I was asked to write about what its like to be a Mum when you have a chronic illness, but before I start banging on about how hard my life is, I'd like to start by saying I understand there are mums and dads (with and without illnesses) that have it a lot harder than I do. Single mothers/fathers, people with 5 kids, people with kids with illnesses, you lot all have it wayyyy harder than I do and I salute the cr*p out of you guys, like, I literally bow down to you because you are amazing! So this is just my account, from my point of view, of what it is like to have a child when you have a chronic illness....
I'm gonna give y'all a little back story just so it all makes sense so bare with me. Please also note, some of this might make for uncomfortable reading as I have decided to be completely open and honest about all aspects of my life.
I was diagnosed with Lupus in 2011 when I was 25 years old, I'd been unwell on and off for a year or two before I finally got my diagnosis. At the time I was also diagnosed with Anti-phospholipid Syndrome (APS), Sjogrens and Fibromyalgia which was almost a relief as after being fobbed off by different doctors, I was starting to believe it was all in my head!
During this time I was also warned that getting pregnant would be difficult and my chances of miscarriage were extremely high due to the APS. I hadn't really thought much about having kids at that point, I still felt too young and had more things I wanted to do but it obviously got me thinking and I realised I did want children at some point. It's funny how growing up you just assume you will get married and have kids, you don't expect to be told it might not happen for you.
A few months after that shocking news, Sami proposed to me. It was kind of expected as we'd been together 6 years, lived together a couple of years and I was starting to think about marriage etc. I wanted a ring on it! A year later we got married. I was so happy and realised giving up work did me good. I still had the odd flare up and bad days here and there but not having the stress or pressure of work meant I could live an almost normal life.
I was doing so well that Sami and I had the chat about trying for a baby. Eventually, we came to the conclusion that it would be a long time before we actually had one. Of course I got pregnant straight away, when I told Sami he genuinely didn't believe me!
The doctors kept a very close eye on me, I had scans every 3 weeks and was told to relax as much as possible. I was remarkably relaxed throughout and loved being pregnant. My mum agreed to look after Millie when I went back to work. We had it all worked out.... But no one or nothing can prepare you for how hard it is.
We were lulled into a false sense of security as Millie slept 12 hours a night from day one. We used to have to set an alarm to feed her in the night! Once she got to 6 weeks old we let her sleep through. She was a dream. Due to Millie sleeping and feeding so well, I honestly found it easy. I wondered why new mums always banged on about how hard it was! I slept when she slept, I was still able to get the housework done, I even had social life in between.
When Millie was 5 months old, I went back to work and that's when life got really tough. Millie was teething when I was due back so sleep was a thing of the past. I started work early at 7am and Millie cried all night. What happened to my dream baby?! My first day back on next to no sleep was horrific! Millie continued to sleep poorly, crying pretty much every 2 hours every night for months. I was exhausted and my job was physically hard, on a busy day I'd easily do 20,000 steps. I look back and I honestly don't know how I did it.
After a while I increased my hours at work so I was doing three days, I'm not sure why I thought that I was a good idea?! What was I thinking man? I'd go to work then go to my mums to pick Millie up, get home, cook dinner, do housework and entertain Millie until she went to bed at 7.30. Some days I honestly hadn't sat down for 13-14 hours. This lifestyle really started to take its toll. I was so tired, I felt like I was losing my mind sometimes.
This went on for just over a year until I reached a point where I thought I was having a mental breakdown. We finally got round to selling our one bedroom flat but the stress got to me. Our sale fell through 12 weeks into the process. We'd found our dream home and the thought of losing it this far down the line broke my heart. We managed to find a new buyer just in time and the place we wanted were happy to wait, so it all worked out in the end but the stress caused me to have a huge flare up rending me bed ridden for nearly 6 weeks.
Those 6 weeks were hell. During the week my parents had Millie and at the weekend it was down to Sami. The guilt I felt was off the scale! I'd lie there in agony feeling so guilty for not being able to look after my own child, I felt guilty for making Sami do most of her care at the weekend after he'd had a busy and stressful week at work, I felt bad for not being at work, I felt bad for making my parents worry, the list goes on and on. As a result of this and being on my own all day, I started to suffer with anxiety. It got so bad, I was waking up in the middle of night gasping for air, thinking I couldn't breathe. At one point I was physically sick. The anxiety escalated to the point where I was worrying about random things that didn't even make sense. I'd imagine these weird scenarios like me suddenly
letting go of the pushchair and a gust of wind making it go flying into the road. I'd imagine all sorts of silly things like that and sometimes they'd be so graphic I'd wince.
The anxiety made my Lupus worse so I was waking up every day feeling hyper-anxious and in excruciating pain. It got so bad that I ended up self-medicating with wine. I started drinking most nights and would need more and more wine to turn off the crazy thoughts. One day I hit rock bottom. I was sick one Tuesday morning after drinking heavily the night before. Millie was standing next to me saying, 'Mama, what doing?' and I realised there and then I had a problem, My 2 year old was right, what the hell was I doing?!
I pulled myself together and booked a doctors appointment that day and that evening I confessed to Sami what I'd been doing when he was out at football, he was so amazing and supportive, I couldn't stop crying. I felt so ashamed. I rang my mum to tell her I'd been drinking heavily most nights and fortunately, my mum used to help rehabilitate people with drink and alcohol problems so she knew exactly what to say and what to do. I told my immediate family and my closest friends what had been going on and I'm glad to say I have come out the other side. I have addressed my issues and I'm working through them. I'm also on the waiting list for some CBT as I defo need help with this anxiety! It wasn't easy to admit as that meant having to deal with it but I had no choice as I have Millie to think about.
So the past few years as you now know have been an interesting journey! Apart from losing my mind, a couple of jobs and becoming an alcoholic, it’s been wonderful!
Here is what I have learnt:
Having a baby and being a first time Mum is hard but when you have a chronic illness there is much more to consider. I honestly wouldn't have considered having a child unless we had a solid support system, which thankfully we do. We are fortunate enough to have all our parents living nearby and we have brilliant friends who would drop their plans to help if needed. Without my mum nearby I don’t know what we would have done, she has pretty much sacrificed her own life to help me and has gone above and beyond for Millie and I.
You learn to make the most of the good days and as a result I sincerely hope most of Millie's childhood memories are of those good days and not the days I was so tired I had to stick her in front of Peppa Pig for an hour.
You learn to accept help. If anyone offers to babysit/do housework/cook dinner, learn to say YES. You won't regret it.
You learn to accept your limitations. If you're tired don’t plan on doing all the housework. It can wait. Your child wont remember the time you didn't hoover but they will remember the time you played and had fun.
You learn that Mum-guilt and anxiety are part of the course. Even for healthy mums. Suck it up buttercup.
You learn that everyone has a challenge of their own, this is your challenge, don't dwell on it, embrace it, accept it and find ways around it that work for you.
You learn that the most important thing you can give to your child is love.
And last but not least, you realise you can't be a perfect mum, no one can, but as long as you are doing your best then that is enough. You are enough.