A bit late to the party! However, my new YouTube series is now up and running after months of wanting to do it!
Once a month, I will be interviewing chronically ill parents, ostomates, those who suffer with mental health and also interviewing those who have struggled and do struggle with fertility. My first live stream was this evening at 7pm and will be edited and posted onto the channel to view at any time.
I thought it was important to highlight the struggles and achievements that chronically ill parents have throughout life! I know whilst I was pregnant, that there just wasn’t that support available and I’m hoping this can help other chronic illness sufferers and ostomates when planning to have a family, even if it is only just questions before thinking about conceiving. I also hope to help any mums out there who are pregnant and those who are already parents but just struggle with feeling alone in some aspects of their life.
I am aiming to do 10-15 interviews for this series, I will be kept busy! If you are interested in being interviewed, pop me a message on my instagram page.
I look forward to seeing how this goes and hope it helps some of you out there!
Oh my gosh, I’m now 27! Mentally I don’t feel so old, physically I feel much older (ha ha.) However it’s my first birthday as a mum and although I’m not all too eager to celebrate as it’s super cold, from having a rough time recently and due to not being so well, It’s something sort of special. A milestone, if you like.
Its almost 8am and Odin’s first nappy change and feed of the day is done so I’m taking the time I have now to post for my birthday and to also wish everyone a belated Happy New Year! Hogmanay was really lovely and we had a lovely time bringing in the bells with family and watching fireworks on the TV! Today, we plan to get a little foodshop, my dad is coming over to see me and then we are having Chinese.. yum! I also noticed there are quite a few things off of my wishlist, some that have arrived and others that I am so, so excited for them to arrive! I am so very grateful to friends and family for this. Although it is my birthday, I have gifted one of my friends over in America something for her little girl, off of her wishlist and I cannot wait for it to arrive! I also donated to a family over in America who have been struggling with their medical bills, more information is down below.
So, as it is my birthday, I’m asking anyone and everyone to donate to the families GoFundMe. Their little twin boys were born at 32 weeks, one with his bowels formed outside of his body and has undergone lots of surgeries and medical interventions as he has been so poorly.. I’ve followed their journey for a while now and the family have spent so much time in hospital at a time thats meant to be filled with joy, met with the fear of the unknown and watching their baby be so sick. You can follow them on tiktok for updates and the dad does do a live stream when he can, to let everyone see the babies and update everyone who also follows their journey.
I know its difficult times so if you can please do by clicking here, if not please share. I know they will appreciate any help given especially as the Dad is a retired Veteran.
Here’s to 27 and hopefully this year brings more happy memories, easing of Covid and to watching Odin grow more each day!
Christmas 2021 has been amazing! Odin’s first Christmas and my first one as a mummy! We were truly spoilt from everyone.
We spent Christmas and boxing day with my in laws and the doggies, watching movies, listening to music, eating good food and opening presents, it was such a fab two days! My stomach and c section scar has been quite sore and my Fibromyalgia along side hyper mobility syndrome have been causing me to ache quite a lot which has been making me super tired from the insomnia and being a mum too. Soaking in the bath helps A LOT and I rather this approach than pain relief as it makes me so drowsy and gives me such a sore stomach. I also got an electric heat pad for Christmas so that will be lovely to use tomorrow whilst relaxing! Hopefully it helps with my pain, too.
Odin got a lovely cot for his Christmas and so we will be putting it up in the next few weeks! He won’t be going into it for a good few months yet though, I love having him sleep by my bed side. He really is growing so quickly but at the same time it is so lovely. He’s starting to smile and talk and he loves to watch baby sensory videos, it’s super cute!
In terms of my stoma, each day is different. 6 years on as an ostomate and I still find my body changing, more so after having a baby! It is still numb under my stoma and it does swell from time to time but I do what I can to be the best mum to my ability and rest as much as possible. Being a chronically ill mum, the one thing I have found and therefore that is my advice to any other chronically ill mums is to rest as much as you can. Take a bath when you are able to, to help relax and for pain.
I hope everyone had a lovely Christmas! Here’s to 2022!
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!
This week I was sent samples of the new ModaVi bags to try from Pelican Healthcare! As promised, I would try them and write my review on my blog as well as sending feedback through the feedback link.
How do they feel?
Honestly the fabric feels amazing and soft, like suede! The flange is also super nice on the skin and very comfortable. They feel very light on the stomach when the bag is full too and the adhesive caused no issues and in fact, felt so lovely to wear around my stoma and on my paristomal skin. They are also fantastic to look at and definitely gives you a lot more confidence!
So for me, I found a few flaws with this bag (this is personal opinion and not the same for everyone!) I really do not like how the opening for drainage is at the bottom. Its really messy and fiddly because in order to clean it fully you have to open it at the bottom then stick tissue all inside a good few times before you can roll it back up again, a similar opening design as the Salts bags. When unrolled to go and empty, there was poo everywhere and leaking out the sides so my fingers got covered every time. I also didn’t like the flappy part at the top of the bag which is used to view the stoma underneath as it dangled around a lot. Super handy though, I admit, for being able to get a good clear look at your stoma and it also folds up for when wearing a Bikini or something similar! I also found that after showering, it peeled away but that could purely be because I am pregnant and have a lot more curve on my paristomal skin and may not be due to the actual flange itself so do bare that in mind when you have read this!
Over all the aesthetic of the bag is perfect and I couldnt fault that at all but practically it just didn’t work for me. The flange is the best part, due to how healthy it made my skin and it just felt so good whilst on!
I still definitely prefer the opening draining design on the sensura mio bags by Coloplast as they have an extra part where the poo runs down and its so easily wipeable and takes a lot less time, toilet roll and no fiddling about what so ever. As always, different bags work differently on every ostomate so please do not be put off from trying them!
Thankyou so much Pelican Healthcare for sending me them and so quickly too! The bags I have left over will be donated to The Jacobs Well Appeal.
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.
It’s been a while since I gave you all an update! My laptop got completely rebooted by my friend John who used to work in a computer shop and now fixes computers etc in his spare time. So even though my laptop has been fixed you’re probably wondering why I haven’t been blogging! For the past few months we had been preparing to move so we had to clear out E.V.E.R.Y.T.H.I.N.G because I had way too much stuff!
We have been in our new place a week past Sunday and we are absolutely loving it! What had drawn us to this place the most was that there was a bath and shower separate in the bathroom and there is no big garden so we hadn’t the need to to cut grass as we struggled with that at the last place. To start with at the new house I really struggled as just three days before moving I had dislocated my knee cap twice so I had this awful leg brace on and I couldn’t walk properly (it’s still causing me pain.) The bath has been absolutely lush and I have been using my bath bombs! We had another few hurdles to bypass whilst moving which included my huge bedroom wardrobe having to be taken to bits and rebuilt and other minor little things. The dogs have settled in so much better than we expected too which has been great. The best part though is not living under temporary accommodation anymore and having anyone with issues living above and also not having a party animal living above making my life an absolute hell anymore.
My health is up and down at the moment.. stomach pain has been quite intense, my reflux hasn’t been great with frequent heartburn and feeling sick, my headaches have returned again, joints are not so well and I am super exhausted. Stoma wise I have been having A LOT of bag leaks. Luckily I haven’t needed to visit the doctors since my knee dislocation but who knows how long that will last – all chronically ill people know the drill with that! Emotionally it has been a really rough ride through 2020 so far and I got to a really bad place where I really was not coping after loosing my Aunt Nina, and old school friend and an old work friend. Hopefully though this is the start of a better period of time with two friends expecting baby girls I am super excited for them to arrive!!
So for now, my time is spent playing Animal Crossing, trying to sort out the new house, resting and catching up with Family and Friends. I have been told due to my Hyper Mobility Syndrome that dislocations are very common and it will more than likely happen again (but im going to hope NOT! Its so painful.) Today it is SUPER cold so I had a shower, got back into my P+J’s, put on harry potter and my partner and his sister are baking some goodies including my favourite – chocolate sponge cake with cream!! I hope you enjoy your day ❤