Personal Blogs

Difficulties I Have, As A Disabled And Chronically Ill Mom

Soaking in all those morning baby cuddles!

What difficulties do I face, being a disabled, chronically ill, mentally ill, and ostomy mom?

๐ŸŒบ 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 ๐Ÿ’ฉ

๐ŸŒบ when I’m vomiting; I must have my partner stay home to help ๐Ÿคข

๐ŸŒบ 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 ๐Ÿ’Š

๐ŸŒบ 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” ๐Ÿ’”

๐ŸŒบ 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 poorly๐Ÿฅต

๐ŸŒบ 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

๐ŸŒบ 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 ๐Ÿ˜ซ

๐ŸŒบ 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 ๐Ÿ˜

๐ŸŒบ 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!

๐ŸŒบ 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!

๐ŸŒบ 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!

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, People's Stories!

Trilogy of Chronic Illness Stories Part 2

Ashley’s Story

I grew up in Skye and then moved to Norfolk in 2002. I had a really normal childhood without any health problems until 2011 when I was diagnosed with Crohn’s Disease. I then had major surgery for a stoma in 2016 which was a huge shock to me but I am really glad I had this done. As well as being Chronically Ill I am also known as Genderfluid. Being genderfluid is really hard to explain, in simple terms I am me, both sides of ash are equally me, I hid this part of me of many years and it really affected my mental heath and I hated my body. This led to self harming and Depression. If you aren’t sure what Genderfluid means, it means that a person who is Genderfluid doesn’t go by a fixed gender so being male or female, they can be both hence the “fluid”.

I have had many challenges thrown at me during my life, the biggest challenge going through all the symptoms that comes along with Crohns Disease. The weight gain is the worst.. before Crohn’s I was 7 stone, steroids soon changed that! I’ve never been able to lose it and I’m 14 stone now. I haven’t always had the best care from doctor’s which I am sure many people with a Chronic Illness have experienced! I was on steroids for two years straight before a doctor mentioned Osteoporosis so a bone scan was booked and the results had shown that I had developed it in my back and hip from being on steroids too long. Another hurdle I’ve had to face is pain killer addiction due to the severity of the pain I was in daily, taking 50 pills per day just to get me through and attempt to help with everything I had going on. This wasn’t helped due to being handed stronger and stronger pain medication without any questions asked or a real pain management plan/checkup.

If I wasn’t Chronically Ill I would be making plans to follow in my fathers footsteps of a career in the army. I’m now 30 and luckily I have been blessed to have a daughter and I have a partner now who accepts me being genderfluid and we have been together since 2008. My girlfriend Helen has been there the most for me, everything that I have gone through, Helen has been there. I love to travel to my favourite places and so far I have travelled to Edinburgh and Lowestoft. I love nature, nothing beats the feeling and buzz of being truly lost in a forest surrounded by gorgeous trees and scenery. I am also a Christian which has helped me throughout life. Being Christian and Genderfluid is not a big thing to me, god made me as I am.

If you are struggling with any of the issues talked about in this blog please visit the LGBT Foundation, IBD Superheros or speak to your doctor who can offer support and advice. You can find Ashley on his instagram here.