Awareness, Chronic Illness Blogs, Life With A Stoma, Personal Blogs

World IBD Day 2020

Today is #worldibdday! This will be a brief post as I am writing this on my phone (my laptop broke after 3 faithful years!)

Today we celebrate world IBD Day all around the world and raise awareness of Inflammatory Bowel Disease. You will see many posts today of people sharing their story/journey or sharing about their loved ones who suffer from IBD! Share the love, ask any questions you are interested to know the answer to and share!

Many amazing charities now exist to help those with IBD or ostomates! The three charities that have helped me SO much with support over the years is: GetYourBellyOut, The Purple Wings Charity and IBD Superheros – all of which have various social medias and facebook groups.

Today for me, I celebrate the friends/family I have met due to sharing our illnesses in common – including my fiance! There are SO many that I could not live without and life really would not be the same without them. So this is a shout out to all my IBD besties who make life worth living, the bad days better and the littlest of things the funniest even when they have been so unwell and in pain themselves!

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, Uncategorized

The Blue Badge Scheme

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The Blue Badge scheme is a disabled parking permit but more commonly known as a disabled badge. This is where a blue badge is visible in your vehicle window to allow you or the person transporting you to park in disabled parking spaces.

How to qualify?

I’m asked this question quite frequently, as recent as just last month. It’s difficult to know if you are eligible and how to get one so I gathered my information and will pop it down below (please note that some councils policies on your eligibility can differ so always consult them):

  • If you are under the age of 16 and have a letter confirming your eligibility from your visual impairment team (eye care specialists.)
  • if you are 16 or over and you are registered as visually impaired.
  • if you are receiving the higher rate of mobility component from DLA (Disability Living Allowance.)
  • if you are receiving PIP (Personal Independence Payment) and have scored 8 or more points in the ‘moving around’ in the assessment.
  • if you are receiving PIP (Personal Independence Payment) and have scored 12 points or more for the ‘planning and following a journey’ in the assessment.
  • If you are receiving ‘war pensioners’ mobility supplement.
  • if you have gotten a ‘lump sum payment’ from tariffs 1-8 of the Armed Forces Compensation Scheme.

If you have any of the above then you automatically qualify for a Blue Badge! If you don’t then click here where you can do an eligibility assessment online. You will need your national insurance number for this if you have one.

How to apply?

You can apply directly through the link up above or you can call your local council and request this to be done on your behalf over the phone and then visit your local council with documents to prove your identity, address and proof of benefits you are currently receiving such as :

  • a utility bill
  • passport
  • drivers license
  •  birth certificate
  • council tax bill or government letter
  • letters from DWP of your current benefits
  • a recent passport sized photograph (for the badge)

Once you have done this, the process time is usually 12 weeks but depending on your local council it could be a little longer, they will email you to let you know! How you pay and how much you pay also depends on who and where is your council for example in Scotland it is £20 and in England it is £10 and for wales its completely free.

What are the benefits of having a Blue Badge?

Having a Blue Badge can be very beneficial if you are disabled such as parking at on street parking meters, parking in pay and displays, parking at disabled parking spaces and on single and double yellow lines if there are no loading restrictions (all of these are completely free!) This does not apply when parking at shopping centre car parks, hospital car parks (if they charge) and super markets (if they charge.) You can also use your badge all over the UK and abroad, in England and Wales you must use a parking clock.

Displaying your Blue Badge

It is important to display your Blue Badge so that when near your vehicle, someone can see it clearly from outside the vehicle and the front of the badge must be facing upwards showing the name of your local council.

If you have any issues with losing your badge or it has been stolen please contact your local council ASAP to get this resolved. Please also note that giving your Blue Badge to someone who is not entitled to one or is not helping you can be charged with committing a blue badge fraud and fined up to £1000 EVEN if they are family or friends. DO NOT buy your blue badge anywhere online where it states the price is £49 as there are SO many fraud websites scamming people and are fake. If you get a fake blue badge you are also at risk of being fined up to £1000.

I hope you found this useful in answering your questions about the Blue Badge Scheme!

Awareness, Chronic Illness Blogs, Life With A Stoma, ostomy fashion, Stoma Wear Brands

Ostomy Fashion – Best Buys

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Many ostomates dress differently due to two things; fear of the bag showing and losing confidence. I asked some ostomates their favourite pieces of clothing to wear when dressing with a stoma, at an affordable price, as let’s face it – we aren’t made of money! (Picture above, I got my dress from SHEIN for £15!)

I admit, when I first became an ostomate back in 2015, it was summer and I had no clue what to wear (I was just 20 years young at that time.) I was fearful of my bag showing, my scars being visible and I lacked all that confidence I once had before I got severely  unwell. I am here to tell you that you CAN wear whatever you want or feel like wearing – whether you want your bag to be concealed or on show! There are two of my favourite ostomy wear companies that you can get briefs that hold your bag in place such as Vanilla Blush which focuses on being sexy at the same time, and for hernia support there is Comfizz which are more practical than sexy but work excellent!

If you are a new ostomate reading this, welcome! Here you will find some great buys from fellow ostomates and hope that this helps you. Feel free to get in touch should you need any more advice! It is a lot to take in, but take it day by day and relax, cus’ we got you covered in the clothing department <3.

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First up we have the lovely Amy also known as the IBDWarriorPrincess who is also my friend and a blogger for Comfizz! “My Style since getting a stoma has changed, but for the better. Now because I can maintain my weight and actually go out. I look forward to going clothes shopping and dressing in the clothes that I love! I swear by high waisted garments because they don’t restrict my ostomy or stop it from it’s normal functions. My favourite go-to outfit is a tight top and a skater skirt, especially on the days where my stoma is more active!” This Jumpsuit was just £12 from Newlook.

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Nicola also known as Beauty and The Bag, is not afraid to have her own sense of style with her ostomy! As a mum of 7 she looks fantastic! “I get pretty much all of my clothes from boohoo and absolutely love the styles I can create! I don’t dress around my stoma or try to hide it.. I wear whatever I feel good in and I like to look a little unique and stand out.”

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Lisa who has her own ostomy fashion instagram account lisakateostomate, sharing other ostomy fashion and bargain buys! Lisa has really struggled recently due to being on steroids to try and help her Chronic Illnesses with her weight, but doesn’t she look amazing! ” Always have shopped at primark, quiz and new look. My go to shops for my clothes and they’re all true to size. I’m usually a 12-14.” We think you look lovely whatever size you are Lisa.

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Jess is no stranger to an ostomy as this isn’t her first once after a failed J-Pouch! Jess finally got the chance to dress up for new year this year after being in hospital on and off for the past few months. This dress is from I Saw It First retailer at £25. She also has an instagram account that you can follow her – jessgoldstraw.

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Sandie loves her comfy trousers which she bought from TK Maxx at just £19.99! “I have made many purchases but I am so glad (more so) on the purchase of these trousers which got me through the first few weeks after surgery.” And I agree definitely a bargain buy!  You can follow Sandie on twitter – sandicookartist.

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Sophie who is a mother of one and is the face behind the ostomy clothing brand I Am Denim London models her own jeans here. Now these are on the higher range of ostomy wear so these do cost a little bit more. These jeans I would really recommend for those of you have a higher stoma! This includes men too! These are currently on sale at £75. Perfect for keeping you ostomy concealed if you are self conscious too (they have a waistband inside that is adapted so you can still empty your pouch without having to undress!)

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Last of all is my bargain buy! These ex Zara jeans I got on ebay for £6.99! I have a low stoma so these cause me no issues on rubbing on the stoma or when my bag fills up. They are super stretchy and soft. I have no issues having my stoma on show or hidden, however when wearing jumpsuits or dresses, I do wear my Vanilla Blush briefs to keep everything in place!  You can follow my instagram – glitterygutsx 

Let me know what your bargain buys are OR your favourite outfit with a stoma! Feel free to tag me on social media so I can share with the rest of my followers!

Thank You to the girls who participated in this blog piece, in hope to help new and old ostomates!

Awareness, Chronic Illness Blogs, People's Stories!

Aberdeenshire Barbers Volunteer at NHS

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Two barbers from Hombre in Aberdeenshire, Liam and and Brandon have been assisting the elderly and ill patients at Aberdeen Royal Infirmary once a week.

Liam Robertson (23) who has been there for 4 years, came up with the idea to assist patients at ARI that are unable to leave the hospital with Brandan Milne (18) who started a year ago. Liam reached out to the hospital about volunteering at the ward, as they are off from the barbers on a Tuesday. They now spend their day off at the hospital giving haircuts to patients at the green zone. Liams main purpose and what strived him to start volunteering was to give back to those in the community who can’t manage to get anywhere especially their barbers shop and felt he was the man for giving back!

“I felt this time of year it’s important to help those that either don’t have families or can’t see them due to age/illness. The patients were elderly, the smile and extra enjoyment after having a chat with us and feeling normal again felt amazing. Our plan was to try make them feel relaxed and trying. To take their mind off things for a little while.”

The two men take their own supplies and make their own ways to the hospital for 11am, finishing at 4:30pm. Through the day, they see patients who are unable to leave the hospital and struggle to maintain with simple tasks that many of us can do without any problems and take for granted, including keeping up with their hair and facial hair. Nurses care for their patients every day with medicine, clean bedding and assist with washing however they are so stretched with time and funding that it is not possible for them to hire a barber or take patients out to a barber for the patients who are able. Not only are the nurses at the ward very grateful and appreciative of Liam and Brandan’s selfless and passionate work every tuesday, many other social media pages have thanked them!

When I asked Liam what was the best part about the day, he said how the mood and atmosphere changes of the patient’s from when they first arrive to the end of the day – “everyone had that extra kick and they became very warming.”

I think this is absolutely fantastic and patients can have such a confidence boost, as a chronic illness sufferer I know how difficult it can be being stuck in hospital and I know fellow chronic illness sufferers can relate! It’s also fantastic to see the young part of our generation spending their free time helping those in need.

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NHS Grampian Acute Sector 

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Fubar News

Friends and family of the two men have also shown their support via social media platforms, as well as family of patients!

To anyone who has thought about doing something similar or are young and haven’t yet thought about volunteering, Liam says the following: 

“I strongly believe we’re all far too caught up in our own lives and it is time that we start giving back, even with something small. Doing something small will make a massive impact in someone else’s life. It’s nice to be nice!” 

Awareness, Mental Health Blogs, Personal Blogs

Christmas Wishes

Hello everyone, it’s been just a wee while since I updated you all about my health and everything else in my life! So here goes;

Mental Health

So many who follow my social media will know my mental health hasn’t been so good. You will think “is there a particular reason or trigger?” The answer to that is yes. Myself and Jaimie have had a very hard past few months financially which has been extremely stressful. Last month I sadly had a miscarry and not long after that, I had family members treat me like absolute dog poop due to not having money to attend a baby shower before hand – it got really nasty and my mental health has been spiralling downwards ever since. This isn’t because of the lies they said to me and about me, just more so that they felt the need to directly be nasty towards me rather than just be quiet and leave me alone with their negativity. Anyway, I see my doctor next week so I can try yet another medication for my Anxiety and Depression.

I get so scared over the silliest of things such as the shower curtain being closed, the door not being locked and when Jaimie isn’t in the house I feel panicked. I am barely sleeping and sit awake all night and lucky to get a nap in the morning without someone knocking on the door (usually post that sort of thing!)

Chronic Illnesses

The fun part, I wish! My wound where my rectal stump had been, is a real pain in the ass – pun intended!! My fistulas have been leaking and giving me infections which is super sore, my Tonsilitis/Tonsil stones won’t clear and my wisdom teeth keep getting abscessed (currently on the waiting list as urgent to have the four of them removed.)

My arthritis of course has flared with this cold weather so most days I need to use my walking stick and last week I had an appointment at ARI so used the bus, BIG mistake. I really struggled with sickness and my joint pain was just exhausting so Jaimie came to pick me up after offering to as he knew I was struggling.

I continue to fight the constant fatigue whether I manage to sleep or not and have also been in and out of hospital recently with my chronic migraines, sickness and wound problems. I’m also waiting for a capsule camera endoscopy to find out what is wrong with my small bowel and stoma which is four months overdue.

Charity Volunteering

I have done quite a bit of charity volunteering via social media this year!

I have just made a hamper in aid of GetYourBellyOut to raise money for those who suffer from Crohn’s Disease and Ulcerative Colitis, it’s almost finished! I also did the photography for the charity ball in April this year when my friend Hanna took really poorly and was admitted to hospital, thankfully she was okay and recieved really good care. We will be attending the ball next April again to see some of the most amazing people ever including my best friends Levi and Steph!

I have been collecting donations for Street Friends Aberdeen charity who help the homeless of Aberdeen, run by volunteers making them warm meals a few nights a week. (If you would like to help please click here for the items list.)

You will remember earlier this year in March, I took part in a charity photo shoot for The Purple Wings Charity Calendar where I raised almost £600 in sponsors and by auctioning off items for the charity. The calendars are now on sale for next year and can be bought by clicking here. It was great fun!

Everything Else

A lot to take in right?! I know it is a lot, sorry! This saturday we get our first ever real christmas tree! Most of the christmas presents have been wrapped up for everyone, just literally one or two left to wrap and that is all done yay! The dogs are all doing fine and have been squished up to me or on my knee giving me loads of cuddles whilst I have been poorly. They always seem to know how to make me feel comforted, bless their little but big hearts.

My Christmas Wishes

Lastly, my wishes for this christmas.

  • Have tests done
  • Be seen in the IBD clinic
  • For friends and family to have a lovely christmas and new year
  • More donations for Street Friends Aberdeen
  • Get my GetYourBellyOut volunteer shirt!
  • Not end up in hospital
  • To be well enough to enjoy christmas day without being tired and being able to eat Christmas dinner without feeling sick

Seems silly christmas wishes to many but for me, it’s big wishes.

What’s your christmas wish(es) this year?

Awareness, Chronic Illness Blogs, Life With A Stoma, Personal Blogs

BBC Radio Brain waves

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After talking with the lovely Pennie from BBC Radio Scotland, we had a cuppa at my home and recorded some conversations on topics for the Brainwaves Podcast edition for Series 7 in 2020.

In Pennie’s Brainwaves series, she explores the science behind our everyday experiences and shares this with scientists who work in Scotland. The first series which started in 2014, covers topics such as Edinburgh Science Festival, Obesity Figures in Scotland. Series 2 covers topics such as how sounds affect people, meeting and talking with scientists and professors and meeting Karen Vousden, director of Cancer Research. Series 3 covers topics such as Biometrics, The Psychology of Cheating, Donating your body to science and The Flu virus. Series 4 covers topics such as The Northern Lights, Antimicrobial Resistance and the Anatomy of a stroke. Series 5 covers topics such as The problem with plastic, The Invisible Disease and Child Tissue Donation. Series 6 which covers various topics such as Food For Thought, Street Drugs and Pain.

Series 7 which is set to be released early 2020, is currently being recorded. Subjects include a shocking insight into the prevalence of perinatal PTSD, a real eye opener on what might be the next big environmental pollution issue plus a few good, bad and ugly facts about fat.

I am VERY excited for you all to hear our one which covers many subjects! When it is published, I will make sure to update you all!

 

 

Awareness, Chronic Illness Blogs, Mental Health Blogs, People's Stories!, Personal Blogs

The Mental Health Taboo With Pregnancy

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After watching Loose Women, a celeb dating star Anna Williamson talked about her mental health before pregnancy, during and after the birth of her first child. Anna was extremely brave in talking about something that society has a set perspective on when it comes to pregnancy and having a family which is that pregnancy should be the most exciting and amazing time of your life. But that isn’t how it is for many who suffer from mental health conditions.

In my blog IBD – Pregnancy/Termination I talked about my situation when I became pregnant after being told I would never be able to get pregnant and to help other women in the same situation I was in which was that I was told this information based on opinion and through no fertility testing. However I never talked about the emotional impact this had and STILL has on me. It’s hard, and that’s putting it lightly. Since then I have had another miscarry and I am desperate to be a mum. They say to look at that silver lining and for us, it’s that I know I can get pregnant now!

I spoke to women and men who also felt that mental health had a big role to play prior, during and after pregnancy;

 

Kellie

“It felt like I was going to fail as a mom. When I was pregnant over three years ago, four months before falling pregnant I had my stoma operation. My surgeon was very concerned which made me concerned and panic. There were regular what ifs and what if this baby didn’t make it  as I had had 5 miscarriages. At ten weeks, my whole life was on pause as they didn’t know if I would survive, they diagnosed me with a brain condition and I went blind for three months. I was in such a dark place I didn’t know if I was going to make it, I kept asking myself was my baby going to make it, or if we did pull through how would I cope being a mom with a new illness on top of the illnesses I already have!”

“Pregnancy was no walk in the park for me, and I couldn’t be alone. I was scared to be left alone so my partner would come to the hospital everyday and be with me from 7am that morning till 11pm at night. I had to stay on the phone to him all night just to try and stay as calm as possible. I was also on different types of medication as they didn’t know if the baby would come out addicted to the medications or not. I wasn’t on medication by choice, I was on medications to try and survive and for the baby to survive. I had open brain surgery at 20 weeks pregnant and I honestly thought when I was being put to sleep that it would be the last time I would see my family. I didn’t bond with my son for a few months and unfortunately, it took longer for me to bond with him as all I did was sleep and eat. My partner actually had him the majority of the time after major bowel surgery, being ill, open brain surgery and being a new first time mom. Delivering conor I was all over the place between hormones. I really didn’t know if I was coming or going. When I got better and when I was allowed to go home, I was close to my due date and I kept having panic attacks thinking something was going to happen to the baby or myself. I couldn’t sleep, I was restless, I was alone.”

Laura

“I’ve been on maximum dose antidepressants for depression and anxiety since the age of 14. When I became pregnant in 2010, I was seen at the hospital regarding my medication. They advised me to either come off my medication or to switch to one that would have less effects on the baby. My anxiety told me to stop my medication completely, I couldn’t bare the thought of any medication having a negative impact on this little person I was growing. The first few weeks weren’t too bad, I found myself either feeling on cloud 9 and the happiest person alive or I then felt myself pushing everyone away and isolating myself. I kept blaming it on pregnancy hormones and carried on as I was. My baby was born prematurely in April 2011 via emergency caesarean. Nothing prepared me for that, and especially for what was to follow. I blamed myself entirely. I blamed myself for my tiny baby being in high dependency. I felt like I had failed him, my body had failed him, and for weeks I bottled these feelings up and tried my hardest to embrace my new role as a mother.”

“When I finally brought my baby home, I made sure he was clean, fed, loved and my god did I love him. But there was always this overwhelming feeling inside that I wasn’t good enough. I truly believed that I didn’t deserve this baby and didn’t deserve to feel happy. I told myself I didn’t love him enough. I struggled in silence for 6 months before admitting that I needed help. I openly told my doctor “I can’t do this” and the GP put me back on to antidepressants. It has taken me so long to accept that I need these tablets to function and to stabilise my emotions. It has taken me so long to accept that I was and am worthy of this special boy. I am no longer ashamed of my mental health issues and I need to take these tablets to make life easier for me and keep those intrusive thoughts at bay then I do! I was also so in love with him but I remember those unwanted and intrusive thoughts creeping in, telling me I wasn’t good enough for this and that I didn’t deserve this beautiful baby boy.”

 

Danielle

“Before I fell pregnant, apart from the desperation and obsession with becoming pregnant, my mental health was quite good. I was always able to control it and get on top of it myself. Never felt I needed to seek much help and always dealt with life’s shit pretty well. But it’s like something changed in me when I became pregnant, I was petrified of losing my unborn baby! SO petrified that I was adamant it was going to happen.
I didn’t really enjoy pregnancy much until 20 weeks. I don’t know why but that 20 week scan made me feel like I could breathe a bit and my unborn baby boy was healthy and he was actually going to be OK. But that horrible anxious feeling never fully went away, I think that’s because I didn’t have a lot of trust in my body, seen as though it had thrown a chronic illness at me out of the blue. Despite all my concerns and issues, besides initial worries from labour, he was a healthy baby boy. I don’t know if my pregnancy anxiety is to blame for my mental health declining once I had him. He had Cmpa ( a food allergy caused by the baby’s immune system reacting to proteins in cow’s milk) from birth so we had our issues and battles which was never easy. He wasn’t diagnosed for weeks and I felt like I was losing an uphill battle with medical professionals. I struggled so much from early on because he screamed, a lot, and wasn’t a happy baby. I felt so stressed and angry All. The. Time, A time that I was meant to be enjoying my new baby boy it was awful some days.”

“Even though I wasn’t alone I felt very alone, very scared, both judged and a very bad mum! I was petrified to talk to anyone about how I really felt incase I was judged! I was so scared someone would take my baby off me and think he would be better off with someone else. I did go to the Drs a few times, trying to explain how I felt but I kept getting dismissed and I lost faith in them. Eventually, nearly 2 years after having him! 2 whole years, I felt like I was losing my mind and I wasn’t a very nice person to be around. I couldn’t control my anger or my emotions. I felt so lost and so far from myself it was unreal! I took my sister to the Drs with me who thankfully listened. I self referred from there advice to try CBT. I give it a good go, I tried a few appointments and stuck to it, but still felt myself sinking. My son was well over 2 now and he deserved so much more than what I was giving him! So I went against everything I once believed in, and asked for antidepressants. I was scared of those because I didn’t want to feel numb, I didn’t want to be emotionless towards my son or partner, but I NEEDED something and fast. So 11 months I have been on them now, and my God what a difference!! I’m quite saddened to think I lost myself for so long and got such an important chunk of my little boys life, and I know, which is also proven, that my mental health WOULD of had an effect on him because I left it too long. But I pray and I hope with everything in me, I have time to reverse any damage and soon enough, before the years out, I’ll be medication free and coping OK. Nobody tells you about this part of pregnancy and being a parent, not peppery. You never expect it to happen to you. But it can happen to anyone. And please don’t do what I did, don’t try cope and don’t ignore it. Ask for help, no-one is there to judge you, only to help you.”

Zoe

“My experiences with a newborn – I went into it expecting it to be the most amazing and wonderful experience in the whole world: especially after all the ivf and how longed for our baby was, I thought it would be magical. And don’t get me wrong, it was wonderful, but wow it was so hard too! The physical exhaustion of having a newborn affected me more than anything. I was breastfeeding for the first 2 and a half weeks, and he would feed constantly. And I mean constantly. There was no physical time left in the day for me to sleep. I was beyond exhausted. I was losing control of my mind, I felt like I was ghosting my body, like I wasn’t there. I felt like looking after my baby was a chore. I didn’t feel like I could enjoy even the cuddles. It wasn’t until I started bottle feeding, where Harry actually enjoyed being put down, I could actually sleep, and I got my sanity back. When he was breastfeeding, he would only settle on me, he would only sleep on me. It was relentless. I didn’t want to tell anyone, I felt like I was failing and I had to keep my front.”

Debbie

“I have recently had 3 miscarriages, and during my pregnancies with both my daughters in 2007 and 2008, I had strep B with severe sickness. Due to severe depression which I was diagnosed with in 2009, my two girls were taken away and have been adopted. I found it hard to manage simple things like cooking, couldn’t eat without being sick so ended up being anemic for a while, I couldn’t get much sleep as I was always lay awake worrying. Due to this awful experiences, I have ended up not trusting professionals and I still don’t. I was always worrying something bad was going happen and this has affected my mental health long term.”

(this gentleman is being kept anonymous) 

“I find men don’t know what to expect during pregnancy, and I personally found that when going into the hospital with my partner, I was ignored by the staff. They don’t tell you what to expect or how it’s going to be. When we had my youngest, my partner was on gas and air and I sat there doing nothing until she went into labour, nobody talked to me or said what to do or helped me cope with it all. I think because we aren’t the patient, we are left to it which I think is unfair as it’s an experience to go through together as a couple.”

Amy

I have never been very maternal, yes I wanted children, I wanted one each a boy and girl, but for me I had to be a lot older, successful and married. Obviously fate had a different idea. I fell pregnant 3 months after dating my boyfriend, it was mid Jan 2015 when I found out. I had just landed a full time permanent job and this really put a spanner in the works. It was a shock, this wasn’t planned and I didn’t know my boyfriend that well enough either. Even though my pregnancy was a shock, I knew then and there I was sticking with this pregnancy. My boyfriend however wasn’t so keen on the idea. I broke the news to my parents and apart from an initial shock the next day they both supported me with whatever I decided. My boyfriend took a whole week to tell his parents and they weren’t thrilled either. Back then I think I should of left him as the warning signs were all there.

My pregnancy wasn’t easy at the slightest, I’m 4ft9, I was about 5 and a half stone then, so growing a baby left me in a lot of pain. I was sick constantly and was back and forth in A&E as I was so dehydrated and had constant drips to help with that. I had sickness throughout until I actually went into labour. My boyfriend came to terms with things but wasn’t at all in the slightest encouraging. He came to most of the scans, as did my family but he wasn’t overwhelmed with emotion like we were. Anyway we got prepared and minus the sickness and needing constant growth scans, (as for a while baby was growing quite small) things were fine and dandy. My due date was 4th October 2015. I got told I wouldn’t be on time and would be late, however on the 14th September, I was getting a lot of pain and started bleeding. On the 15th pain was worse and my mum decided to time them and low and behold I was actually starting labour. The labour ward got me in when my contractions were about a minute apart and after a quick sweep and realising I was already 4cm dilated, I had a birth pool running and we were in hospital. 16th September 2015 at 7:56am my daughter was born at a beautiful 6lb4oz. Apart from being a bit blue and mucusy she was fine and after 24 hours we went home. This was when things went bad. My partner moved in with me in my parents house, but they just couldn’t get on. He hardly helped with our daughter and at this point I became quite poorly myself as was having a lot of stomach pain. It got so bad at one point I had to get an ambulance round. No-one could work out what was wrong so was put on some painkillers. Day 5 of my daughter’s life and after a few days of her being jaundice my midwife and health visitor told me to get her to hospital and myself as well as I was running a fever and not being well. So we did. We both got admitted in.

My daughter was poked and prodded with numerous tests and she was rushed straight to NICU as her bilirubin levels were dangerously high. We were told if they continue to rise that she may have brain or organ failure. We were told to expect the worst if things didn’t improve in 24 hours. She was put in all uv lighting. She had tubes going everywhere and the tiniest cannula ever. This was when my mental health went bad. My heart was breaking in so many ways. How can this happen? I’ve only had her in my life for 5 days, you can’t take her away from me now. Will she live? Will she have permanent problems? How am I going to cope? Why the hell has this gotten so bad? I was distraught and worse I was admitted in and until they can figure out what was wrong with me, I wasn’t allowed to be in nicu. I was breastfeeding so I needed to be there so I could do that. They allowed me for that reason but after 2 days my bloods came back saying I had an infection and while that was going on I no longer could be there. So I expressed. But I wasn’t making much sense, which then made me cry my eyes out as I couldn’t even do one simple thing for my daughter. The hospital was amazing. They made sure I was being checked on and keeping me updated constantly about my daughter. I had the mental health team round as my scoring was very bad so they sent the support, but I refused, I just wanted to be with my daughter. Her father hardly went to see her, he was more interested in playing his game or sleep. At one point he saw her for about 10 minutes and then went off with his family to get a pizza, not once asking if I needed anything.

My parents, especially my mum, were there being my support group that they always are, they made sure I was coping and being there with my girl while I couldn’t. They gave me things so I had her smell and she had mine. Regardless though, I still felt alone, so lonely, so lost, so hopeless, so frustrated and so very angry. I just want my baby home and well. Somehow a miracle did happen and after 2 and a half weeks we were home. We had another month of tests to make sure nothing creeped back but she was safe. But even being home my low mood didn’t budge. I instead worried every time she was asleep.

It is incredibly brave for these people to share their stories over the past few months and to share via this blog post. The main aim in sharing these stories is for those who are in similar situations with mental health whilst being a parent’s or parent’s to be to not feel so alone. It’s OK not to be OK at any time in your life! Just make sure to reach out and get the help and support that you need, whether that be in a friend, family member or medical professional.

Awareness, Life With A Stoma

Purple Wings Ostomy Calendar

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Earlier this year, back in March, I took part in a photoshoot with The Purple Wings Charity and some other lovely women for the Ladies Ostomy Calendar for 2020! This photo is of all of together after our individual photos with the lovely women from The Purple Wings Charity, Lauren and Paige.

I flew down from Scotland on the friday and stayed until the sunday and flew back home on the Sunday too. Louise A.K.A Crohnsfighting was a super ostomy Mom and picked me up from the Airport! The weather stayed good too.

It was such a lovely day! All of us ladies got to meet and have a chat and had our makeup done by the lovely Jasmine Stacey (you may remember her from her ostomy underwear line The Jasmine Stacey Collection), beautifully made buffet food which I definitely had too much of! and then we had our photoshoots done by Lisa the photographer who was so relaxed and kept everyone super calm as a lot of us were quite nervous!

Here are a few of my favourites from the photoshoot;

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If you would like to do it for next year or any of the years to come, go for it! It has given us ladies a much needed confidence boost and it’s an opportunity of a life time, full of memories I will never forget!

Awareness, Chronic Illness Blogs, Uncategorized

Where Did HIV and AIDS Come From?

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After watching the documentary about Freddie Mercury and the film Bohemian Rhapsody, I wanted to find out more about where the diseases HIV and AIDS came from. The impact that these two diseases have brought to people in several countries was and has been catastrophic.

Let’s talk about HIV and AIDS – 

HIV broken down is Human Immunodeficiency Virus which attacks the immune system and becomes AIDS, was first discovered in America in the 1980’s. At first people didn’t know what to call the disease and referred to is as ‘gay’ due to the fact that gay men were reporting to have rare diseases such as Kaposi’s Sarcoma and a lung infection called PCP which were linked to this unknown disease.

AIDS broken down is Acquired Immune Deficiency Syndrome and is the most advanced stage of HIV.  Someone with AIDS has both HIV and at least one of a specific list of ‘AIDS-defining’ diseases, which include tuberculosis, pneumonia and some types of cancer.

In 1983 the death rate from HIV was 16,500 which raised in 2006 when the death rate went up to 2,000,000. In 1999 scientists found a strain of SIV in a chimpanzee which was very similar to HIV which affected humans and it was then proven that HIV had come from chimpanzees after contamination from chimpanzee to human. But how did the chimpanzee get SIV? Scientists conducted even more research into how the monkey’s got SIV in the first place and soon realised that a chimpanzee had eaten two other similar and smaller monkey’s, in which each monkey had a different strain of SIV. Due to this chimpanzee eating two monkey’s with a different strain of SIV each, combined this turned into a third virus which can affect humans known as HIV.

So how did humans become contaminated with HIV from chimpanzees?

It’s thought that humans killed and ate the infected chimps or their blood got into contact with a wound or cut. There are 4 different types of HIV which include the groups M,N,O and P, the main strain that has spread throughout the world and is responsible for the highest rate of HIV infections is group M. The earliest that this was detected was back in 1959 where a blood sample was taken from a man in the origin of Congo. From this, we know that HIV first developed in Africa (Kinshasa to be exact) so the next question to answer – how did HIV spread from Africa? In the area of Kinshasa, there are many transport links such as the roads, railways and rivers. It also had an increasing sex trade around the time that HIV was beginning to spread which is believed to have largely contributed to the spread of the disease. This has resulted in racism and discrimination to those who live there.

People only became aware of HIV in the 1980’s when it was officially discovered as a new health condition. In 1983 the disease was given more research by researchers at the Pasteur Institute in France which discovered by the end of 1983 that the unknown disease was finally acknowledged as AIDS and that HIV was the cause of AIDS. It was also concluded that those who were higher risk of the disease were haemophiliacs (a rare condition that affects the blood’s ability to clot) and heroin users. HIV stays in the body for life, however treatment is available and can keep the virus under control and the immune system healthy. Without this  medication people with HIV can develop AIDS and is life threatening. If HIV is caught early and treated with medication, it will not lead to AIDS.

How can you can you get AIDS?

  • Vaginal or anal sex without a condom
  • if your partner has an unknown HIV status, a detectable viral load
  • Sharing injecting drug equipment
  • Oral sex

Treatment for HIV is a medication first started in 1997 which increases a person’s CD4 count and reduces their viral load. This means that those who caught HIV before 1997 developed AIDS and as a result passed away. Treatment is now so effective that it reduces someone’s viral load to undetectable levels within 6 months, maintaining them to have a healthy immune system and this means that they cannot pass on the virus.

 

 

 

 

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs

Weekly Vlog Content – That Crohns Chick Youtube Channel

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At That Crohns Chick Youtube Channel, we have some exciting content coming your way! In my new role as co-host to the channel, I thought it would be good to let you know  about what is new and what we plan on doing!

Live streams are 9:30pm UK time (me) / 6:30am South Australian time (Sharnii) where we talk about all things related to various types of Chronic Illnesses. We have covered topics such as :

  • Dating with a Chronic Illness.
  • Fibromyalgia.
  • Inflammatory Bowel Disease.
  • Ostomies (Colostomy, Ileostomy, Urostomy.)
  • World IBD day.
  • Irritable Bowel Syndrome.
  • Thyroid Awareness Week.
  • Autoimmune Hepatitis.
  • PSC / Liver Transplant.

In a few weeks, we will be expanding the channel and bringing you weekly blogs ” The Day in the Life of A Crohns Chick” which will show you an insight to how we live our daily lives, on the good and bad days, ostomy related, eating out with IBD or a stoma and much, much more! This is a good opportunity for us to let people who are not chronically sick, have a view of what it could be like which therefore can help them support those they know that are chronically ill. We will also be highlighting medications and what mental health can look like and also bringing you some positivity and laughter. This is also a chance for you to know us a that little bit more and what we enjoy.

We are looking at having more people on the channel with various Chronic Illnesses, so if you are interested please message  Glitteryguts or That Crohns Chick! We want to raise as much awareness of any type of Chronic Illness out there and look really forward to what is yet to come!