Pregnancy & M.E.
When Louise approached me to ask about writing an article about pregnancy and chronic illness I was honoured and thankful that she felt that I was a good voice for the subject; however, I was also taken aback as I never thought that I would be the person to give advice on the subject. I'm writing this now as I lie flat with a spinal injury, my seven-month-old younger son on his front beside me, determined to master how to crawl, and in the background my two-and-a-half-year old son is playing in his room, dealing with a “crisis” of epic proportions for Thomas the Tank Engine and friends. I never thought this would be my life but I'm thankful for it every day and I'm so humbled that I have been given the opportunity twice. I am going to share with you my personal experiences, some words of wisdom from a very dear family friend and “Spoonie Sister” and give you some tips so you can enjoy the most incredible journey you will ever take.
I will firstly give you a shortened version of my own personal story, You are not Your Illness, which I wrote when I took on the role of M.E. Support Ambassador. In May 2009 I had my first experience with pregnancy with my ex-partner. I was 21 at the time and not in the best place in my life; I didn't know I was pregnant and didn't think there was a chance I could be. When Mother Nature’s “gift” didn't turn up I started to panic and, to cut a long story short, I eventually found out I was pregnant. Two days after I found out, I started spotting blood and went to the doctor; he took blood tests etc. to confirm pregnancy. Two more days after that, after picking up a friend who had come to visit us, I got home and realised my trousers felt wet. There was blood everywhere and I was hysterical: I had miscarried. I was diagnosed with M.E. and Fibromyalgia in 2013, and have since added to that list. However, the doctors believe I've had them since childhood; I just didn't know it. In September 2014 my husband and I got married and began to talk about whether or not we would like to start planning a family and whether or not it was realistic. Because I'd miscarried before and had chronic illnesses, I was scared about whether I could successfully sustain a pregnancy. My husband always wanted to get married and have kids. His father passed away in 2011 and he was his hero, role model and his best friend. He wanted the chance to pass the lessons on to his own children, but I wasn't the “typical wife” and I was afraid. My GP at the time took great care of me; she told me that she saw no problem with me trying for children. She understood how apprehensive I was and how my concerns were valid, but she knew I had a good support network within my family who would physically help care for a child and knew that I would love and nurture a child to the best of my ability.
In January 2015 we thought I was pregnant, but it turned out to be what's known as a “phantom pregnancy” after coming off the contraception injection. We were heartbroken, and I really felt like I couldn't continue on the journey, but I didn't want to give up and I wasn't going to allow chronic illness to take more from me than it already had. In June 2015 my husband and I found out I was successfully pregnant. The pregnancy itself wasn’t too hard; that's the ironic thing about M.E and other chronic illnesses – they prepare you well for how you'll feel during pregnancy and parenthood. We're pros at surviving on very little sleep, dealing with nausea, headaches, joint pain, dizziness and so on and so forth, so I really didn't feel too different. I was lucky I never had morning sickness, but I did suffer from Pelvic Girdle Pain, where I found out I was also Hypermobile in my hip joints. It was other people and their judgement that was the hardest thing, and I later wrote about this experience in the M.E. Support Blog. One woman in the M.E. community actually told me I was “a selfish, disgusting human being” and that “being pregnant means you aren't as ill as you say you are”. This shocked me to my core: it was awful to have someone in the M.E. community, who is supposed to understand how you feel day in day out, judge me so callously. I came to realise that there are a lot of negative, jealous people out there, waiting for their chance to project their “chip on the shoulder the world owes me a favour” routine on you, but ultimately it is your life and your decision. Anyone who knows me will tell you my sons are my everything: I live for my boys, I push myself every day to be their Momma and to make sure that even though I have chronic illnesses they will never have to be negatively impacted by them, and that's all it is about – giving them roots and wings.
My eldest son, Macen, was born in January 2016. He is now coming up to three, and in his last developmental review I was told he was good enough to start primary school with the level he is at, never mind nursery. The health visitor told me she could see how much time I'd put in and I should be proud of what I had achieved. Those were the best words I could've heard as a “Spoonie Momma”, and for a minute I felt worthy of the title “Momma”.
We had a shock in July 2017 when I found out I was pregnant again, with our second and final addition to Clan Hanslow, and I'll admit I struggled emotionally throughout my pregnancy; I couldn't imagine being enough for two children when I worried about how I was doing with one. I have proven the doubts wrong and in hindsight I'm so thankful I didn't make a decision I'd have bitterly regretted. Carson was born in February 2018 and my word, what a ray of absolute sunshine he is.
I know the worries that come from being a parent with M.E and other chronic illnesses; it's a big decision for anyone, never mind when you have “the gremlin” to worry about. If you are in a place in your life where you are thinking about pregnancy or have received the news that you are pregnant and you're wondering “Am I enough?” or the inevitable “What happens on those really bad days I can't get out of bed?” and all those thoughts in between, I want to tell you that no one finds parenting easy; if you do, then I'm sure you're doing something wrong. The fact you are weighing up all the options, not rushing in and wondering if you're enough, already proves you're thinking like a mother. There will be hard days, and sometimes those days inevitably turn to weeks. However, the best thing I did was decide to have my boys: they unleashed a whole new level of strength within me and they gave me hope and purpose. All it takes is four little words, “I love you Momma”, and every struggle is worth it. There are times where I've felt incredibly guilty. I feel bad that a sunny day or two has passed and my boys didn't get out to play; instead we played together and read books in my bedroom because I wasn't up to it that day. I want to take the opportunity to share some very beautiful and emotional words my dear friend Kirsty shared with me. She has battled chronic illnesses since childhood and has three beautiful, grown-up girls, and has recently become a Nana and welcomed a grandson and granddaughter into the world.
Kirsty said, “I always felt guilty. Guilty I wasn’t active enough with my girls, guilty for being too tired to take them on day trips on my own during the long summer holidays. I longed to be the mum that went for bike rides with them and swimming. Even sports days, when everyone else had a mum in the mums’ race, I couldn’t compete. Then I thought about today, what my girls sit and chat about now, reminiscing about their childhood as two of them are new mummies themselves. It’s the pyjama days watching Disney movies, because in reality I was too shattered to do anything else. They love to talk about all the times I would take them out to the back garden to watch the stars and eat toasted marshmallows on a warm summer’s night. We would read lots of books, and they have all their favourite books to this day, cherished and well-read, and will no doubt do the same with their own children. Those books took us on adventures which we could all go on.”
This resonated loud and clear for me, but the thing that got to me the most was how Kirsty hit the nail on the head by saying, “As my daughters taught me, children love nothing more than having someone to sit in the garden and look at the stars with.”
These are the moments that make parenthood the wondrous adventure it is. If your child knows no matter what, that you will always be there, fighting their corner, supporting them in hard times and celebrating the good, making memories in the simplest, most beautiful way, full of nothing but love, then that is truly all that matters.
Adapt to your circumstances and know your limits. Pregnancy puts more strain on the body so if you have to take more naps, do so. Even once baby arrives, you should always try and sleep when baby does.
Support, Support, Support. I'm not just talking support network here! Having people around you who you trust to confide in and to help you out is key; whether it's your partner, a close friend, family members or even your GP and midwifery team, make sure you remain honest and open and don't be afraid to ask for help. If you have someone with availability to do so, try to see if they'd be willing to help with household chores once baby is here for the first week or two. A good support pillow for aching joints and sleep support is also a must! Whether it's a full-body pillow, a “V” shaped pillow or a nursing pillow, having it to put between your knees and around bump takes some of the strain off and helps you get comfortable and relax a little more.
Try a gym ball. Exercise can be a real hit-and-miss part of chronic illness, but I'm not suggesting an acrobatics display: simply sitting centred on the gym ball, legs slightly apart and gently balancing you while doing very, very gentle hip rotational movements helps strength and supports the core, taking pressure off. It can be used during labour also, and can help the baby move down the pelvis and promote dilation.
Make your needs clear. Talk to your midwifery team, make sure they understand the difficulties you have and voice any concerns you have. They may refer you to a gynaecology specialist; if they do, they will be a good person to ask about the best steps for you and your circumstances. I can't recommend enough that you make sure that you make it clear to friends and family that once baby arrives, they must give you time to rest and bond with your baby. They will be excited, sure, but make it imperative that only immediate family sees baby in the first 72 hours and don't be afraid to make it an up to 5-7 day “no visitor” policy. You need to recover, and it can be stressful having baby passed around a crowd of people; limit their time and how many you see at a time.
Organisation is a must. People thought I was crazy when I started packing my hospital bag from 20 weeks, but I told them, “The bigger and further along I get, the more energy it'll take, so I'm giving myself time to get it properly prepared.” Think also about batch cooking or getting a family member or partner to batch cook foods nearer your due date, so when you get home with baby, meals are much less hassle.
Enjoy your journey and remember it will be what you make it. I didn't get the chance to really enjoy my pregnancies: my husband's family made my first a nightmare and I was so apprehensive of my second, but I always made time for me and bump moments. Talking to my baby bump when I couldn't sleep during the night, feeling the little, and sometimes vicious, movements and pushes as answers to my questions is something I will cherish. Ignore the horror stories of labour; it truly is what you make it. Keep calm and remember each contraction is a step closer to having that soul-exploding moment of holding your son or daughter in your arms.
I hope you've found this helpful on your journey and I wish you all the happiness and luck in the world. I'm happy to be contacted privately via M.E. Support to help anyone concerned with pregnancy and chronic illness or looking for someone to confide in; please follow the link at the top of this page to get in touch with me. This journey will challenge you and change you forever, but even on the worst days, it's truly a beautiful blessing to be honoured with the title of “Momma”.
“It doesn't matter what's been written in your story so far,
it's how you fill up the rest of the pages that counts”