Confessions of a chronically ill mum #3

Where to start. Good news or bad? I think I’ll start with the good. The weekend just passed, my husband and I went away for a cheeky, little, couple’s soirée. We travelled about an hour away from where we live in Bristol, to the Mendip hills and stayed in a holiday cottage. It was divine. The most exquisite bedroom complete with a roll top bath and Netflix, we spent most of our time in there catching up on….. you guessed it, sleep!

It also had a wood fired hot tub, we only successfully heated it up once, so the following day we had to cold dip instead! Suffice to say that ‘dip’ was much shorter in duration!

I’ve mentioned in previous blogs that I don’t really drink alcohol anymore. Only on very rare occasions, not because I’m a martyr or anything like that, just because my health doesn’t really allow for it these days. I was worried about how we would entertain ourselves without booze as this is the first time we’ve been away together since our wedding in Jan 2020! I needn’t of worried though, we had such a lovely relaxing time, chilled, acted stupid and just made the most of not having a child hanging off an arm each for three nights! I also managed to get through the weekend without any real flare issues. I did have hormonal cramps on one of the days but given the pain levels I’m used to, it was manageable and I’m so thankful for that.

Fast forward to Tuesday and I received a letter I wasn’t expecting. I’ve had a lot of tests recently because of a decline in my health and new unexplained symptoms. One of the tests was a standard blood glucose test and one of them was a cholesterol test. My cholesterol has been high for some time and I’m now, at aged just 33 being told I’m at serious risk of developing cardiovascular disease in the next five to ten years and will require lifelong medication to prevent the risk of heart attack and stroke. I had gestational diabetes in pregnancy and was prescribed both oral and injectable insulin. It was hell on earth to be honest, I became obsessed with my sugar levels and racked with anxiety and panic. My blood glucose result is high again and I read it and cried, my father has type two diabetes and because of having gestational diabetes I am high risk already. I believed immediately I had type2 and would need insulin again. It turns out after reading the results properly, I’m in pre-diabetes or borderline diabetic. Which means: I need a lifestyle overhaul immediately.

It’s safe to say despite not yet being diabetic I am still devastated by these findings. On top of, Fibromyalgia PMDD Migraine SPD and Post Herpetic Neuralgia (reoccurring shingles pain) and catching covid at Christmas and currently being screened for heart and breast problems, I’m already in a pretty bad way. If we add in the mental health stuff too, Panic disorder and Perinatal Anxiety you might be starting to understand, as to why this has devastated me so much. Or you might be thinking I’m a hypochondriac, I wish I was. But sadly, all of this is very real.

At the moment, I feel shrouded in guilt and shame around having so many health problems at 33 years old.

That might sound crazy, because I didn’t ask for any of this, but I haven’t always followed advice either. I haven’t always done the right thing when it comes to self care & I’m struggling with that, because now I’m having to live with real life consequences.

I’m struggling with it because I have two kids & I feel like they deserve better than what I’ve been able to give them. I can’t even get decent life insurance with a premium that I can afford because my health is in such a poor state.

I feel guilty when I can’t get to Kaiser fast enough because my body isn’t playing ball or when I can’t rock him to sleep or carry him upstairs. When Ciara sees me in bed for the 1000th time on a weekend (the only time I can get a break when my husband is home) and asks me when I’m going to feel better, it makes me feel like shit.

I mentioned last week that I’ve let myself go, particularly in reference to my weight and I know some people reading this will think, just lose weight then! But it IS hard when your body punishes you every time you exercise and your mobility is extremely limited.
It IS hard when you’ve given up lots of the things you used to enjoy, and now your main thing to look forward to is what you’re eating.
It’s hard when your hormones upturn your life every two weeks and your hunger is cloaked in rage and desperation. It’s hard when you have no energy to prepare food, and you can’t open the lid on a jar, or lift a pan without help. It’s embarrassing. I am embarrassed. I’m ashamed to admit these things, they are the things I keep hidden or try to do independently and pay for afterwards. I’m telling you now, because it’s the truth. And because I know I have to take some accountability for the state my health is in.

Confession: These are excuses, but (hear me out) in some cases they’re valid excuses, because they do affect my ability to live a healthy lifestyle. And on top of those excuses I have been making positive changes. I’ve made so many I can’t even tell you, especially in direct relation to my mental health. However, physically it’s not enough, there is no alternative. I have to start somewhere, I have to lose weight, I have to try and build on my fitness somehow, and I have to start now. 

I’m not wallowing in this latest health hit. I refuse to do that. I cannot be overcome with additional anxiety about my health. I cannot change these things overnight, but I may be able to limit some of the risks if I start now.
So here I am, baring it all. Starting where I am and working with what I have, now, today. (Well actually I started yesterday, as soon as I read the letter.) It’s not going to be easy, but I can’t waste anymore time on excuses. I can’t just wait and see. I have to take drastic action.

I have to take action, for my family.

If you or someone you know lives with any of the health conditions mentioned you can access information about where to get support via the hyperlinks. 

Pregnant and chronically ill.

Some of you might know my story already. I married my husband in January 2020, we did it just the two of us and it was amazing, but since our wedding, lockdown and covid-19 have presented challenges, as it has for everyone, I’m not naïve enough to believe I’m alone with that and I know there are people everywhere that have it a lot worse than I do.

For me though, my health deteriorated again and baby making was not on the cards for us during lockdown…. or so we thought.

We had a baby in 2016, and she’s a healthy, sassy four year old, but her start in life was hard, on her and on me.

My pregnancy was not an enjoyable experience, I didn’t feel well for a single day of it. I was debilitated by hormonal migraines and nausea throughout, and by 16 weeks I was on crutches diagnosed with Symphis Pubis Dysfunction- a condition that causes your pelvic ligaments to become stretchy and relaxed, making walking painful, the same condition had me in a wheelchair by 25 weeks completely disabled. Later I had preeclampsia, I was admitted to hospital and after several attempts a doctor finally managed to break my waters, my contractions were then hormonally induced. I often refer to labour as the easy part after 9 months of what felt like torture, but honestly, none of it was easy for me.

I was taking antidepressants throughout my pregnancy to manage my mental health, and as a result my daughter was born with Neo Natal Abstinence Syndrome.

A condition where babies are born withdrawing from drugs they’re exposed to in utero. I wasn’t warned about this, I was told the medication I was taking was safe for my baby. Withdrawal was something I assumed only illicit drug using mothers experienced, I was wrong.

She was in NICU for 10 days and then she screamed for 15 hours a day for almost 10 months. I’ve since spoken to people who were on similar medicines and they’ve had different experiences so it’s important to note, I’m not trying to scaremonger here. I believe in looking after your mental health, but there is no dressing up that it was a very traumatic time for us. I think the consensus is not to force mums to stop medication that keeps them well, and of course this makes a lot of sense, I just wish I had been armed with facts sooner. I was peri and postnatally depressed, suicidal at times, and it hurt. It massively effected my pregnancy and birth experience, my early bond with my daughter, and I don’t consider it a positive time to reminisce about.

Given the story so far you’ll have probably read/heard me freak the fuck out at the thought of baby no 2. Yet here we are, we got bored in lockdown. We ran out of things to do, we also ran out of condoms. (That was a joke btw don’t @me) Shaun always wanted baby number two, and for the last year Ciara has asked for a sibling, but the truth is I never wanted to be pregnant again.

But I am, kind of by accident, almost certainly by fate.

In truth, I’m petrified. I haven’t acted happy about it, because I’m not about being pregnant, not really. I know how ungrateful that must sound, and let me be clear, I want the baby, I love being a mother, it’s my life’s biggest achievement. What I don’t love are the effects pregnancy has on my health and well-being.

I battle with guilt daily about my dislike for pregnancy, because I know I’m lucky to be able to birth children.

In an ideal world I would have weaned off all of my medication before conception this time, but I have a chronic illness, one that takes over much of my life. I am constantly met with new symptoms, making it impossible to imagine a life without medical intervention. You know when people say ‘you’re pregnant not ill‘ – Well in my case I’m both. Most of the time giving things up in pregnancy is par for the course but what about when you’re giving up drugs that have kept you well for years.

So, I’m withdrawing from several different types of medication at the moment, but I’m still not medication free and I might not ever be. It’s hard on me mentally, to know I could go through the same thing twice with NAS and having a baby in NICU.

In my dreams this pregnancy would be totally different, I’d be fitter and healthier, mentally stronger.

Unfortunately it hasn’t worked out that way. I’m not going to miraculously become well whilst living with a chronic illness, (chronic = ongoing) if anything it worsens as the years progress. I haven’t gotten better, and I feel as awful as I did in my first pregnancy if not worse, because there’s more to worry about – a lot more.

Midwives have classed my pregnancy as ‘high risk’ for preeclampsia and SPD again (I’m already struggling with this just 14 weeks in), and for diabetes, and that’s without accounting for my illnesses and the cretin that is Coronavirus robbing us all of joy.

I feel like somedays, even before pregnancy, I was barely hanging on to my ability to cope as a functional human being, do the fundamentals like washing and cooking meals, and yet I’m putting my body through this again and it already feels hard.

So what happens if I can’t look after a new baby?

What if they cry for 15 hours a day again and I have a breakdown?

What if Shaun leaves me for our skinny neighbour with muscular thighs and perky tits?

What if, what if, what if…..

It’s a redundant question, because what if I got ran over by a bus tomorrow?

I could cite an endless lists of what ifs, but to get hung up on them means I also need to think of the flip side, that being, what if things work out ok?

A pandemic is a big deal to the most hardened of us. So being pregnant with several illnesses and a penchant for going fucking mental at the first sign of a hormone shift feels ominous, but we’re doing it.

Baby 2.0 is coming!!

Aside from being terrified, feeling even more like shit than usual and eating everything in site, I’m optimistic, because despite ALL of that, this time I really do know it’s all worth it in the end.

I’m being seen by the maternal mental health team this time, an option I wasn’t (but definitely should have been) offered in my first pregnancy. And I have a plan for my physical health issues and medicines, it’s not a great plan, but it’s a plan that involves a lot of listening to my body.

On top of that, I have a family who have my back. We’re a team and we’ll get through it because we have each other and because we are lucky, and this, however hard it feels, is a blessing.

I wanted to write this, because there still feels much stigma around not loving every second of pregnancy and motherhood.

There is never a time when I feel unlucky in motherhood. But sometimes I feel unlucky in health, and pregnancy is hard on my health, it’s hard in general, as is parenting, at times, for all of us. And it’s ok to say that out loud.

Our journeys are different and we are forever a divided world on how to parent, because there’s no rule book and we all have our own unique way.

I wish I could flip a switch and love every tender second of motherhood, but my truth is, I don’t love pregnancy and my experience of newborns brings with it traumatic memories.

That doesn’t mean I don’t love being a mother, it just means it’s not straightforward. I didn’t want to announce my pregnancy without having explained how I feel because I’m sure there are other expectant mothers who feel similar to me that don’t have the confidence to say so aloud.

There’s so much pressure to say over and over again how much you love your kids, how blessed you are, and if god forbid you forget to mention that, obviously you don’t deserve to have them.

What I actually think is, all you can do in these times is YOUR best. There will always be people that are struggling for different reasons in every aspect of life.

When it comes to your baby though, I really feel, like your best is good enough and what works for you, what keeps you well and healthy is as important as protecting that newborn head.

We will delight in the birth of our second child as we did our first and we will get through the tough times because this time, we know they really don’t last forever and the long nights whiz by with painfully short years.

Motherhood is hands down the hardest, most rewarding job and my only goal is to be good at it (and to get to the end of this pregnancy with both of us in one piece)

NB: If you’re struggling with maternal mental health please visit Maternal Mental Health Alliance for support.

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust