Cullen I love you xxx

I feel stronger and less weighted by what everyone else might be thinking. Less embarrassed to admit what I need. Less guilty about how I’ve been feeling, more accepting of myself, my limitations and prognosis. We know our journey is tough, we also know some people have it a lot tougher. We know it’s worth it and we know we’ll face whatever challenges come our way together. It’s a startling shift that has taken so long to come I wonder why and how I’ve not been able to pull myself out of the fog sooner – but who cares? I’m here now and I’m thinking more clearly. I’m trusting myself and my ability to get through this, and I’m doing it for you, for us, all of us.

You will be here, before we know it, so soon and we are excited to meet you. Apprehension still resides, and there’s still uncertainty, but I’m trying to focus on the things within my control. Soon we’ll be taking trips as a family of four and we’ll be together, for those days, I cannot wait.

33 weeks of growing you

17 weeks of not being able to walk, using a makeshift commode for the many wee stops I need in between the kitchen and the lounge, but not being able to make it up the stairs. Weeks in bed, watching the room spin and change only with the fall of day and night, has been rough. I have felt tremendous guilt, panic, resentment and fear for so many months. I have spoken up, and I’ve clammed up. I’ve felt supported and let down equally, by both the system and people closer to me.

But, Master Cullen – this week I bring better vibes. Hallelujah, praise the fucking lord, mama is finding a way to move through the quagmire of the last eight months. And all it took, was a complaint, and someone to listen.

I am forever grateful to our NHS, I sympathise greatly with the challenges they face. However, after proactively trying to access support to stay on top of my mental and physical health during this pregnancy, I have felt let down.

I asked to be under the mental health team to ensure I didn’t spiral like I did with your sister, the idea of this meant I would be allocated a midwife that specialised in mental health and could manage the links between physical and mental health throughout this pregnancy. As promised, I was, and in the eight months I’ve been pregnant, I’ve seen that midwife twice and sent several dozen texts to her that have been completely ignored. I don’t mean answered late, I mean, completely ignored. Thankfully I am not in mental health crisis, but I’ve felt well on my way as my physical health has depleted so rapidly.

I didn’t want to complain, because despite feeling unheard, the maternity team are all lovely. They are just harried and overworked. But it paid, because as soon as I voiced my concerns I was listened to, and am now, finally, being given the support I’ve been lacking.

There have been so many worse case scenarios running through my head about you throughout these months, and on top of those, the impact of being immobile and in crippling pain has had my mood plummeting to the lows I’d been desperately trying to avoid. I felt like I had nowhere to turn, many, many times.

The positives throughout this pregnancy have been overshadowed by the many negatives, but finally I can see the end nearing with a clearer and less restricted view. Soon, you will be with us, and life will look different again, we’ll face new challenges but I aim to face them with hope and a positive mindset. I cannot promise you this mood will last, I cannot promise you my positive resolve won’t waver again. In fact I can probably guarantee you that it will, but I can promise you that I will do my best, for you and your sister, for our family, our future and our new life with you in it.

I promise you that I will try harder to practise gratitude and to speak up loudly again when things get rough, and they will.

The nature of my health means there will be days, sometimes weeks, during your life that I will fail you. Not intentionally, but because my body is failing me. During those times, as you age (obviously not when you’re a baby) you will need to learn empathy and compassion. Your sister is shining a light on that for all of us at the moment, radiating positivity and excitement at your pending arrival, whilst being the kind and compassionate kid that she is. So I know she’ll teach you the ropes. She will also probably force them down your throat, but we are a family of strong girls and you’ll have to get used to that.

As always your Dad is doing his bit and I think he’ll probably need a rest of his own when we’re out the other side. We are lucky, we are thankful and we will be ok, but sometimes when things are hard life seems like a mountain made of quicksand, impossible to climb. I will always try to teach you that nothing is impossible, but it takes time and we’ll need to be patient with each other, you and me.

Love you 💙

Best sister ever

30 weeks of growing you

With each week my mobility decreases, yours increases. You are kicking those feet like your life depends on it whilst my vagina feels (and looks) like a punched lasagne. (I hope you grow up with a sense of humour because if I stop making jokes I will die)

Thirty weeks of uncertainty and stormy waters.

Thirty weeks of tests and tears.

Of what ifs, of percentages. Of comparisons. Of risks.

Thirty weeks of unanswered questions, of time spent in survival mode, counting down and hope.

You are so precious. So physical. So big, so heavy. The excitement I’ve been holding back, too scared to make room for, is pushing it’s way through my fear. I won’t lie and say I’m not scared, because I want you to know it’s okay to be scared. I won’t lie and say it’s not been horrifically hard, because I won’t lie to you, ever. With the exception of Santa Claus and the Easter Bunny, maybe also that the ice cream van is out of stock, oh and superheroes are totally real too, your dad is mine.

What I will say is, it’s worth it, I know this every time I look at your sister. She is so worth it and her start was hard too. Carrying her felt hard too. It’s harder with you because we have already had a taste of what it feels like when nightmares happen, but we also know how it feels to pull through them.

I wonder sometimes how people manage to love all of their children equally when they love the first so much. With such visceral intensity. However, I know with certainty that I will love you as much. I might love you differently, but it won’t be less. I will love you as hard, and you will probably be as much of a pain in my ass as she was (occasionally still is) but none of that really matters. Nothing diminishes a mother’s love. It is unconditional. I didn’t really understand it before I became a mum. I love my own mum unconditionally, with forgiveness and without limits, but it’s different when you become the mum. I can’t explain it. I can’t make sense of it, I just know you’ll be loved as fiercely with the same primal instinct that is ever present in my love for your sister.

You’re not an accident, you’re not a mistake, you’re not unwanted. Just because I haven’t enjoyed carrying you, I haven’t loved the process, I just don’t love it. I don’t even like it, but I still know how much I will love you, because I already do.

I’m not a maternal person, I don’t brood over babies, I don’t love being surrounded by other people’s children and chaos. But I love my own children more than I have ever loved anything. With such ferocity, that it scares me sometimes.

Being a mum is scary generally, it’s always guessing what to do for the best with nobody able to give you a definitive answer. It’s always wondering if you could of done something differently. I wonder that about the last thirty weeks. I wonder if I had done anything differently would I feel differently, would I feel more able, less disabled? Sometimes I think I could of tried harder to fight through pain, fed you better foods, looked after myself better. I’ve done my best though, the best I know how with what I have.

I’ve tried, and if I’ve learned anything it’s that my best is all I’ve got, and it’s enough. I hope when and if you ever read these, you will know that despite hopelessness and despair, fear and pain, the goal never changed. The goal has always been to add you to our family someday, even before we knew about it. To love you, to bring you into this world. A world full of uncertainty, but one in which you will be loved with certainty.

The doctor has told us now that you might come early, they’ve told us you might have a hard start, they’ve told us a lot of things that we didn’t want to hear, lots of things that impact both you and I, but we can’t predict what will happen. So I’m holding out for the might nots, because with risk comes worse case scenarios, and we aren’t in control of those, but with hope comes dreams, and we have big dreams for you.

Thanks for sticking with me for these 30 long weeks. Reminding me that every sacrifice, every ailment, every ‘bump’ in the road, brings me closer to you.

28 Weeks of growing you

After your sisters birthday it was my own. An event that used to have such a big place in my life but that has dwindled in importance over the years and many are now spent in recovery after the buzz of your sister’s celebrations.

We have been out a few days, me on my scooter and had some fun with it too. There’s no denying that it takes it out of me so significantly now, just popping out for a few hours leaves me feeling like I’ve ran a marathon. The SPD is worsening as you grow, and for the last few days I have been completely unable to get myself up in the mornings. Your dad is having to lift me from bed and before I’ve even got my feet on the ground I am crying in pain and it’s hard. It’s not in my nature to be this dependent on another person it’s also scary and feels like another string in my bow of can’ts at the moment.

On the plus side, and there have been pluses, mentally I feel a little less erratic and panicked and more prepared for the worst in terms of my health and mobility. We have had some changes made to the house which is enabling my independence whilst you’re inside me, and will hopefully continue once you are here. Grab rails are appearing everywhere and though cosmetically unsightly, they are providing me with much needed independence.

We will see you again this week, on a scan and talk to the consultant about your arrival. I hope we’ll be able to avoid going overdue with a planned induction rather than a cesarian, just because my recovery is already a worry, but what will be will be. Now things are opening up again and restrictions continue to ease, I hope extended family will make more effort to be involved and help with your sister if only to take the onus off of your dad. He returns to work this week after a week off, being without him will impact me again. He has been so hands on and it’s fair to say I don’t know what I would do without him how I would of gotten through these months without his undivided support. Your sister is going into holiday club for a few days this week to take the edge off and we’re lucky that she is a sociable little darling who’s happy to make new friends.

She went quiet for a while asking about you but her interest has piqued again and we are getting back to our daily chats and cuddles, though your kicks don’t seem as exciting to her at the moment, your pending arrival definitely still is. Onwards we move through the quagmire of a loose routine and no real structure, getting by on a wing and a prayer, but getting by we are with a lot of love and a little help from our friends. 💙

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

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

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

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

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

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

What does high risk mean?

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

What does in mean in my case?

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

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

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

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

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

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

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

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

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

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

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

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

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