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I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.
It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.
Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!
I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.
Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).
The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.
It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.