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?

🌺 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!

People's Stories!, Pregnancy and Baby

Danni’s Birth Story

Danni, 26 shares her traumatic birth story to raise awareness for other pregnant women.

Danni is one of my best friends whom I met through the Colostomy UK support group via Facebook. We have been eachother’s rocks through our pregnancies and everything that she has been through, we have gone through together! *please note any triggers before you read about trauma, surgery and birth*

About 2:30am on the 11th November 2021 I finally had enough of feeling unwell and my gut was telling me something was badly wrong. (For those of you who know I’m a Type 1 Diabetic and have been for 16 years now) I checked my ketones and they were extremely high which is VERY dangerous for a Diabetic let alone a PREGNANT Diabetic.

Josh (Danni’s husband) immediately called for an Ambulance who said that because I was still breathing, it would be a 6 HOUR wait and that I wasn’t classed as a priority. I then rang my family who rushed me straight into A&E and even though I explained my situation to the Receptionist, I was told it would be a long wait. Knowing full well I was in something called DKA by then, which again is VERY dangerous and life threatening.

I eventually got seen by Triage about 15-20 minutes later who understood my situation and quickly got me onto a bed in the main A&E bit of the Hospital. I had NOTHING done other than bloods and my health started quickly deteriorating (throwing up black stuff with blood in it) which I mentioned SEVERAL times to the nurses. Maternity didn’t even come down to do a check on Jackson even when I told them I hadn’t felt him move AT ALL for hours.

By about 9am my amazing Diabetes Team came to see me and noticed how ill I was, they then rushed me into Resus and proceeded to work on me trying to get me stable. Maternity came down and I will never forget my Midwife’s face when she put me on the baby monitor. Jackson was in severe tachycardia and I was also in pre term labour.

DKA (Diabetic Ketoacidosis) masks the normal symptoms of everything especially in Pregnancy. I was also in severe tachycardia so the Surgeons came down and decided to get me straight up to the operating theatre and do a Cat 1 C-Section which means a threat to life unless intervention can be done.

I had to have a spinal (where local anesthetic is injected into the spine) because it was too risky to put me under general anaesthetic, which I was kinda glad about because that meant I could have Josh by my side in theatre while they saved both mine and Jackson’s lives!  Myself, Josh and our families will be forever grateful that me and Jackson are now safe and healthy.

The reason why a full investigation is being done by the NHS and PALS is because the A&E staff should have done so much more, being busy is no excuse before someone comments that. The nurses were talking to eachother quite a lot so I know they weren’t rushed off their feet and when I was being violently sick they just stood there looking at me. I also wasn’t allowed Josh with me even when I was in critical condition.

Just wanted to share my story, I’m VERY grateful we now have our little family, I do have PTSD from the Trauma but hopefully that goes away in time.

Very proud of Danni to raise awareness of such a traumatic event in aid of helping others!