# Mali and Me ## Posts - [It's been a little while...](https://maliandme.co.uk/its-been-a-little-while/): I’ve been more absent here on the blog then I’d intended to be over the last few months, but I’m still here – working hard! Over the last couple of months, I’ve had some very cool opportunities which I have been under strict secrecy with – but soon, all shall be revealed! It’s also been a few months of unexpecteds – medically, physically and mentally. I will do a better, bigger update, but for now, some flying updates. Hydracortisone – The replacement dose of the steroids has been much more pleasant to be on than the prednisone was. I am getting […] - [My Seat Ateca - 1 year on](https://maliandme.co.uk/my-seat-ateca-1-year-on/): How is it almost a year since I got my new Motability car already!? – time flies when you’re having fun. I am so pleased with my Seat Ateca, it’s a brilliant car for my needs and I can honestly say that I would struggle to be without it now. Having gone on my many adventures – and too many trips to the hospital, I use it almost daily. In the colder weather over the winter, the heated front seats became an absolute blessing – especially when my arthritis flares, and I benefit from warmth on my lower back. As we […] - [Let's talk vehicle adaptions - the Motability scheme](https://maliandme.co.uk/lets-talk-vehicle-adaptions-the-motability-scheme/): When I was applying for my Motability scheme vehicle, I had no idea of what adaptions were available to me, let alone the different types. As a young person, I have never had a vehicle fitted with adaptions before, and I couldn’t really find anyone online that I could look to for inspiration. A note on before we get into it It’s super important to note that you must ask for adaptions on your vehicle at the time of ordering. You cannot go back in retrospect and have them fitted. As far as I’m aware, the majority of adaptions available on […] - [How I Chose My Motability Vehicle (And What I Wish I’d Known Sooner)](https://maliandme.co.uk/how-i-chose-my-motability-vehicle-and-what-i-wish-id-known-sooner/): When I went to apply for my first Motability vehicle on the scheme as an adult, I wasn’t sure what to expect. I felt like there was a lot of guidance out there for people with physical disabilities, but much less for those with chronic illness. In case anyone else finds themselves in the same boat as I was, I wanted to share what I’ve learnt now that I’ve completed the journey of ordering, all the way through to getting my car. How do I know if I’m eligible? In my case, I was eligible for a Motability car because I […] - [When the Treatment Becomes the Problem: My Cushing’s Syndrome Story](https://maliandme.co.uk/when-the-treatment-becomes-the-problem-my-cushings-syndrome-story/): My name is Imali, I’m 24, a business owner/blogger and I live with a host of complex chronic health conditions — including ulcerative colitis, enteropathic arthritis, hypermobile Ehlers-Danlos Syndrome, and currently, steroid-induced Cushing’s Syndrome. - [I wanted to love these bags - Ostique Onovus Solo](https://maliandme.co.uk/i-wanted-to-love-these-bags-ostique-onovus-solo/): A few months back I was introduced to the new Ostique Onovus Solo stoma bags, which are marketed as the first silent stoma bag. As someone who has on more occasion received funny looks when I’ve bent over and my stoma bag has rustled, this idea sounded great! I popped over to the Ostique website and ordered myself some samples to try – promising myself I’d write a review for you once I had! As you know, I’m a believer brutal honesty – no rubbish here! Sizing and convexity – Ostique Onovus Solo: Going into ordering my samples, I was quickly […] - [Ad: How My Husband’s Handwriting Became My Favourite Necklace - Emily's Jewellery](https://maliandme.co.uk/how-my-husbands-handwriting-became-my-favourite-necklace-emilys-jewellery/): *Product was gifted. Earlier this month I was privileged enough to receive a custom necklace from a very sweet small business, called Emily’s Jewellery, and I couldn’t wait to share it with you all. This stunning piece is silver plated, delicate, and it feels well-made. I love that you can have a short phase engraved on it – in my case, I asked my husband to write a word by hand and then they transformed it into a timeless keepsake. The quality of this necklace blew me away. It’s lightweight yet sturdy, and the charm catches the light beautifully with any […] - [Left in Limbo (Again): Unresponsive Healthcare for Chronically Ill Patients](https://maliandme.co.uk/left-in-limbo-again/): Well here we are again… back at square one. After my previous post, talking about my experience with rheumatology not managing to find a treatment that works with my enteropathic arthritis, I was so hopeful. However, after an initial flurry of appointments and activity on their part, the progress we were making has dropped off. Again. In March, it was decided that following an anaphylactic reaction to Infliximab, I would be started on Adalimumab – an injection of a similar type of medication that may well have been able to get a grip on my inflammatory arthritis. I was started on […] - [Merlin and Bruno - 1 year post stoma surgery](https://maliandme.co.uk/merlin-and-bruno-1-year-post-stoma-surgery/): It feels surreal to be able to say that I am officially one year post surgery! Back when I was laid in that hospital bed, it felt like time stood still and going outside or leaving the hospital felt like a dream. Here we are a year later, and what a year it’s been! From an IBD standpoint, the surgery was a success and I don’t have any of the issues that I was having with incontinence, desperation or urgency. However, that doesn’t mean that it’s been all fun and games. The biggest challenge for me, has been the associated arthritis […] - [Winter Gardens Carpark - Bournemouth: An Accessibility Nightmare!](https://maliandme.co.uk/accessibility-winter-gardens-carpark/): This week, we celebrated international wheelchair day – a chance to think about the ways in which wheelchairs provide independence and how they totally transform the lives of those who use them. From powered add-ons to folding wheelchairs – there are so many options and ways to help you make the most of your mobility. However, with innovation, also comes accessibility limitations. Despite there being more wheelchairs users in the UK then ever before, much of the country simply isn’t accessible. This is frustrating and restrictive, especially when it stops you from being able to go about your day-to-day or puts […] - [Fighting for Care: When the NHS Fails Disabled Patients](https://maliandme.co.uk/fighting-for-care/): What happens when the very hospital meant to care for you leaves you fighting with unbearable side effects instead? For eight months, I have been battling Southampton General Hospital – not just for treatment, but for basic dignity and coordination of care. This isn’t just about me; it’s about a system that is failing countless disabled patients. And if we don’t advocate for ourselves, no one else will. Southampton General has been a lifeline for me over this past year with my worsening health and complex surgery. There are countless members of staff that I will forever be grateful to, who […] - [What Can An Access To Work Grant Pay For?](https://maliandme.co.uk/what-can-an-access-to-work-grant-pay-for/): Trying to find your way through the world of employment while managing a disability or health condition is no small feat. You may have heard of Access to Work (ATW)—a government grant designed to support you in the workplace. But, like many people, you might be wondering: What can an Access to Work Grant pay for? The truth is, while Access to Work is incredibly helpful, there’s very little clear guidance on what the grant can be used for. Having been a recipient of ATW myself in the last few years—and having supported many customers through Inkfire —I’ve seen it from […] - [No colon, still rollin' - My new wheels - Sunrise Medical Quickie Carbon Q50R](https://maliandme.co.uk/sunrise-medical-quickie-carbon-q50r/): 2024 has not been a good year for me health wise. Putting aside the usual ups and downs of Ehlers-Danlos Syndrome, having a perforated bowel, sepsis, major abdominal surgery, followed by an arthritis diagnosis and then an acute kidney injury thanks to Norovirus – it’s a safe to say I don’t have the physical stamina I once did. It became apparent that my previous manual wheelchair is not adequate – enter my new sidekick: The Sunrise Medical Quickie Carbon Q50R For context, my previous set-up was a lightweight manual RGK fixed frame Wheelchair, with a power adaption to use as needed. […] - [Working With Chronic Illness: Navigating a World That Wasn't Made For Us](https://maliandme.co.uk/working-with-chronic-illness/): This post was inspired by a recent conversation with a dear friend. We were discussing the pressures of work and health, and I realised I wasn’t only one feeling trapped between the expectation to work and a body that often refuses to cooperate. When society labels you as lazy In today’s world, productivity and the ‘hustle’ culture are glorified, especially among young people. If you aren’t pursuing your career head first, you should be starting a side hustle. If you aren’t working three jobs, you should be training for the next thing. It’s relentless. For those of us with long-term conditions, […] - [My Mucus Fistula Journey: Day-to-day life](https://maliandme.co.uk/my-mucus-fistula/): After my emergency stoma and ileostomy surgery in March 2024, I woke up with not one bag, but two. One is for my ileostomy and the other is for my mucus fistula. I’ve discovered that there is little information out there about mucus fistulas, and while not everyone with who has stoma surgery will need one, severe cases often require it. What is a mucus fistula? A mucus fistula is a small opening that connects the remaining part of your colon to the outside world. It allows your body to get rid of any waste and helps to keep the remaining […] - [A new diagnosis - inflammatory enteropathic arthritis](https://maliandme.co.uk/inflammatory-enteropathic-arthritis/): Just as I had hoped things were going to settle down a little with my health after the turbulent year that has been 2024, I have picked up another unexpected diagnosis of inflammatory enteropathic arthritis —one that ties closely into my IBD. I have officially been diagnosed with arthritis—something I suspect I’ve had for many years, but countless doctors had trouble identifying which type it was. Traditionally, it’s considered unusual to have arthritis until you’re 40 years of age or above, and because of this, there is a lot of gaslighting in the medical community surrounding it. “You’re too young to […] - [What should I expect when coming around from Stoma Surgery?](https://maliandme.co.uk/coming-around-from-stoma-surgery/): Whether your surgery is planned, or taking place as an emergency, there’s a million questions churning around in your mind about what to expect. Each person’s experience will be different, however, these are some of the things that I wish I’d known before my colectomy surgery. Disclaimer: I am not a medical professional, all views expressed are my own from my own experiences and cannot be taken as medical advice. If you’re concerned, please speak to your own medical care team. A forenote to the reader: This is a very scary time for you, and I want to reassure you that […] - [Diet and food after stoma surgery](https://maliandme.co.uk/food-after-stoma-surgery/): Something I get asked about a lot by others is how I have found food after stoma surgery. Everyones experience with diet and eating is different after such a major surgery, but this post rounds up what I’ve found and things I wish I’d known going into life with a bag! Trigger warning – talk of weight and eating. Disclaimer: I am not a medical professional, all views expressed are my own from my own experiences and cannot be taken as medical advice. If you’re concerned, please speak to your own medical care team. Immediately after surgery When you first come […] - [Cooking with a Chronic Illness](https://maliandme.co.uk/cooking-with-a-chronic-illness/): I have to be honest, I find putting together and cooking food to be one of my biggest day-to-day challenges when it comes to having a concoction of Chronic Illnesses. Not only am I contending with food allergies and a diet that is slightly altered due to my stoma, but I also find that my hunger levels are variable. This makes it difficult to prepare food as I don’t want it to be wasted, but equally I need to have something nutritional and fulfilling to hand as and when I need it. I am very blessed to have my Husband/Carer who’s […] - [#GUTSelfie Day 2024 with Guts UK](https://maliandme.co.uk/gutselfie-day-2024/): The 30th June each year marks #GUTSelfie Day with Gut’s UK. This brilliant initiative brings much-needed awareness to gut diseases of all types – while being great fun and helping you to meet more people in the community! This was my first year taking part, but I’ve been looking forward to it on the build up! All I had to do to get involved was register my interest on the Gut’s UK website and then at the beginning of June, I got my pack in the post. What’s the campaign about? Each year, Gut’s UK picks a different top-secret theme to promote […] - [13 Things You Might Be Able To Claim For As A Disabled Person In The UK](https://maliandme.co.uk/what-you-can-claim-for-as-a-disabled-person/): I know how exhausting it can be to know where to start when working out what you can claim for as a disabled person. I’ve created my own handy guide of things I’ve learnt, from someone who’s had chronic illness for over 22 years.  Each of these entitlements are ever changing, so please verify your eligibility based on your situation with the powers that be. If you find any extra help that’s not listed, please do share in the comments! This post is accurate as of September 2024.  Personal Independence Payment – Living benefits you can claim for How to claim? Call […] - [Wheelchair Accessible Concert Review: Newton Faulkner at The 1865, Southampton](https://maliandme.co.uk/accessible-concert-the-1865/): A few weeks back, I had the pleasure of going to one of Newton Faulkner’s concerts, as part of the ‘feels like home’ tour at The 1865, Southampton. This was my third time seeing him in concert and as always got very excited as the date drew nearer. A treat for my Hubby, this was a belated anniversary gift that we booked way back in December, so we were so thrilled when the day finally came to go! The Concert Experience The show itself was phenomenal as always, Newton can’t help but get the crowd energised from the very first song. […] - [Navigating a PIP claim: Should you apply? My tips and experience as someone with chronic illness](https://maliandme.co.uk/navigating-a-pip-claim/): A question I get asked all the time as someone with chronic health issues is ‘is it worth making a claim for PIP?’.  Let me flip that question around – do YOU have a disability that impacts your daily life? If you nodded, then my answer is a resounding “YES”. Let’s start by making something clear, PIP isn’t based on what conditions you have. It’s all about how much your disability impacts your day-to-day and how often it makes you have to do things differently to everyone else. With that in mind, I do have some tips for making the claims […] - [2021-2023](https://maliandme.co.uk/2021-2023/): For around another year or so, I put up with my digestive symptoms. I tried to discuss them with my GP on a few occasions, but nobody would listen and so I just stayed quiet.  In spring 2023, my symptoms worsened again, with me now experiencing incontinence, along with cramping, bleeding and sickness. On top of this, I suddenly developed what I was told was a broken rib – I have a theory that my colon was swollen and causing pain. Enough was enough, I had just moved house, so I went and saw my new GP.  I explained my history […] - [Being 24](https://maliandme.co.uk/being-24/): I have at this point been on steroids for about 1.5 years in total, resulting in my developing steroid-induced Cushings syndrome which has meant that I’ve suddenly put a lot of weight on.  Over the last year, my body has been through so much and it’s struggling to keep up with itself.  I continue to be tried on various biologics, including infliximab, which I sadly became allergic to. My allergies have definitely worsened, and I now carry an epi-pen because we just never know what’s going to set them off. I am awaiting follow-up with the allergy clinic about urticaria, but […] - [After the surgery](https://maliandme.co.uk/after-the-surgery/): Oh, how I wish I could say that the surgery was the end of it, and I’ve been a picture of health since – but sadly not!  I had a few ‘quiet’ weeks of recovery, before starting to notice a massive increase in my joint pain. This was compounded by a fall I had at my old house which was very inaccessible, leading to several trips to urgent care. Despite scans, an MRI and many painful examinations, the urgent care team diagnosed me as having a menescus tear and a fractured elbow. This was blamed on my use of steroids during […] - [Subtotal-Colectomy Surgery](https://maliandme.co.uk/subtotal-colectomy-surgery/): On the 13th of March, I started to develop an intermittent fever with shivering, which was treated with antibiotics. By the 15th March 2024, I had sepsis and my bowel perforated, resulting in excruciating pain. I was rushed into emergency surgery on this day in the evening, coming around to having had my colon removed and a stoma.  Here is where ‘Merlin’ the stoma enters the story, along with ‘Bruno’ my mucus fistula.  My colon was so damaged when the surgeon got to it, it had very little blood flow and was ulcerated throughout.  As a result, it couldn’t be entirely […] - [2024](https://maliandme.co.uk/2024-2/): I was desperate for relief, consulting a private Doctor in London who confirmed that I was receiving the right care via the NHS, they just didn’t often see cases as ‘bad as mine’. Due to the issues I had with skin tearing, I was paranoid about having a colonoscopy and wouldn’t let them do one, as nobody seemed to have a clue about hEDS. When I mentioned it, I was told ‘we only treat digestive issues’ which didn’t inspire confidence.  Soon after this, I moved to Southampton General Hospital for all my care – I have to say it was the […] - [Getting married](https://maliandme.co.uk/getting-married/): In December of 2020, I got married to my absolutely amazing Husband, right bank smack in the middle of all the Covid lockdowns. It’s without a doubt, the best decision I’ve ever made. At this point, I was still trying to pretend that my health wasn’t that bad. I think I had become so disillusioned with the fact that everything I seemed to suffer with had ‘no cure, or anything we can do’ that I just thought I had to put up with what I had.  In 2021, out of the blue, the amount of UTI’s I suffered with became crazy […] - [College and the pandemic](https://maliandme.co.uk/college-and-the-pandemic/): I was feeling quite rebellious by the time I was at college, sick of being the ‘sick girl’ and so I did my best to completely ignore my symptoms. Of course, that didn’t really work. Hand-writing my assignments caused crippling pain and my fatigue made it difficult to follow a lesson. However, my college were supportive and somehow I got through.  My tutor also recognised that I had severe processing issues when it came to numbers and maths and I was diagnosed as dyscalculic. During my last year of college I started doing occasional work on the side during holidays for […] - [Teenage years](https://maliandme.co.uk/teenage-years/): 10 came, 11, 12, 13 – my symptoms weren’t going anywhere. If anything, they got worse as I hit puberty and now I had the joy of also contending with my period.  The hormonal changes at this age seemed to worsen my joint issues, with my pain than ever and my immune system was in an absolute state, with me catching a virus at least twice a month. I barely had time to recover from one thing before I started the next.  Teenage Years At fourteen, I was referred to rheumatology by my childhood consultant and I had the first appointment […] - [9-10 years](https://maliandme.co.uk/nine-to-ten-years/): My joint pains, and coordination issues continued, severely enough that once I outgrew my pushchair, the hospital decided that I needed a wheelchair. Safe to say, it was bubblegum pink – in true ‘Mali’ style.  Around the age of eight I was provided with a variety of support splints to wear and orthotics. The doctors decided I had juvenile arthritis and that, of course, they couldn’t do anything for this. It felt like we weren’t really getting anywhere, even as a child.  All the way along, my consultants at the hospital would tell me ‘you’re going to outgrow these issues’, ‘Just […] - [6-8 years](https://maliandme.co.uk/six-to-eight-years/): Because of my terrible immune system, permanent fatigue, stomach issues which were leaving me glued to the bathroom for fear of accidents and ongoing issues with unsteadiness, I ended up not being able to attend school.  My family tried to get me a school placement multiple times, but in the year 2006, schools were not inclusive and the idea of ‘reasonable adjustments’ was quite mind-blowing. Hence, I was homeschooled.  Around this time, I developed a lot of anxiety and my family noticed I would struggle to keep eye contact and stim. I was academically ahead of my years, with a multitude […] - [0-5 years old](https://maliandme.co.uk/zero-to-five/): I was a very healthy baby, but by the time I reached two years old and had my baby vaccinations, something changed. There’s a lot of speculation over what cause this changed, especially since the internet didn’t much exist at the time, but safe to say I wasn’t well from this point. In hours and days after my vaccinations I became distressed, ran a fever, exhibited flu-like symptoms and was noticeably more fatigued. These symptoms never fully went away, with me seeming to have a much weaker immune system after this point and constantly suffering with chest and urinary tract infections. […] - [Getting Diagnosed With Pancolitis In The UK - My Experience With Ulcerative Colitis](https://maliandme.co.uk/getting-diagnosed-with-pancolitis-in-the-uk-my-experience-with-ulcerative-colitis/): The story of my Pancolitis diagnosis via the NHS as a 22-year old who has had ongoing stomach issues for years... ## Pages - [Q50 Wheelchair Safety Experiences](https://maliandme.co.uk/q50-wheelchair-safety-experiences/) - [Recomendations](https://maliandme.co.uk/recomendations/) - [The Motability Scheme](https://maliandme.co.uk/the-motability-scheme/): Explore Motability Scheme Live​ Birmingham with me AD: Some Paid Partnership Pieces (Clearly labelled) I had a great time exploring the event, visiting some of the great brands that are a part of the scheme. From reconnecting with brands I already know and love to discovering some completely new ones, this event really opened my eyes to just how many options are out there. I had the chance to try out a range of wheelchair accessible vehicles (WAVs), meet the brilliant teams behind various vehicle adaptations – and even spend some time with Team BRIT! Explore Motability Scheme Live​ Birmingham with […] - [Link in bio](https://maliandme.co.uk/link-in-bio/): See my feature in Metro – Pumpkin Spice Lattes turn 20! Browse the blog Meet my new wheelchair! Read the post – My Mucus Fistula Journey: day-to-day life Instagram Threads Youtube Tiktok X-twitter Facebook-f Linkedin - [The Legal Stuff](https://maliandme.co.uk/the-legal-stuff/): Disclaimer, Terms & Conditions, Affiliate Links, and Accessibility Statement 1. Disclaimer Informational Content OnlyAll information provided on Mali and Me is for informational and entertainment purposes only. The content represents personal experiences, opinions, and ideas, and should not be taken as professional advice. Always consult with a qualified professional regarding any medical, legal, or financial decisions based on the information found here. No Guarantees on AccuracyI strive to keep all content up-to-date and accurate, but I make no guarantees about the completeness, accuracy, or reliability of the information on this blog. Your use of any content on Mali and Me is […] - [Press](https://maliandme.co.uk/press/): Can’t believe I can say this… It was a total dream come true when Radio 1’s Newsbeat reached our in January to ask me to take part in a segment on accessible housing. Listen for yourself here… I’ve been on BBC Radio 1… Find me on Instagram @mali.and.m.e Read My story Other Recent Features: https://www.youtube.com/watch?v=xApg5kJhdB8 Date published: 11th June 2025 Featured in The Pituitary Foundations Latest Magazine: My name is Imali, I’m 24, a business owner/blogger and I live with a host of complex chronic health conditions — including ulcerative colitis, enteropathic arthritis, hypermobile Ehlers-Danlos Syndrome, and currently, steroid-induced Cushing’s Syndrome. […] - [Cookie Policy (UK)](https://maliandme.co.uk/cookie-policy-uk/) - [My Story](https://maliandme.co.uk/my-story/): My experience with health has been anything but linear Here I share the full story… This is the long winded, uncapped version of events. If you’d rather read the summary (which I wouldn’t blame you for at al!) then please visit my ‘About’ section. I operate on the policy of being an ‘open book’, so if you have questions, I am very happy for you to ask them either via the website or socials. Stay in touch on my socials Facebook-f Instagram Youtube Linkedin Then & Now Through the years Search Search - [Privacy Policy](https://maliandme.co.uk/privacy-policy/): Privacy Policy for Mali and Me Last Updated: 29/09/2024 1. Introduction Thank you for visiting Mali and Me. We respect your privacy and are committed to protecting your personal data. This privacy policy will inform you about how we handle and protect your personal data when you visit our website. 2. Information We Collect a. Personal Data: This refers to any information about an individual from which that person can be identified. We may collect, use, store different kinds of personal data about you which we have grouped together as follows: Identity Data: This includes data like your name and username. […] - [Contact](https://maliandme.co.uk/contact/): Contact Me Whether you have a question or a collaboration opportunity I’d love to hear from you. Contact me using the form below and I’ll aim to get back to you within 24 hours.  Ask me Anything Commonly Asked Questions I’m an open book. If your question isn’t answered, use the form above to get in touch! Whereabouts are you based? Thanks to my job over at Inkfire, I get to travel quite often but I am Southern-based most of the time. Thanks to my job over at Inkfire, I get to travel quite often but I am Southern-based most of […] - [Blog](https://maliandme.co.uk/blog/): CATEGORIES - [About](https://maliandme.co.uk/about/): I’m so pleased you’re here… I’m often referred to as the ‘pinkest’ person you’ll ever meet. Having been blogging on and off since the ol’ days of WordPress sites back in 2014, I’ve always enjoyed writing and sharing my thoughts. For those of you who remember (my OG followers!), I started out as ‘Pumpkins and Planners’, eventually morphing into ‘Mali & ME’ – Myalgic Encephalomyelitis being the first condition I was ever diagnosed with (but plenty more having come along the way since). I enjoy expressing myself through creativity, and can always you will always find glitter where I am! For […] - [Homepage](https://maliandme.co.uk/): Living life boldly: the realities of chronic illness, business, and beyond. An award-winning entrepreneur, disability advocate, & proud wife based in Dorset I’ve been chronically ill since I was two, and over the years, I’ve found my passion in disability awareness. I love opening up the narrative around chronic illness and consider myself an ‘open book’. Creativity is my happy place, so I’m usually knee-deep in some kind of project. When I’m not working on something, you’ll probably find me with a cup of tea in hand, surrounded by my enormous Barbie collection. About Me Recently on Instagram​ One year of […] ## Optional - [Agent (MCP protocol)](websites-agents.hostinger.com/maliandme.co.uk/mcp) [comment]: # (Generated by Hostinger Tools Plugin)