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Chronic Illness Life Changes: ‘Little Things' No Longer Exist

Updated: Oct 12, 2022

As it has been a long time since my last blog post, I will re-introduce myself …

I’m Ali, I’m 25, I grew up and still live on a working farm in the beautiful Yorkshire Dales with my amazing family and friends. I’m a physiotherapist, currently working on the orthopaedic wards at Harrogate Hospital. I am also a Physio at Harrogate Rugby Club and I run my own business, ‘Fewston Physio’.

I started my blog, ‘Under Young Skin’, in March 2020 and created ‘Chronically Connected’ in 2021. My blog has connected me to many people in similar situations and helped me along my journey with chronic illness. I created Chronically Connected to bring those with chronic illnesses together and to give everyone a space to share their stories, and promote their blog pages and businesses. I have received so many great comments on creating this, and I strive to make it bigger and better to help as many people as I can.

So, going back … I was never a particularly sick child. It all began 11 years ago. I got glandular fever and was off school for about a month. On 14th Feb 2011, the Doctor initially thought it was just an ulcer and then they thought it was tonsillitis. They gave me amoxicillin which made my whole body come up in a rash and swollen. They then decided to test me for glandular fever and when it came back positive, they switched my medication on the 23rd of Feb. For over a week, I could barely move; I couldn’t get dressed by myself or cut my food up because my hands were so swollen and painful with the rash. I ended up able only to drink fluids as my lips swelled up and my throat was so sore. I lost 10lb in a fortnight (weight that I didn’t need to lose). They gave me Ensure drinks to gain the weight back, but I was still so fragile when I went back to school. The Doctors told me I was at high risk of rupturing my spleen, so they were concerned that I was to be going on a school skiing trip within the next month. Being so knocked back and feeling so frail, as much as I wanted to go skiing, the thought of a school trip was horrifying. Off I went and on the 2nd of a 5-day skiing trip I was coming down one of the hills, very slowly as I was still very much a novice. I came to a big pile of snow and couldn’t turn, and it was pretty much a standstill fall and my boots didn’t unclick. The pain that I felt in my knee was nothing that I’d felt before. [As a child, I had never broken a bone before, I think the most painful thing I’d done before this, was dropped a whiteboard on my toe – we went to A&E, but nothing was broken! And a sprained foot after a (bad) handstand in 2007!] The teacher that was skiing with me came running back up the hill to get me out of my boots. My memory fails me from that point to then being in the ski resort medical centre and having an x-ray. They said it was a medial collateral ligament (MCL) tear, I had no idea what she was talking about at that point. It got very swollen, they put me in a brace, gave me some drugs and told me to ice it. So, I watched everyone go off and ski for the next 3 days whilst I was couped up. My parents came to pick me up from the airport, and we then went straight to Airedale A&E. They put me in a cast for 6 weeks. My parents and I put our trust in the healthcare professionals, we thought that because they had decided this, that it must be right. It’s only been since other healthcare professionals had criticised this that we realised I shouldn’t have been in a cast for 6 weeks for my injury. When we took off the cast, unsurprisingly, my leg had just wasted away. I barely had any muscle; my knee was still painful, and I could barely move it. I had physio at various places, being a kid, I didn’t do my exercises religiously which didn’t help. The swelling went after a month or so and the pain reduced but was still always there. April 2012, I got a second round of Chicken Pox but didn’t think anything of it. I felt fine with it, just very embarrassed at school!! That June, we finally went back to the Dr because I was struggling with knee pain and swelling again – they said then that I had cartilage damage and just referred me to physio again. I remember going to one physio and he said I had lax ligaments and slight hypermobility which probably wasn’t helping in the combination of things either. Back to the GP in October, knee pain and swelling again, but nothing was done. Again, in April 2013, the same thing, nothing was done. Then in August, I went to A&E with it as the swelling got really bad, this is when we moved to Harrogate Hospital. I was sent home with a brace and crutches, just in time to start Sixth Form at a new school. Turned out well as the people that helped me through doors and helped me with my crutches when I started have been my best friends ever since! In October 2013, I had an arthroscopic washout and synovial biopsy. This is when they told me it was Juvenile Idiopathic Arthritis, but it says on all the files Monoarthritis... so, who knows! In November, it all came back, and January 2014 was the start of aspirations and steroid injections – 3 in the year, all helped at the time but clearly didn’t last long! For the next 3 years, I never went back to the GP about my knee, I was having private physio. My knee didn’t swell up properly but had never gone down to normal size. I always had pain and struggled whilst in the gym and doing sports whilst at Uni but never thought it was too bad to go to the GP. That and the fact I think I had lost trust and felt like nothing helped and didn’t want to go waste my time or their time!

So, this part of the story, I have told before but will briefly spell out. In October/November 2017, after a night out at Uni, I tripped on a curb (running to the burger van) and rolled my ankle. No surprise, it swelled up, but it did take longer than expected to go down. Then my other ankle started to swell, no injury, no reason. They half went down and then my right knee swelled up. If this was to be my left, I wouldn’t have thought anything about it, but I had never swollen in my right knee before. I had spent the last 7 years limping, protecting my left leg, I could not figure out how to use my left leg to now protect my right leg. I went to the GP on 20th Nov, they first said about my right knee ‘suspect osteochondritis and patellar tracking issues’. It got worse; I went back on the 27th. My wrists had swollen, my ankles came back up, and both knees were swollen. I could barely move. They weren’t sure so sent me home with naproxen and co-codamol and did a Rheumatology referral. On 8th December 2017, I got the diagnosis from my Rheumatologist – inflammatory arthritis. I had no idea what this was. I didn’t understand that it was going to affect me for the rest of my life. I was told so many times when I was first diagnosed, mainly by my rheumatologist, that once you’re on meds you’ll be fine and so many people go into remission. He painted a pretty good picture. I was still at Uni; all I was bothered about was if I was going to be able to continue living my Uni life. They gave me a systemic steroid injection to put me on until the Sulfasalazine kicked in, and off I went. Luckily, and now I realise, I was bloody lucky... I was pretty much able to live my normal life for the next (nearly) year. I got to finish Uni going about no different than before diagnosis. I got to have my 21st and my graduation with no problems at all. I did have regular visits to my GP but not about joints. In June, I was borderline anaemic, so they put me on Iron and then in August they said I had low Hb, so they paused the Iron. I also had been for a Dermy and Gastro appointment, neither were conclusive, they just said to keep diaries! I have suffered with eczema pretty much all my life, but it was worse at Uni (alcohol maybe?)! Then, In September 2018, it got to the point where I had to call my GP about my swollen hands, it was so hard to do anything dexterous. It was around the time when I had a cold (or different colds) for about a month or two so clearly my immune system was not happy. She gave me antibiotics and oral steroids for me to take whilst on a trip to New York. I managed, I wasn’t fantastic, but I managed. In November, my knee had a big flare-up, so they increased my sulfasalazine dose. Looking back, I should’ve asked for this earlier in the year as I was just ‘managing’.

I started my Master's degree in January 2019, the stress of Uni, starting to realise what the condition I had meant for my future, losing my grandad... it all just got on top of me. I started by speaking to the mental health team at Uni and then went to my GP. I took part in NHS counselling and started on anti-depressants. The Uni was really good to me and helped me when I needed it. The course was quite hands-on, so I did struggle at times. When I started my first placement in September, my hands swelled up. They couldn’t find any damage on the scans they did. They pretty much said they weren’t that bad, so go back if they’re more swollen. In December, they diagnosed me with impetigo. That took ages to go, and I still have the scar from scratching it! Since then, I have had different episodes of bad skin and they’ve said every time differential diagnoses... so again, who knows! Leading up to and during my third placement in July 2020, my joints were really starting to bother me. After weighing up the pros and cons, I decided to try Methotrexate. I was worried sick to start Methotrexate, and then I spent the whole time on Methotrexate feeling sick. I was only on it from September 2020 to April 2021. I just felt so ill on it, I lost so much weight, the hangovers were horrible, and my flare-ups did not improve at all. I had a chat with my Rheumy nurse, and we decided to try hydroxychloroquine with the sulfasalazine. I started that in May 2021. I had no bad side effects from this at all. I kept having flare-ups and since I started work at the hospital in December 2021, I realised that I wasn’t coping at all. I was struggling for no reason. I realised I didn’t have to prove to anyone I was managing on the meds I was on. Another chat with my Rheumy nurse and she discussed it with the consultant that biological therapy would be the best option now. There was no point trying to work and struggling. There was a discussion about whether I had Rheumatoid Arthritis after all this time or if it’s Psoriatic Arthritis. I’m still not sure what they now have me down as. I stopped taking the hydroxychloroquine and sulfasalazine in May 2022, hoping to start biologics. Everything was delayed for one reason or another, so for 2 months this year, I had not been on anything. I know the drugs will still have been in my system, but really, I depended on co-codamol, etoricoxib and CBD edible and topical products from Nature's Medic (a small business in Mansfield). Obviously, there is no way of knowing, but I don’t think I would’ve coped with the pain if it wasn’t for the CBD products at this time. I finally started Amgevita (Humira) on the 19th of July 2022. These are fortnightly injections. At first, I was terrified of injecting myself but once the nurse talked me through it and my family was there with me, I felt okay about it. For the first 2 injections, the nurse was with me. The next fortnight, I was due to do it myself, but I got conjunctivitis so couldn’t because of the infection. The following week I was meant to do it they put me on antibiotics. I don’t know when this blog will come out but today is now the day that I can do my injection! I will do a video, so you can go back and look at it on my Instagram and I’ll try adding it to this post!! I was meant to do it yesterday (to keep the Tuesday train), but we were at Kilnsey Show, a local agricultural show and didn’t get back until late!

Onto the main part of my blog post after all that waffle …

I wanted to write about how chronic illness makes such a big impact on your life. Saying it like that makes it sound obvious. However, a lot of chronic illnesses are invisible or can be invisible at times. I have discussed a lot of medical changes but there’s a lot more to it than that.

That’s one of the difficult things I find about living with chronic illness. It’s so unpredictable, so variable. One day you can be stuck at home not being able to do anything and the next day you can be doing as much as possible and be (relatively) okay. Or even one minute to the next. Fatigue can come and go in waves; pain can come and go in waves. And until you experience it, it's hard to understand. For example, yesterday at Kilnsey Show, the walking got too much for me, I was at the point where I needed a stick to walk, I had to sit down, and I looked like I’d been hit by a bus. About half an hour later, I was helping with the sheep and dancing with my niece. I always have this fear of how this looks to other people. But I’d had a rest, I’d taken some more painkillers, I’d had some food and a beer. I felt like a different person. Today, I’m having a slow day because I was on my feet all day yesterday. But tomorrow I might feel great, or I might feel worse than ever going back to work. I have no idea, I worry every night about how I’m going to wake up the next morning, how much am I going to have to cope with the next day, how many painkillers am I going to have to take to get through the day. Or am I going to be lucky and get through with nothing? The variability of this never fails to amaze me and the unpredictability never fails to scare me.

I know I share a lot on social media about how we should all try to not care about what others are thinking or judging but we all know that is easier said than done. I am finding it a little easier to just get on with what I’m doing and not think about other people, but it is hard to not let it bother you at all. And that’s okay. It will come in time and experience and confidence.

Chronic illness takes away the things we used to call little things. There's no such thing as a little thing anymore:

Remembering things like painkillers on a day out, used to be a little thing, it didn’t matter. Now, it’s the difference between having to go home or staying out. Doing the washing is just a little thing you’d do at the end of your day. Now, it depends on whether you can bend down that day or not. Packing for a night away used to be just chucking some clothes and make-up in. Now, have I got all my tablets, different pairs of trainers? worrying about whether I will cope. Going somewhere in the day, used to be without a thought. Now, have I got enough energy to do this and have enough left over to do the things I need to do and go to work? Making tea, used to be no problem standing in the kitchen for however long it took. Now, if I have the energy or not, sitting down when I can, struggling to hold heavy pans.

Again, this can all be variable. I tend to write my blog posts about how I am feeling at the time and usually, this happens when I’m sitting resting so not doing so well. So, take everything with a pinch of salt… some days I will complain and moan because life feels shit, however, some days, I’m wanting to promote positivity and to live life as best you can.

My life is definitely shaped by my illness, and I couldn’t imagine it any different. I have made friends through the chronic illness online community, and I have been inspired by so many. Everything I do now, I stop first to think can I do this because of my condition? Although this is scary because I’m only 25 and I know I will spend the rest of my life thinking like this, I also know that I can do so much more, and I am so much more because of my condition. I wouldn’t be the Physio I am today if it wasn’t for it. I don’t even know if I would be a Physio. I wouldn’t have the strength and courage I have today if it wasn’t for everything I’ve been through. I wouldn’t be trying to help others with chronic illnesses today if I didn’t have a chronic illness myself.

Don’t get me wrong, there are plenty of times when I wish I didn’t have this and more than plenty of times wishing I was stronger to be able to cope, but in some funny way, I am grateful for this journey.

Recently I posted an Instagram reel on how chronic illness is a whirlwind of emotions and living with it has made me admire anyone living with chronic illness even more.

Don’t forget to subscribe to Under Young Skin and follow my Facebook page on ‘Creaky Joints Under Young Skin’ or my Instagram @alidaggett. You can also reach Chronically Connected on the website or on Instagram @chronicallyconnected21

This is my Amgevita injection video:

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