What difficulties do I face, being a disabled, chronically ill, mentally ill, and ostomy mom?
🌺 emergency bag changes before 7pm; finding a good time where my baby is occupied! He goes to bed around 6-7pm, so usually, I try to wait it out until then, if possible 💩
🌺 when I’m vomiting; I must have my partner stay home to help 🤢
🌺 medications are limited; majority of medications have horrid side affects, meaning they cause drowsiness or vomiting. I have to avoid these if my partner is working, no matter how badly I may need them 💊
🌺 low self esteem/mom guilt; taking a break because I’m so fatigued and leaving the housework for a day or when my partner has him all day due me being ill, leaves me with a great deal or mom guilt. “I can do better” 💔
🌺 PTSD being triggered; I loose sleep, have panic attacks at night, sometimes I vomit, I get overly anxious and focus on if the doors have been locked to the point I cant sleep, sweat and feel poorly🥵
🌺 social media negativity; people giving their opinions on disabled/chronically ill mom’s that “shouldn’t have children” and the back lash of raising awareness
🌺 hospital appointments; having to work them around my baby and, for example, having to travel hours for an appointment that can also take hours. This means jaimie and odin have to wait around for me and Odin gets his routine interrupted 😫
🌺 judgement on not working; “why can’t you work?” Or “surely you could get family to look after your baby so you can work” I do plan on going back into work but, online only. I recently took part in Style Fixers, who helped me with dressing for interviews and going back to work over at BBC iPlayer 😁
🌺 mobility issues; I’m not always able to go out and walk around most days due to pain. I so however, sit in the garden with odin at any given opportunity!
🌺 surgery/hospital admissions; this can be emotionally so tough. Being away from your baby is horrible! You feel so lost BUT it gives me motivation to recover and get home as soon as I can. It’s also motivation to keep going!
🌺 isolation; friends stop inviting you to things, not being able to join mom groups because they don’t understand my conditions
These are just a few, many difficulties, other disabled and, chronically ill mom’s, face too. Our culture needs to be more accepting of our struggles, and, to make places more accessible! It’s 2022 and times are changing, the nature of our conditions are being spoken of much more, making advocacy a huge part of society. Its so important to be a voice and all disabled/chronically ill mom’s to have a voice, in hopes of helping you understand which, in turn, helps you, help us!
Recently, my partner and I have been calorie counting and eating much more healthy. If you are new to my blog or didn’t know, my partner also has an Ileostomy and we both have Crohns Disease.
Six months ago, I had a c section to have our son Odin and since then, I have put on weight whereas before my son, I struggled to keep any weight I put on. I’ve not only struggled with fitting into my clothes and body confidence, but also my skin. It’s not unknown that skin conditions associated with Inflammatory Bowel Disease can creep up on you at some time in your life and for me, this started three months ago and I had no idea what to do. I didn’t want to leave the house, I made very minimal effort but whenever I did have to leave the house, I tried to cover my red and broken out skin best as I could. It was also extremely painful and washing my face hurt and, it would smell really bad some days. Like others with IBD, I need to have a low fibre/low residue diet which can mean a lot of fatty, processed and sugary foods because most healthy foods cause pain, wind, diarrhoea, blockages and vomiting.
As I said at the beginning, we started healthy eating and calorie counting. Now, we had zero idea how this was going to go because throughout and after my pregnancy, I kept getting really bad blockages and severe constipation. Every time I had any fruit or vegetables, my stomach and stoma played absolute havoc! So far, it has been two weeks since we started our weight loss journey with an app called My Fitness App, recommended by two other ostomates on twitter. To start, I put in the current weight I was at, my height and what my goal weight is that I would like to be. It then calculates how much calories you need per day and it has a diary section where you put in your intake for breakfast, lunch and dinner, as well as snacks and water intake.
Meal planning has been much easier than we expected. The app has a recipes section, with lots of amazing recipes to choose from. When it comes to eating healthy and following recipes, you need to adapt them to your needs and so, in this instance, I know I cant eat anything wholemeal at all. So for each recipe that uses wholemeal for example, rice, I use white rice because that’s what is safe and best for my stoma and Crohn’s. It’s been so much fun making everything from scratch at home together! My favourites are the banana and almond smoothie and the potato and carrot latkes. There is also a section for workouts such as yoga and videos showing you how! I haven’t ventured into these yet but I do plan on doing that next week as at the moment I am trying to go for small walks each day to get steps in but I find that difficult due to my mobility issues so I know the home yoga may be good for me.
So, to current date (6th April) I have lost 8 pounds! My skin has also become so much better as I don’t eat a lot of processed foods that I had previously of eaten a few weeks ago. Food somehow tastes a whole lot better and so much more fresh. We are enjoying it so much so, that takeout isn’t very appealing anymore! I’m looking forward to fitting into my clothes and just feeling better in general. I have noticed how much better mentally I feel by cutting out crappy foods and snacks, not fully, because obviously I have mental health conditions (which are caused by chemical problems in the brain and gut) so they will never fully go away but any improvement is better than none in my eyes. I have surgery to remove all my wisdom teeth in May, which means I will be on a liquid diet for a couple of weeks. There are lots of high calorie but healthy things available on the app, so I can find lots of recipes to help. There is also Google, so these will make sure I don’t loose too much at once.
If you want to loose weight, you have to make the start! Adapt the diet and recipes that you know, to suit your body and chronic illness. That ensures you don’t cause any issues for your health by triggering any flares etc. Good luck to anyone on their journey or if this has given you motivation to start then I hope it goes well! ❤️
Once you have a son, life is never the same and you find it hard to imagine what your life was like before he made his appearance into this world. It is the most wonderful feeling to be a mum! I wanted to write a letter to my son so when he is older, he can read this. Many other mums may also be able to relate to my pregnancy and fertility journey!
I carried you through the hardest months I’ve had in my life so far. Pregnancy was hard and with chronic illness, a stoma, PGP, and mental illness added into the mix, it was quite the mocktail without the cherry on top! As you began to grow in my tummy, I felt butterflies rumbling as you moved in your sleep, when I played music, and when I lay in the bath (I knew from that first wriggle in the bath and every time I was in there, that you were going to be a water baby!) If I hadn’t of announced I was pregnant with you, everyone would have been none the wiser, due to having such a small bump, which didn’t appear until you were around 26 weeks old and boy, didn’t I know about it when I did! I felt every kick and hiccup which was super painful but rewarding at the same most precious time. Your favourite place to kick was under my ribs and my bum! It’s a sensation I can never really explain to anyone when they have asked how it feels, all I can say is it’s super sore and weird but also funny at the same time.
I remember the very first outfit I ever got you, it was just after my gender scan and I had found out we were having a little boy. Now the gender scan did not go to plan at all! When I think back, I laugh! I had taken a Chinese gender scan online and, with the symptoms I had whilst pregnant with you, it appeared to me, that I was having a girl! When the person doing my scan said I was having a boy, I was so emotional and I cried. Half of those tears were due to hormones and the other half was down to being so annoyed at myself for thinking you were a girl and also due to grief. You see, before I was pregnant with you, I had a previous pregnancy but she had to leave too soon with the doctors help as I was too poorly. It would have been her 3rd birthday this year and she is never forgotten even though she was so little ( I say she because [some may not believe in this] I saw a pshyic medium who seen her with your great, great granny). Now, your outfit was this gorgeous blue and white winnie the pooh shorts romper, you’ll see this picture below.
SO cute!! At just 5 months, you have the greatest lanky legs like a dandy long legs! Which you love to kick around and swing left, right and centre whilst wriggling and rolling in mid nappy/clothes changes, cheeky! You might notice when you’re older, a little cut on your hair line. This is because I had to have my tummy cut open to give birth to you, ouch! I’ve had lots of many different surgeries and by the time we read this and you’re old enough to understand, I know I will have had lots more! Never worry, I’m always looked after by very nice doctors and nurses and I had many surgeries before I had you so I’ve learnt a thing or two on how to be a tough cookie! Same as for your daddy, which is how we met, and is a story for another time.
Being your mummy is hard some days because when I am sore, I become very tired and some things that wouldn’t really bother me most days, bothers me and I get grumpy. Like not being able to take you out for walks in your pram or having the house clean and tidy. Every time you laugh on those hard days or when you smile or say “dada” it helps me feel better and it makes them so worth it! When I see you splashing in the bath and having so much fun soaking my face, all I can do is laugh. When I hurt and feel pain, your cuddles are the best medicine I could ever need. You are six months old and growing so quickly, slow down! I haven’t had enough of my little baby just yet, and maybe you will always be my baby boy. When you are old enough to understand, I can explain in more detail just how much of a special little rainbow baby you are.
A little miracle. A blessing. Pure joy.
Your big brother Biggie knew when I was pregnant with you before we had announced it to all our family and friends, and has loved you from the minute he knew. He loved to lay his head on my belly and listen to you inside! When I brought you home, he slept by you in your moses basket and bouncer chair and still now, loves to be by your side. You have just started to see him as a dog with fur and his big flappy ears! You explore his face and body with your tiny little hands and fingers, feeling his soft smooth and jabby fur as he naps next to you before you too drift off into a nap. You are trying to say “dog” too! What a clever little man you are. As you grow older, Biggie will too, and he will always be your bestest friend and remember that Biggie is part of the family, more than just a dog!
Sometimes, I may need to be away from home when I don’t feel well but always know, I’ll be coming back home to you and when I do, I will always be ready for your kisses and cuddles. When I am away, I go to a place called the hospital where I get looked after and helped to feel better so you mustn’t worry. Daddy and Biggie will be there with big cuddles and Biggie more than likely will make you laugh with his loud and stinky farts!! Sometimes daddy may need to go to hospital to feel better, too,but he is much more braver than I and we never need to worry. You will also become aware that both Daddy and I poop and fart differently with our pink squishy buttons on our tummies! My squishy is called Lola and she saved my life and she can be very funny! You will learn all about her from your Buttony Bear book i read to you through the years and your buttony bear!
Know this icke baby, that whatever we go through in life, know we have eachother. We got this. Strength grows with love and our family is full!
Motherhood is such a mix of emotions. Mostly full of joy, pride, and love. Each day is different, some you find that you are on top of everything i.e the housework, you’ve showered and you have maybe went for a walk and some days the house is a total mess, you haven’t showered but your baby is smiling, clean and fed.
Being a chronically ill mum, it adds a whole lot more into the mix! You ache, some days you can’t eat, you’re so exhausted from looking after a little human and the chronic fatigue. On the good days, however, you make the most of your day! Which is exactly what I did in the picture above. You begin to find your own routine, too, which helps you make a plan in your mind when you can take your medication and shower, which are the main important things for me. Self care is so important (I know, I ALWAYS say this, but it’s true!), and you need to remember to take time for yourself too, it helps keep you sane, relaxed and can benefit your mental health. I also try to get out for walks with Odin and our dog Biggie, when it isn’t too cold. On the days where I’m either too tired or sore to do much or Odin’s having a bad day, I may find myself being pooped on, spewed on, haven’t been able to shower and the house is a mess! It’s totally OK to have days like those.
The main downside I’ve found, from a combination of chronic illnesses and being a mum, is that you soon realise who is REALLY your friend. It’s a harsh, quick sadness that you may find yourself in more times than once. I’ve had friends turn out to be huge jerks after years of friendship, out of nowhere, or I simply didn’t see the signs. I’ve dealt with friends simply blocking me for standing up for myself, another was truly awful to me because I was hoping to have a girl in my pregnancy and others just simply not think of me and dont invite me to anything. You also realise what family truly cares about you, too. I’ve had many not bother to message and ask how Odin is or myself, some so excited for me to have a baby and meet Odin and i gave up asking them when they wete free with excuses and some didn’t even congradulate me when i announced my pregnancy. However, there is also the beautiful side of life, where you make new friends and choose your family! I’ve made such amazing friends with other chronically ill mums, have been blessed with still having friends from school around and the family I have now, are so supportive and loving that I consider Odin, Jaimie and I super fortunate. I like to count one blessing or good thing in each day, which helps me cope so much! For example, yesterday, we got out for a walk and spent time with family. The day before, I had a long soak in the bath and really enjoyed some me time.
In tough times, count your blessings and love the people who love you! The rest who don’t think about you don’t let yourself think about them.❤
Lately, I’ve had some negative comments about my pregnancy and it has been really hurtful. I wanted to be open about how many pregnant woman can often come across these situations and how to cope and deal with them as best as possible and to put yourself first.
Sometimes when people don’t know you, they often judge without knowing your struggles and the journey it has taken for you to get you to where you are. I am always very open and honest about my journey and the struggles I’ve faced but it is apparent that many don’t take the time to read that and make assumptions. They also forget that it doesn’t only just affect myself, but it also affects my family and my partner.
Just some of the things I’ve had is “she only got pregnant to get attention” “she is a pitty party” “she always goes woe is me” “she just did it to get likes on social media”. I’ve also seen comments about other woman, too such as “she doesn’t deserve a baby” etc. Some women get pregnant easily, some dont. It is not for others to decide how or why we got pregnant!
I have struggled with fertility since the age of 17 and in 2017 was told I would never have children. Fast forward to now after 5 misscarries and a surgical termination, I am 6 months pregnant that is an absolute miracle and blessing to my partner and I! We have had amazing support from family and friends even through these awful comments and this is where I am healing.
If you are struggling through hard times with hateful comments, find your healing in the supportive calls and messages from friends and family. It can be hard to see through it but never loose focus on what is to come – a beautiful baby completing your family. Don’t loose sight of what obstacles you got through and the journey you have faced! You are stronger than you know and we have all got this!!