The Cripple Chronicles
A podcast about ilizarov frames, amputation and the journey to accepting and embracing disability after being involved in a near fatal car accident.
The Cripple Chronicles
3 years, one leg. how has life moved on? | cripple chronicles podcast (Ep.51)
Hi friends!
Welcome back to another episode of Cripple Chronicles!
Last episode i actually wanted to talk about the fact my 3rd ampuversary was coming up.. i planned to record this on the day of the ampuversary however disability popped up as it does at the most oppotune times and i had to rest until i was able to record - and also edit the episode to bring it all together.
While i try and bring together all of the strings about euthanasia for the video essay i am wanting to get out, the next episode will be a compliation of sorts kind of a crash course of episodes where i talk about how i ended up with one leg and trying some new editing while i do that. so if you would like to see that please subscribe and hit that bell because i try to upload every two weeks but sometimes not on the same day because disabled, sigh.
What are some anniversaries you like to reflect on? id love to know in the comments or alternatively -
📩 Email: cripplechroniclespod@gmail.com
📱 Follow me: @cripplechroniclespod on Instagram + TikTok
📕 Chapters:
00:00 – 01:05 Introduction
01:05 - 09:26 What i remember most from amputation day
09:26 - 11:46 What were the hard things post amputation
11:46 - 15:34 First year milestones and when things began to shift
15:34 - 21:19 second year progress (aug 23-24)
21:19 - 35:14 What have i learned in year 3
35:14 - 39:53 Body image post amputation and what comfort means now
39:53 - 42:07 what have i learned about resilience and adaptation
42:07 - 46:25 what feelings have came up overall about amputation
46:25 - 59:14 Outro
🎶 Music Credits:
Intro: Reflection by Filo Starquez
Outro: Angelz by ZiMPL
Background: Limousines - TrackTribe
Today's episode is one for reflection, the good, the bad, because it is about my third ampuversary. Some dates hit differently but for me I am terrible at remembering birthdays but certain anniversaries kind of stick in my mind, stick in my body, you know that kind of way where you can feel the tension and the jittery mental space and the heaviness that sneaks in and sometimes I don't even kind of click on the anniversary or whatever it is until it's later that day and I've already kind of been through the emotions. Today is kind of one of those days for me, this week I had my third ampuversary. Some quick context for anyone who is new here, six years ago I was in a car accident due to black ice, that is an anniversary I make an attempt to mark too but it falls on Simba's birthday which I always end up feeling like an awful cat mom for, fast forward months in a lazaroff frame, the first one I had for seven months this was then removed, I got a serious bone infection and there was the looming idea of amputation however at that moment for me amputation felt like giving up, like looking back the pressure wasn't just from me it was people around me that were suggesting it and I opted with my surgeon and said okay we'll try the frame again I don't know how I'm going to get through it because my mental health already felt like it was going to be destroyed. It got to the start of the second year where I basically said look I was already struggling and you keep telling me three months and it has really just eaten away at me so when do I know what's going to happen, when do we say this hasn't worked and he told me that was always down to me so I started to do the research, I started to reach out to limb services ask what amputation could look like and I went through this process for probably about eight months so I went to the pre-amputation appointment, there's an episode on that if you want to ask if you want to hear the kind of things I was asked and the information that I was given but I went to this appointment a few weeks later, I had a clinic appointment and my surgeon said to me it's been two years either we try it and it's worked or we try it and it hasn't and unfortunately in the process of removing my frame my leg snapped in front of me and I was just in so much shock and I just said I'm done if it's broken amputate it and I was at that moment done like living with the frame on was miserable, I voiced how much I was struggling constantly and the toll that it had on me was unimaginable like I didn't know that pain, heartache, grief, all of the things that I went through with the frame I didn't imagine that that was ever possible and amputation was terrifying like it was but ultimately it ended up giving me my life back. Hi friends, welcome back to another episode of the podcast, everyone experiences anniversaries differently and I have had a lot of time to process mine when I was in the hospital coming up to amputation, staff had once said to me or called me the poster child for dealing with amputation and as much as that was flattering I still had my own battles and I guess this is about having the room for the lows and the highs that come throughout this journey. If you have been through recovery due to an accident, became disabled or an amputee I would love to hear what kind of anniversaries are important to you on your journey and you can let me down below, you can let me know down below in the comments or if alternatively you don't want to do that you can send me an email to cripplechroniclespod at gmail.com. I'm going to kind of get into the sections of this episode if you wouldn't like, if you would like to not miss another upload from me you can subscribe and click that notification bell. Currently I am on a two-weekly upload schedule, I have an episode coming out about the ethics of euthanasia, I'm still to record, I'm still to finish even fucking bringing it all together. If you want to see more of me hit subscribe, turn that notification bell on, you can also find me on socials at cripplechroniclespod if you want to see what I am up to outside of the podcast but yeah grab some snacks and let's get into today's episode. Sometimes when planning episodes I will go through and write down questions to myself and then the answers to the questions I'll kind of build off of that for an episode and that's what we've got today. Well those of my eyes open there were crazy, but yeah that's what I've done today so all the chapters are going to be down below you can skip about if you want to or stay for all the yapping but I'm going to get into first what I kind of remember most from my amputation day which was the 28th of August 2022. The days leading up to surgery were an emotional roller coaster like my legs snapped, they told me I needed a CT scan. I sat in that room for five days waiting for that CT scan asking every single day getting upset every time they delayed it or made excuses getting taken down for an x-ray to then be told that we're not going to expose you to radiation when it's not necessary so sent back upstairs and then I think after that one of the nursing assistants had came in and asked me if I wanted to go home because I was this was a Saturday and I wasn't going to get the scan until the Monday. At this point I didn't know if my leg was broken. I had been admitted to hospital what three or four days prior. I had like stopped my carers coming in and this was like maybe five six o'clock on a Saturday evening so you're expecting to discharge me home to get my carers to come back in for the evening I get home and for the next day not knowing how much weight I can even put through my leg because we don't know if it's broken and this was so wild to me. I ended up finding out it was actually one of like the surgeons that worked under my surgeon that recommended this and he was like well I didn't know if you thought it would be more comfortable like nothing would have been more comfortable than having a scan and actually knowing if my leg was broken because that was part of the emotional roller coaster not understanding if it was broken if it wasn't still having this frame am I going to need to get my leg amputated and then my surgeon had to be upfront because with the second frame I grew three new pieces of bone. I had a bone graft put in at my knee where my leg had broken so realistically that should have been the stronger part of my leg in my mind because that is the part that had the bone graft and I had grown bone up the top of my that is why I was told by my surgeon that they didn't know how much of my leg they were going to have to amputate if I would be eligible to be able to wear a prosthetic. I could have been potentially a full-time wheelchair user pre-op. I knew from my pre-amputation appointment that the odds of me walking again as above knee amputee was a one in four chance however all of the things that had led up to this point it was a miracle that I was still going so I felt like yeah why can't I have that 25% chance for me to be able to make this work however even with that mindset it was still fucking terrifying. The night before I found myself reciting serenity prayer over and over and over again at least five times probably more trying to mentally prepare myself for the unknown and unloading all of this weight that I had been carrying for the first two and a half years of a very intense journey to try and save my leg and when it came to the morning of the surgery it was very early I'm pretty sure I was woken up about 5am night shift usually does surgery prep getting you washed clean all of that stuff and I was absolutely shitting myself and I just had this looming feeling of dread. I kept telling myself repeating to myself that I was going for a long sleep and I would wake up and hopefully things would be better because this was surgery number 10 for me at this point in a short space of time so I had almost found a way to cope with all of the emotions that come up going for surgery like there was a few times sitting in like post-op like you sit post-op before you go in so I was sitting and they were doing all the paperwork and there was multiple times where I was crying or feeling sick I never actually was sick but it's so daunting to know that you're basically putting your life into the hands of medical professionals and you just need to hope that it works out and that is terrifying any surgery you're going for whether it's fixing a bone or amputating one I had hope it was in there it always has been in there but even with this it gave that idea of I'm gonna go to sleep and I'll wake up and it'll be better it did help to give me just a small sense of grounding what about early recovery what were the hardest bits and what were the surprises another burp I think getting home from the hospital turned out to be more complicated than I expected I asked somebody from my support network to pick me up and they basically made excuses to delay leaving me feeling really frustrated and quite vulnerable I hated being in hospital it really fucked with my mental health I wanted to be back at home with Simba so thankfully one of my close friends stepped in and when I was in the car they had mentioned to me how much of a relief it was just to not see me in constant pain anymore and it hit me that I hadn't been hiding my struggle as well as I thought that I had recovery after getting my my leg amputated really kind of felt like a work like it felt like I was on two times speed considering what life was like with the frame suddenly I was got my prosthetic at physio moving quickly from two crutches to walking sticks to one walking stick to finally being able to take unassisted bars unassisted bars like I'm a rapper or something unassisted steps in the parallel bars which was and is still huge for me because even at this point I don't know if I'll be able to walk unaided but being able to do that within the parallel bars and not really holding on again it gives me hope there that that's possible and although the pain started to kind of build up and I started to face the socket challenges the pace that I was moving at in the beginning was really surreal after the really slow monotonous grinding years with having the frame on every tiny movement and milestone just felt like it was such a bigger achievement to me every single step felt like a victory that I hadn't fully anticipated that it would be possible and even now the more distance that I walk the things that I'm able to do I feel those wins so strongly because of everything that I experienced with the frame what were the first year milestones and when did things kind of start to shift getting back in a car and driving for me was absolutely massive going to the assessment centre and seeing what kind of options are where for adapted cars actually getting in a car and realising that when I sat in that driver's seat I was not overrun with triggers flashbacks traumatic memories because that was one of my biggest fears being a passenger I'd felt quite sick and overwhelmed and triggered with the PTSD of my accident that getting back in that driver's seat I was really really worried that something might come up and even when it got to booking lessons and the driving instructor first coming out to my house I didn't know how much information he had so he kind of asked me to get in the driver's seat and me being me straight off I went well I really hope you're not wanting me to go down and drive there on that dual carriageway because the last time I was in a car I totalled it and he was like okay let's just sit down and have a chat like we're just gonna go around the neighbourhood like do some basic things and the more that I did that the more that I was building back my confidence and I managed to get my card just after the first ampuversary prosthetic wise prosthetic wise I got assessed and was qualified for a free moving knee which felt like a really kind of tangible win which really kind of fell flat after my fit and issues like I'm still at a point where I'm working on that however it was something that was built up to be like a really big goal and then realising like I just need to work with the prosthetic that I've got to be able to do things where like a free moving knee would make it easier but it doesn't necessarily mean that I wouldn't be able to do it with a straight moving knee but I also started kind of exploring my mobility at home and outdoors kind of getting reacquainted with what it felt like to be independent in small ways going to the beach going to the park going out for a walk going to the shops like every small task felt like reclaiming my life a bit that had been paused for so long kind of getting onto the bus for the first time with somebody with me being an amputee amazing getting on that bus again myself as an amputee for the first time felt like I was riding the bus for the first time in my fucking life like that's what I mean when I say these wins felt so amplified and they still do because it's a new way experiencing things and my life was on pause for such a period of time that when I'm able to actually do things I feel like I have much more of an appreciation for it than maybe I would have had if I didn't have that time of the frame on so in the first year I really started I need to take a drink my voice is so in that first year I really started getting out in my wheelchair going on public transport hitting the gym being at physio reducing carer visits that independence really mattered to me I was trying to learn how to manage my pain pace myself noticing the tiny improvements that all added up month by month and reflecting and seeing how much of the groundwork that I'd laid for myself weight bearing with the frame the going to physio pushing myself even when it felt like I was being set back it built a really strong base for my recovery and looking back the first year does really feel like to me that it was filled with a lot of small victories that really added up to give me the confidence to know that I could move forward even on the days that feel really fucking difficult second year patterns how was a feeling kind of from august 23 to august 24 year two was a bit of a mix like I'd said kind of roundabout that time the fit in issues were persistent and it kind of felt like my progress came in chunks so the things I've written down kind of highlights are rediscovering joy and driving and the confidence building with that like me being able to get in the car and drive down to Leeds that is something that is so massive to me and there are a lot of people out there that haven't been in car accidents that don't really like to drive that amount just because you don't really enjoy it as much whereas I do so that's something that was massive to me starting therapy and kind of tackling my childhood trauma shame and very um shame fuelled internal dialogue that was filled with very negative self-beliefs and this was a intense process but one that was really really necessary for me and starting being a mentor expanding advocating for myself but also other people and also kind of working on my communication skills in a different area there were things that came into play in year two that were pretty complicated and often very painful my support network at the time was pretty inconsistent and reaching out for ended up bringing more stress than relief there was a lot of times where I tried to communicate and it went unanswered or there was arguments flaring up over misunderstandings and major occasions became painful reminders of the amount of emotional distance and strain that was there because of very fractured relationship it revealed a lot of cracks and tension and it highlighted the limits of support and the emotional cost of seeking connection from people who weren't able to really meet me where I was at this combined with a heavy reliance on my wheelchair and kind of shrinking of my support circle which made it stronger but was difficult at the time made the kind of next months after that kind of really challenging I requested my energy efficient wheelchair I experimented with medical cannabis for relief and it was really helpful however financially I just could not afford to do that on a month-to-month basis at the time pardon me and I also went through supporting one of my closest friends with a pretty terrifying NHS experience where we weren't sure what was going to happen and it kind of felt like they didn't give a fuck if she lived or died and that was heartbreaking to kind of see that happening and also feel pretty powerless over just being there and showing up which the way I've said that it kind of sounds small I know that's not a small thing for me to show up and be there and offer support but it was a situation where I wanted to be able to do more and I couldn't so with all of these things kind of together that really was a test of endurance for me over the second year I feel like emotionally physically mentally navigating all of these difficult things that were kind of co-existing at the same time gradually kind of strengthened my resilience and coping strategies the ability to kind of trust my own judgement even if there was people around me that weren't able to provide consistent support that is something that I think I kind of struggled with because of those things going on I was almost feeling like when I was reaching out and asking for support I was being told that my needs were too much and going through therapy that was something that I was actively working on that one of my limit and negative self-beliefs was that I am too much for people and my needs and relationships don't matter because I was just a massive people pleaser as long as other people were happy in turn I was happy but I wasn't I was fucking miserable so realising that there was relationships that preferred that version of me made me kind of realise that maybe it just wasn't meant to work out and that's not something easy to say that's something that over the past kind of year and a half I have had to put a lot of kind of thought and process and energy into because it's hard like I want support I want people around me I want to have like healthy nourishing relationships but unfortunately if the other person doesn't want that it's not really possible I hope I'm not just kind of like talking in code I felt like the way that I worded that was a bit vague but at the same time it is something that requires a whole episode on that one thing probably and I guess there is a bit more context with where I am now kind of in year three perspective this year what milestones were included was being able to walk a kilometre which was the longest distance since the accident and also managing to roll six and a half kilometres in my wheelchair which figuratively and literally is like pushing myself further than I kind of thought possible I really opened my eyes with finances stopped burying my head in the sand and started tackling debts because this was something that was a major source of anxiety for me I was sorting out my bills focussing more deeply on my mobility and the accessibility of my home especially from 2024 being a full-time wheelchair user I was starting to realise that maybe things could be set up better in my house to help me to navigate around the house better basically and I think I kind of learned from year two and year three combined that asking questions is always better than overthinking something and that has felt like it's been really liberating and also able to look at things and give myself credit and I kind of pat on the back for all of the small steps that I make along the way to creating like a really beautiful life for myself following on from year two and what I kind of mentioned about my support circle relationships kind of shifted in both subtle and significant ways I felt a lot less guilt when setting boundaries being more confident and comfortable and being authentic and not people-pleasing because masking is absolutely exhausting and I would rather that the people that want to be in my life respect me for a real version of me rather than a curated version to please them because that doesn't make me happy at the end of it I had hoped to kind of repair some relationships in my family however that remained very complicated and nuanced and there was a lot of moments filled with frustration and disappointment because I had to kind of accept the reality that there was moments of frustration and disappointment but there was also a weight that was lifted that I didn't even really fully realise I was carrying my mindset has really evolved from being fuelled by self-hate and shame to one grounded in compassion and empathy that I extend to others because I deserve that for myself too at 27 I'm finally feel like I'm laying down a solid foundation for my life and it's one that I fully own embracing the freedom that comes from knowing what my limits and my capabilities are being able to have recognition from my family would be nice but I am really content and proud of the things that I've managed to do by myself I really like being able to celebrate both the achievement and effort because understanding that effort is meaningful I'm okay as being seen as the villain in other people's story because I hold absolutely zero guilt or remorse because I've acted for myself in a way with integrity damn I really wrote a lot of notes for this episode so I'm already half an hour and I'm only at section two let's see how long this episode is gonna be. Amputation, I had just recently moved. I had had OTs from the council in and helping kind of set up the house for me to be able to exist with the frame on and although I didn't know what to expect from amputation, I did feel lighter almost immediately, like the frame had not only been so heavy emotionally but heavy physically. I really did have a sense of relief when I woke up and felt that lightness, really not having to kind of lug around this way and the friend that picked me up kind of saying not seeing me in pain like with that frame on. Every movement that I did caused me pain and coming home, adjusting to life without the bulk of that, it was still hard but it felt like caring for myself became easier in smaller ways. I had a friend stay with me for a few days when I got home which was really nice of not just having that feeling that I'm alone and have to adapt alone but even with that I slowly started to reclaiming that bit of independence. I really threw myself into using my prosthetic and I've always been very clear on my wheelchairs for when I'm at home so that I'm able to then do more outside with my prosthetic. I'm somebody that likes to go out, I like to be in nature, I like to set myself little tasks because putting my leg on to walk about the flat just does not stimulate me in a way to want to put it on. But I think it's kind of highlighted something for me that I wish people maybe understood more. Disability isn't just about mobility, it is about the constant effort of managing appointments, self-care, advocacy, the NHS weight game, it's figuring out where I fit in the world as an amputee whilst resisting the assumption that because I'm resourceful and I will find a way to cope that I can just be left to it because that mindset burns me out and it does actually put my health at risk. By year three, my routines have become a lot more deliberate, I started planning prosthetic days, wheelchair days, mixed days, depending on my pain, how my skin was doing, energy. On prosthetic days I kind of give myself time to warm up, I do a little dance to get me all motivated and ready and then I find somewhere to go that has benches at a stopping point or like all of the planning that goes into things to be able to be mobile is a task in itself. I really have to plan when I'm doing things, checking in with how my body is feeling and that can look different for wheelchair days, prosthetic days, mixed days, like I need to plan my days and my weeks of where I'm not in a cycle of getting everything done in the morning and burning myself out by night or getting everything done in the first half of the week and then by the end of the week hardly being able to get my body out of bed because I'm just so fucking exhausted. It's like all of these things take a lot more kind of life admin than what people maybe realise. Before I head out I'll do a quick scan of parking, curbs, likely kind of choke points, so places that say they're accessible but you turn up and there's a surprise set of stairs, parking somewhere and there's not any dropped curbs to get onto the pavement. Even looking on google maps, if I'm going to a shop, can I actually get into that shop or is there two steps outside of it even though it's listed online as being accessible because that's not accessible and when it takes so much energy to go out and do things without that planning usually, maybe at times when I'm being more spontaneous, it can really upset me when somewhere is listed as being accessible and it's taking effort and energy to get there and then you get there and it's not actually accessible, the doors aren't wide enough, there's not a disabled toilet, like all of these things add up and I think that's why it can be exhausting as well because it's not just a physical toll but a mental toll, trying to budget my energy, kind of treating it like money, spin theory, if I spend big on mobility appointments, wearing my leg, going out for a walk, walking a kilometre, going a longer roll in my chair, something else then needs to be cheaper so socialising, chores, life admin and kind of realising that that balance and trade-off isn't a failure but it's a way to stay functional, like the goal is not to do everything, it's just to do the right things without crashing and burning myself out which is really difficult especially at times when there is a lot of things going on and I feel like my brain is very go, go, go, that's when I end up in cycles of getting everything done pretty early on in the day and crashing out or doing things for Monday, Tuesday, Wednesday and overdoing it all three days and then Thursday, Friday, Saturday I'm in my bed in pain wrapped in my heated blanket because I've pushed it too far and it's a kind of juggle to consistently plan and problem solve even something as simple as going to the shop requires checking routes, pacing, what are the potential obstacles, if I go to Asda late at night, yeah it's quieter with people but there's more boxes and things to manoeuvre around because that's the time that they're stocking the shelves and sometimes it's so bad that you can't even get up and down aisles without trying to find somebody and ask them to move and if I'm going to the shop to avoid people I don't really want to then be going finding people to move things like it is something where there are still times I think in an able-bodied way like the other day when I went and I got my nails done I was going to message a girl saying like oh when I'm coming do you want me to pick you up a coffee? I know there's another girl that works with her so I was going to offer to like grab them one and grab me one too but how the fuck am I carrying three cups of coffee whilst also pushing myself in my wheelchair like it's then also not safe to place it, whoops I've just bumped microphone, it's not safe for me to place it on my lap and move about because hot liquid scald my leg if I tip it over so it's things like that usually really small things where I think oh I can just do that and then it's like no babe you're disabled like you actually need to think of a different way to do that now and although my accident was six years ago this year and three years ago being an amputee there are still things in everyday life that maybe it's just that I've not done that in such a long time my thought process is that to do it as somebody who is not using a wheelchair or who still has two legs and it really has to be an intentional thing of no I need to think in a disabled mindset like and I think people hearing that maybe that sounds like I'm putting myself down or like putting myself into a box or like labelling myself or making disability my personality or whatever but like this is my life if I don't take into account disability and I do say go pick up those three coffees and then I burn myself that's on me for burning myself and then I'm probably able to do less because I'm in more pain because I've burnt myself by carrying hot drinks because I wasn't thinking about it in a way of disability so yeah I think that kind of it's been a work in progress from the accident to kind of getting to here because especially with the frame I was housebound a lot so I just kind of found ways to make things work and now it's kind of still doing that finding ways to make things work but also realising that sometimes the way I think it is going to work out is not actually what it's going to look like another example is me thinking putting my leg on and doing the pressure of my tyres in my car would be like a quick exercise task to do and it then ended up taking me 50 minutes and I had to take a four hour nap after it because I was absolutely fucked it got to the point my next door neighbour who hardly ever comes out his house now actually came out when I got to the last tyre asking me if I needed a hand because I'd been circling around my car for ages and I'm just like no I thought this was going to be five minutes and now it's been 45 minutes and I am fucking gubbed so it's things like that learning as I go making adaptions but also having to be consistent in that because there's sometimes I'll do things and I'll think fuck I've already done that before and it didn't work out but then I'm doing it again and it can be one of those things like it's frustrating because it's a bit like living on hard mode you do things and then you're like oh fuck I need to do that again and then that's frustrating I actually have a point in my notes about problem solving and challenges but you know what I think I've just kind of fucking ticked that off of that rant a big thing for my amputation anniversaries is body image comfort what that feels like for my first two ampuversaries I did a boudoir shoot for myself and I decided not to do it this year because I didn't really feel like it was necessary like I kind of got what I needed from it the two years before because having the frame really had an impact on my body image I was always somebody already that didn't like how I looked I wanted to hide away I would hate being in the shower or the bath because I would have to look at my body like just self-hate not liking myself at all and having the frame on really kind of amplified that I just felt before as well before the accident I was also kind of in a phase of trying to make myself as small as possible and shrinking into the background and that meant wearing a lot of black or muted colours and now it really is a thing of like I wear what's comfortable to me like with the frame on I lived in a nightdress wearing oversized skirts that ended up ripped holes in them from the frame and amputation really did kind of flip something like my start my scars tell my story I finally feel gratitude towards my body for everything that it survived and endured I started to experiment with clothes stitching the skinny jeans because the frame felt like it was trapping and never again will I wear a fucking pair of jeans that I feel like are death to wear really like I would never before of wearing like bodycon dresses and having it like stick to my body because like growing up around slimming world and weight loss culture having a belly was a negative thing but like it fucking holds your organs and whatever so like my body got me through what it got me through and I'll wear whatever I'm comfortable in and that means crop tops or bodycon dresses or flowy skirts or like whatever the fuck I want because it's what I'm comfortable in like having my spokes on my orange chair all colourful and I'm getting some purple um rim covers today which I'm so excited about because then it's just like even more colour even more personality and when I'm out and about it makes me really happy because people ask oh like I get a lot of compliments on my spokes but a lot of people are like oh my god where did you get them my son's in a wheelchair my niece is in a wheelchair they would love something like that just so it's their personality and it's the fact that they're so cheap off amazon I'm always like amazon five six quid you can get so many packets these did my wheelchair and my best pal's wheelchair but they take a lot of effort to do it took me like four hours the first time I did them so prepare for that but it's great because you can switch them out and you can change it up and it does match their personality and it is something that makes me really happy like even talking about it I'm so animated because I'm like but that's like comfort for me when things are comfortable having mobility aids that match my personality and having a home that feels safe like home to me is safety it's simba it's creating a space that feels like it is fully mine it's the sanctuary that I wanted when I was always growing up and I'm really really fucking proud of how it is all coming together because comfort is freedom whether it is me with a messy bun wearing joggies or bold becca with a rainbow eyebrows and wild makeup it is painting on the walls where the brain feels a little bit messy but it is a better thing than tanning a bottle of alcohol or self-harming physically it is reshaping my environment and finding a really healthy outlet for emotions comfort for me is being able to be unapologetically myself I've started noticing how much I value sensory and emotional consistency at home light and texture sounds even smells all contribute to a sense of stability but I didn't really realise I needed until I had to totally rebuild my environment around accessibility and my own comfort what have I learned about resilience and adaptation through being an amputee resilience is not just a one-time thing it is a constant practise prosthetics have problems they might break wheelchairs get stuck energy dips pain flares up each situation demands a different and new response sometimes adaption works and sometimes it doesn't and that means acceptance then has to follow I've realised that things that I can do now may not be possible in a year or five years and that's okay some weeks I feel absolutely fucking unstoppable I'm smashing through my to-do list and then there are other weeks where I am just flat out struggling with fatigue and only really managing the basics before my accident I really thought that struggling made me weak I hid the mess I feared that people wouldn't see me as somebody being put together even though I know I really wasn't but I'm a lot better now at admitting when I'm struggling I know my strength because I have survived things I can barely even comprehend in hindsight that happened the resilience is what carries me forward it is proof that I can build a future that looks different from what I imagined but still extremely meaningful to me I've also come to appreciate the emotional side resilience is less about pushing past pain and more about recognising what my limits are setting boundaries and forgiving myself for needing space it is not a linear process in any sense and that is something that I feel like I'm becoming a lot more comfortable with because it not being linear was something that I used to kind of tear myself down for why am I not further forward why am I not able to do this why can't I do what they can do and it is just a case of it is my journey and I will figure it figure figure I will figure it out in my own time but even if I don't figure it out that's okay too like there is so much space for things in my life how have my priorities and values shifted so I think I mentioned this in the last episode my kind of life update that life before the accident was overwhelmingly nursing focused it was my passion my purpose the reason that I get out of bed every morning and recovery changed that for me finding my voice and realising that I could speak bluntly without fear made me see that returning to healthcare as a career would likely push me to breaking point so my priorities shifted from surviving in a demanding profession to surviving as a person loving authentically and being able to manage my own well-being before thinking about managing other people's well-being survival mode had taught me habits that I then had to take accountability for and figure it out I accrued a lot of debt and a big part of the new phase of life that I'm in is like I just said correcting those choices paying off what I owe establishing financial stability and being very deliberate about my self-care boundaries for me have become a non-negotiable I am committed to better communication being very transparent about expectations in relationship and prioritising people who match my energy instead of draining it it has been really empowering for me to be able to separate obligation from choice and notice the difference of weight in my mental load investing in myself has really become a priority for my adult disability payment redetermination and some back pay I am actually along with my anti-slip rim protectors I have for the past two and a half years wanted a Garmin watch because it is able to record pushes and wheelchairs and when I go out and like I do a loop in my chair or I wear my prosthetic I use Strava on my phone which doesn't necessarily measure any of the other things just the distance and because it's on my phone I am terrible for forgetting to stop it when I get back into the car and then it adds like an extra fucking 10-15 kilometres because I've drove home and then I need to stop it and then I need to cut it down and then it's telling me oh you've reached a personal best for your first ever 10k and I'm like I didn't actually do 10k I was driving in my car so I'm getting my Garmin watch today and I am so excited because it gives me more of an idea like what I was kind of saying about energy pacing and thinking about it like money or the spoon theory if I put x amount of spoons towards having a shower in the morning and recording a podcast episode how many spoons do I have left for the rest of the day and on top of my Garmin watch I was also going to get a visible wristband but I've realised that Garmin has a lot of things that will give me tangible data to be able to see how my body works without paying for a subscription and a visible wristband for fuck's sake I keep thinking that because I think for the wristband and a yearly subscription it is about 200 quid which is the same as the Garmin so I'm gonna see how it goes if it is a case where I do need something additional like the visible for um tracking my energy and kind of doing too much and trying to understand when I'm getting into burnout point I think is what is important for me with this and it is I'm just trying to learn more basically so that is really kind of a priority to have more of an understanding of my body and my capacity and where my limitations are and not pushing myself to absolute burnout I also got a pressure relief cushion for my wheelchair but I've been recording for nearly an hour and my arse is really hurting let's see how much of this I've got left still quite a bit let's move on what has changed for me in the past year so I kind of gave a bit of a rundown earlier about year one year two year three so this is just kind of from year two to year three what I feel like has changed in that time so progress feels like it has felt a bit slower in ways every step has been significant and kind of helped me to understand more but the major milestones were kind of receiving my new wheelchair which I got in the September of last year and getting my new prosthetic at the start of this year each of these brought not only improvements but also unexpected challenges that kind of made me rethink routines adapt my strategies and navigate the world a bit differently this past year I feel like has truly been about understanding what is possible for me experimenting with different paths and establishing a clearer sense of autonomy and independence even on days where the progress felt less substantial each small victory still really contributes to this growing sense of um capability and resilience I think independence has been a major focus whilst has been a major focus whilst support has been available I've realised that expecting it from everyone around me isn't always realistic and some people just simply were not capable of meeting me where I was at like I'd kind of mentioned previously earlier on accepting that reality has been both empowering and draining kind of pushing me to recognise my own resourcefulness and resilience and I've had to figure out of ways to manage with the support that I do have I'm making kind of deliberate choices about which tasks to prioritise how to plan my days and how to kind of pace myself and avoid burnout like I've been talking about this process has been full of trial and error but it has helped me to become more adaptable self-aware and intentional in how I approach challenges emotionally I feel like I have matured in ways that I couldn't really have anticipated in the past I would have suppressed difficult feelings hoping that they would fade which only amplified this internal self-blame self-shame dialogue which now I tend to allow myself to experience my feelings fully communicate them openly and revisit complex topics over time rather than trying to shut them down because I've learned that processing is ongoing it is normal for thoughts to resurface and revisiting them helps me to untangle the emotions without letting them fester I feel like this approach has given me more mental space for problem solving self-care and just growing emotionally because it is allowing me to navigate life with a lot more patience and compassion for myself and without this expectation to be perfect my relationships I feel like have also involved I have invested effort into repairing connections and.. Trying to build stronger bonds with people, however, I did have to accept that some people may be unwilling or unable to engage in accountability or consider another person's perspective. Going through the recognition of that was painful, to be honest, but it reinforced that my expectations and expectations and relationships are valid, especially when they are communicated openly and I deserve relationships that are built on mutual respect and empathy. Letting go of relationships that drain or distort my sense of self has really been an act of respect for myself. I've learned that not everyone will share the same values or capacity for growth and that is totally okay because it does not diminish my right to maintain my boundaries and protect my well-being. The last little question that I asked myself, which you might be glad to hear because I have been yabbing, what kind of feelings was I sitting with overall? Finding a balance between gratitude and sadness has always been something that is essential for me. I am deeply thankful to be alive and to be able to build a life that does bring me joy and meaning, but I do also carry a lot of anger and sadness about the circumstances that I've faced, the pain, the losses, and the very fucking complex and traumatising recovery process. Some days are really hard and I grieve relationships that weren't able to be sustained, opportunities that shifted due to the accident, or just the constant hurdles of accessibility in daily life. By giving space to these feelings, I've learned that grief and gratitude can really coexist and embracing both of them really helps me to kind of admire the periods of joy and pride in being fulfilled. Grief kind of shows up now in more nuanced ways. Initially, it was overwhelming, tied to the permanent state of disability and the loss of dreams like recovering to nursing or being able to start a new life in New Zealand. It now kind of shows up in more subtle forms, like frustration over inaccessible places, unanticipated limitations, or the realisation that people just aren't capable of providing the support that I thought was there and that I needed. Treating myself with kindness during these moments has become vital, like I can't even explain, I have had to view grief when it comes to disability and the accident as an ongoing process. I'm a natural part of adapting to life circumstances and unpredictabilities rather than it being a sign of failure and reminding me that growth and change are something that continuously keep going on. There are multiple moments where I have been able to feel proud of the progress that I've made by just completing daily tasks, maintaining routines, keeping my home in order, coping with fatigue, that kind of all represents any kind of tangible achievements. To outsiders, these may seem like minor things, but for me they are milestones and kind of reflecting the resilience, consistency and personal growth that I've managed to kind of achieve throughout this time. And anniversaries and life markers kind of amplify this feeling of pride, being able to reinforce how far that I've come and the strength that I've managed to kind of cultivate during that time. I feel like authentic gratitude for me goes beyond trying to put a positive spin on everything, it manifests in the quiet satisfaction of a day lived fully. The comfort and presence of Simba and the joy of being around people that love me and I love them too. It is the recognition of survival, valuing the second chance that I have been given and appreciating the both small wins and significant accomplishments. Genuine gratitude does not ignore hardship, it exists alongside it. I have marking each joyful moment as kind of profound and deeply felt by being able to pardon me. And I sit down and kind of talk and yap and share these stories because I want people to understand what life can be like living with a disability. The good moments, the tough moments, the everything in between that are just little rants and tangents that I might go off on. When I first started talking about my mental health, probably over 10 years ago at this point, it was about breaking the stigma and starting real conversations. And this podcast for me started about a way to talk about Lazaros and amputation and things that people maybe didn't share openly or they weren't kind of seen a lot because it's a rare thing to happen to people, I guess. And over time, it has started to become a massive part of my healing because there are some episodes that I've sat down and hit record and it has been so difficult for me where I've cried and shared feelings that at times made me want to be fucking sick. But it's one of those things where if somebody is listening to this and feels less alone, then it's worth it. That is, that's the thing for me. If people listen to it and they take something from it, then I'm happy. I am really grateful for the tools that led me to share these stories. Having a camera phone and a microphone set up, it kind of allows me to think and process and find a way to communicate more clearly. It gives me a way to organise my thoughts and my feelings and make situations feel a lot less overwhelming to me. Talking through these experiences helps me to make sense of my own life whilst also kind of connecting with others who might understand or learn something from my journey. Yeah, thank you to those who listen along, who interact, who like the videos. I recently just hit 85 subscribers, which might seem really small, but to me, it's growth, it is connection, it is proof that what I'm doing matters. Because I think this year when I started, I was at like 40, maybe just below 50 subscribers. So that's nearly double in being consistent and yeah, that is exciting to me. Because living with disability changes every part of my life, how I move, my routines, what matters to me, my relationships, how I see myself. And sharing, kind of, these things helps me to get a sense of my experiences and also give a life into what, you know, give a window into what my life with a disability actually looks like. It's not pretending that everything is perfect or positive, it is about honesty and understanding and human experiences. And yeah, if you have enjoyed this episode, listen to me rambling on, like I said earlier. If you have any recovery things, anniversaries that stick in your mind, I would love to hear about them, either below in the comments or you can send me an email to cripplechroniclespod at gmail.com. I am hopefully going to be getting on to the kind of video essay about euthanasia and the ethics around that. There may be another episode in between that because with all of the work I've still got to do for that, I feel like it's probably four weeks off at this point and I'll need to record something in there for consistency. So yeah, I don't know. The next episode will be in two weeks time, who knows what it will be about. It might be about euthanasia or it could be something completely different because never know, Rebecca, sometimes I sit down and I think, I don't really want to record anything that I've planned, let's just start yapping. So yes, have a lovely week, look after yourselves, like, subscribe, do all the supportive things and I will catch yous next time. See you later. Bye!