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

Trilogy of Chronic Illness stories Part 1

Hey, My names Aron and what you see is what you get! I’m a happy fun loving going person but that’s just on the outside, on the inside it’s a different story…….if you are a frequent reader of this blog then you will understand about what I’m going to say next. I have Crohns Disease which is a form of Inflammatory Bowel Disease. In short some foods I eat give me a great deal of pain. I have another hidden condition called CSS – Centralise Sensitivity Syndrome.

CSS makes a selective group of nerves in your body over sensitive so its just really unlucky that CSS has chosen my bowels to attack, so this means anything that passes through my bowel e.g. food, liquid and wind gives me the most pain I have ever experienced but as always it will get better in time doctors say. However I will always be in some sort of pain as it is a life long condition.. Yes I’m always In pain and it sucks, I wake up in shock every morning it is slowly getting better with the new neurotic pain killers I have been prescribed. CSS & CD  work hand in hand unfortunately, so if I have a flair up it will cause me a lot more pain than the average person and it will last longer than a ‘normal’ day of pain. I feel embarrassed when I have to walk around with a walking stick, I know I shouldn’t but I do. I am young (24) so walking around with a walking stick at my age in public is hard. One day soon I will be able to walk without it, if not then I’m hopeful I wont feel embarrassed in the future.

I have a lot of support around me! My cousins have made a real effort to keep me company. Kai and me started playing the PS2 to pass the time, oh yeah sorry I forgot to mention I’m under home rest for the next 4 months! So this should be fun! The game we are working through is Lord Of The Rings Return Of The King. I’ve been playing some old school PS1 games like Bugs Bunny Lost in Time & Bugs and Taz Time Busters, too. Keep yourself busy they say! I have also got a PC/xbox one/Ipad/PS2 so I’m never going to be bored. I also will be doing a lot of researching on a editing software called Hitfilm – this will be taking a lot of my time up due to the fact I want to create a Platform or social media presents/group by making videos on my conditions. I’ll be doing a series of me telling peoples stories about the incurable conditions.

I haven’t suffered from CSS for long so what I’m going to talk about mainly comes from having Crohns. Being a male and having Crohns is challenging! In this day and age yes it’s okay to be male and sensitive but only online or in a support group. What about people like me who’s friends hold ‘banta’ to a high standard? They are ‘lads’ but that doesn’t mean they don’t care! They are my boys. Sometimes though there will be a comment made and I would have to bite my tongue because I’m a ‘LAD’ and get told to stop being so sensitive sometimes. Also shitting myself now THAT is not easy (well it’s easy enough to do it without knowing!) The worst time this happened believe it or not was when I was in bed in a nice apartment I was renting with a beautiful girl. Luckily she helped me clean it up and it only gets brought up when we want a laugh now. As time went on I think being a male and having this condition gets easier, well it did for me because I just accepted that no matter what gender we are, we are all going through something that can’t be cured and I shouldn’t feel embarrassed about anything. I can now laugh about me shitting myself with the boys due to their support. They are also really understanding if I’m on the toilet too long!

Just before I finish up here, I want to say that support is a massive thing no matter what you are going through. The one/two people who make it worth it wakening up everyday is my Mum and my Auntie, the support from these two is what I will always need but my Mum is the real rock star! She is the main reason I’m still fighting. She’s the most caring person (when it comes to family) and I’m so lucky that I have her to help me.

Arons Social Medias:

Twitterhttps://twitter.com/azzahodge

YouTubeDealing With It

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

We Have Moved!

Baux and myself settled in!

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 ❤

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!

Chronic Illness Blogs, Mental Health Blogs

Covid-19 With Chronic Illnesses

With recent news and articles left, right and centre, those of us who are chronically ill are in a state of panic, anxiety and fear.

The World Health Organisation and the NHS are the two BEST and most RELIABLE sources of information regarding the coronavirus also known as covid-19. There are many newspapers and online articles publishing unreliable information to the public through social media world wide.

So what is the advice given?

  • Avoid close contact with people out of your home
  • Wash your hands after touching anything even in your home
  • Using hand sanitizer in between washing your hands
  • If you are to cough or sneeze then please do so in a tissue
  • Wearing a mask doesn’t protect you 100% as these germs live in your nose but you can still wear one
  • If you have a high fever and/or cough with breathing difficulty then you MUST self isolate for 7 days
  • DO NOT go to your GP practice if you are experiencing a high fever and/or cough
  • Stay calm and keep in contact with friends and family through your phone and social media
  • If you are mentally struggling to call someone who can help over the phone.
  • Only go to A and E in the case of an emergency

It is so difficult for all of us who are chronically ill at the moment, more so because of how the media and people are reacting. It’s normal to feel scared and anxious as we do with any virus or bugs.

It is also difficult for all of the NHS staff who also have the fear and anxiety even in situations similar to this with treating patients with TB, HIV, AIDS and other infectious diseases. This is why we MUST follow their advice – they do this day in, day out throughout their training, placements and career to protect themselves from viruses and diseases on a daily basis.

I cannot emphasise just how important it is not to pay attention to click bait articles online. As stated at the start of this blog post – World Health Organisation and the NHS are the most important organisations for advice and updates.

If you are struggling mentally take some time to unfollow news article pages on your social media, if you find people on your social media are posting too much then take a break and some time out away from social media, you can speak to people through facebook messenger as normal or there is also whatsapp, Skype, facetime, discord and various other apps that are free to download onto many mobile devices and computers/tablets/iPads.

I hope anyone that has been affected directly by covid-19 recover and those that have been indirectly affected are OK and know that you are not alone.

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!

People's Stories!

Whats Your Story? Meet Double BagginIt!

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Danielle Gulden and Joe Teeters are IBD warriors and both have permanent ileostomies. They’re comedians, speakers and advocates for other ostomates and chronically ill people! 

Danielle has had Ulcerative Colitis (a form of Inflammatory Bowel Disease which affects the large bowel) for over twenty-six years, diagnosed at 23 years old (She was originally misdiagnosed with a gluten intolerance for 6 years prior to her UC diagnosis) After going through about every IBD medication available, going to the bathroom upto twenty-five times per day, she finally kicked her diseased colon to the curb in 2007. Upon high-fiving every nurse, doctor, and surgeon on the way to the operating room, she had a full proctocolectomy with end ileostomy. Her ostomy which she has named Stella, saved her life and gave her back her life! Danielle is very passionate about performing in theatre, travelling, being outdoors and eating cheese!

Joe has been living with Crohn’s Disease since he was just 19 years of age (a form of Inflammatory Bowel Disease which can affect the entire digestive tract) Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries and two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” (this is what people without a rectum call their once bums!) Due to Joe’s extensive and several surgeries, he has lost all but approximately five feet of his small intestine and has Short Bowel Syndrome (where only a small part of the small bowel is left.) Joe is also passionate about theatre but improv! He also loves spending time with family and friends.

Joe and Danielle met through an ostomy support group and realized that they not only had a similar health journey, but also shared the same sense of humor and positive outlook on life.  They became best friends, and soon after, Double Baggin’ It was born!  

Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease!  They believe in the power of humor, advocacy and awareness! They have recently done two podcasts with Healthevoices and Ostomy Guy. Danielle and Joe also won an award with The WEGO Health Awards for the category Hilarious Patient Leaders!

Doublebaggin It are available for speaking engagements worldwide!

You can find their social medias here:

Instagram- @doublebagginit

Facebook-Double Baggin It 

Healthe Voices Radio

Ostomy Guy

Chronic Illness Blogs, Mental Health Blogs, Personal Blogs

Fabulous Freebies!

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Good evening everyone! This blog post is about/links to some fabulous freebies I  had found whilst scrolling through the hotukdeals app on my phone!

To find the freebies, simply go onto the hotukdeals website or onto the app and click the ‘freebies‘ tab. There you will find loads of freebies such as apps, books, food, items, free games to download on various gaming consoles and PC and more. There were a few that caught my eye more than others because I knew they would be beneficial to people who either have a chronic illness, insomnia or have felt the burn of the recent benefit cuts. Bare in mind that when you read this a week or a month I have posted that the following might not be available anymore or the deal has expired so do keep an eye on the expiry date of the free offer!

So my eye catching freebie favourites!

Of course there isn’t just this website to get good deals, there is alo Groupon and Wowcher. They both do great meal deals and holiday deals MUCH cheaper than what you pay in the restaurant and at travel agents! Keep an eye for helpful apps I managed to get a painting by colour (not painting by colours brand) app where you can paint pictures like mandala on your phone and save them! Great for when insomnia strikes!

I will be doing more research to see what freebies I can get up for next week and will doa another blog post then! If you have any good websites to recommend that are alike – get in touch! Thankyou!

Personal Blogs

Here’s To 2020!

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Usually I would write about all the new year’s resolutions that I have like every other person, but instead, I wanted to talk about how shitty 2019 has been and what I plan to do in 2020 to make up for that!

2019 I went through a lot mentally and physically that seen me bed bound, riddled with infections, pain, reactions to medications and A LOT of toxic family members that caused me grief. We did however manage to attend the GetYourBellyOut charity ball where I volunteered and did the photography for the evening which I thoroughly enjoyed! We also went to the Enchanted Forest event with complimentary tickets which was lovely and the lights are gorgeous! The most awful parts were going onto antidepressants that made me severely sick and unfortunately we had a miscarriage. However it also gave me luck and I was finally put on the waiting list for wisdom teeth removal and to have my tonsils removed!

Financially it has been the toughest last few months I have ever experienced. We also almost lost the house and our gorgeous dogs. Luckily we are still here but have dreams of moving out this year as not only is the soundproofing terrible, I also have a really disrespectful neighbour who keeps having parties that terrifies the dogs and keeps us awake right through until the next morning. I cut off quite a lot of people and it has done us the world of good – I don’t feel so stressed anymore and don’t have to be treated badly anymore!

I also raised almost £600 for The Purple Wings Charity by being sponsored to do a calendar photoshoot to raise awareness of ostomies! I also collected donations for The Street Friends Helping The Homeless Aberdeen and we go there tomorrow again to drop of the last of what I have managed to collect (HUGE thank you to the community for helping me achieve this.)

So moving onto 2020.. of course I have a few nasty surgeries to have and procedures BUT with GOOD outcomes (hopefully!) I have said to myself that I will make up for all that lost time not being able to see friends and being stuck at home. We have the GetYourBellyOut ball in April to look forward to and hopefully we will also be going to the sea world in Birmingham whilst we are down there! I plan on taking my camera with me a lot more whenever I am out the house – the amount of pretty pictures I could have taken in 2019 would have been fab but I forgot my camera every time! I absolutely plan on a weekend or week down to Glasgow to see one of my best friends. We are also going to be attending the Purple Wings Charity Ball as we missed last years ball.

I also have made it an essential to save and get my passport so I can go abroad once or twice with my friend who models and can take a plus one! Unfortunately I will be selling my beautiful fish tank as I can no longer afford to keep it but the money will be put to good use and pay off some debts. I also have challenged myself to clear out my wardrobes of things I no longer wear either due to they don’t fit anymore or I just never wear them! We have some stoma supplies to donate to The Jacobs Well Appeal too so if you have any spare stoma supplies sitting around that you can no longer use – that’s the best place to send them to! We got a spa day voucher for our christmas so looking very forward to that after my birthday and a little scope around the shops to see what is on sale, I love a good bargain. One of my best friends gets surgery for an Ileostomy this month so will be making sure I go in to visit as much as I can!

So my main goals for 2020:

  • Move house
  • Get a part time job
  • Go on holiday
  • Pay off debt

Here’s to another year of being stoma confident and raising awareness!

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!”