Repetitive ranting rambles
(^ a bit like how life can feel sometimes for us all)
hard work
Today (some random day in the past whenever you’re reading this) was hard. Why was today hard?
- woke up feeling like I’d been hit by a bus and very out of breath
- needed to eat breakfast but it was SO much effort to even think about getting a bowl out (I force myself through the pain & fatigue to eat breakfast even when it’s hard because otherwise I will have to suffer the consequences later on like palpitations/shaking/lightheadness so it’s not worth it)
- Mylo barking whilst I was in the shower
- my dress felt too tight on my arms and chest, felt like my breathing was being restricted
- I was so breathless
- struggling to sort my hair - even just spraying dry shampoo and making it look presentable for the day (would really like to have washed and dried it but pfft!)
- Mylo jumped up at a stranger on the beach & was terrified at traffic, then I felt guilty. I was unaware but I was also extremely fatigued so had little in me to deal with it & be always training him (*Immediately googled dog skills classes when I got home* … I forget that he did eventually settle in a cafe and walked back to the car SO well but the other parts where I was stressed got stuck in my self critical brain that tells me I’m failing as a dog owner 24/7.)
- I’d forgotten some bits in the shopping earlier in the week so really needed to get them to be able to put dinner in the slow cooker but the village shop may as well have been 500 miles away according to my breathing and ridiculous heavy, painful legs.
All of these things, it is (was) just all too much. And these are only things from that day — the rest of my symptoms and silly brain thoughts waited until I got home to surface. The best way to survive the rest of the day is to completely rest. Stop and rest.
rest
rest
And more
rest
stagnant
The thing is though, I often (ha, who are we kidding, probably ALL the time) resent any kind of rest. I’m still not okay with the fact that my full time job at the moment, and has been for nearly 3 years now, is resting and recovering my body. I have to accept that in order to move forward. However, getting outside, spending quality time with loved ones & the dog, and doing things I really enjoy doesn’t seem to be getting me or my body to recovery any quicker. I need these things to keep my mind fresh but I need these alongside absolute rest. Lying down in a dark and silent room kind of rest.
Because I can assure you if willpower got me better then I’d be the first there because I could. not. will. my. body. any. harder. to get better. But that rest is neccessary for where I am right now, it’s just that that part is the hard bit to remember when resting in itself is trickier than just going for a cosy lie down.
Instead, I’m feeling like I’m stagnant or even stepping back in a world that is moving forward at a million miles an hour. I’m aware relationships are changing because of my disability. I feel worlds apart from what those around me are experiencing, I feel like my life isn’t relatable to everyone and as a result I have to work extremely hard to relate to lives that aren’t like mine. I still do, because, empathy and interest. I try every single day to be honest when people ask how I am. I lack motivation and interest in things because it does not feel like progress is happening fast enough, let alone at all. I honestly don’t feel like I’ve reached the ‘acceptance’ stage of having a chronic illness and now nearly three years since I contracted Covid for the first time, I don’t know if at any point I may feel like I’ve accepted it. Acceptance doesn’t necessarily feel like the right word for me but more living with it, is how I view it. So when people ask me how I am, for updates on my illness, or if I’ve consulted the Dr again, the answer always feels like ‘no, I’m trying to just live with it’. It is the truth but it is a hard truth to admit and to repeat. We all so desperately want advances towards a cure, or even something like 50% better quality of life/alleviation of symptoms than I have to endure at the moment.
And ‘just’ trying to live with it, is blimmin’ HARD WORK.
The most important thing though is that conversation allows for all of this, all of this that I can or can’t do, all of this that I’m interested in for others and all of this that I’m interested and invested in for me, my life and how I live now. Talking, as we all know but rarely like to admit, does help. That means talking about the good, the bad and the really ugly too.
glimmers of joy
I’ve recently really worked hard on looking for moments of joy (I recently read somewhere these moments referenced to as glimmers, which I like as that feels more sparkly) in day to day life like getting that good fresh Cornish air, the beach, pretty skies, delicious food and as well as any moments where I’m feeling more at peace with resting. Recognising and capturing those moments to share photos of these moments on my Instagram is lovely for me to look back at. Don’t get me wrong, I have to look seriously hard for these some weeks. Still, I’m doing it and these help having them to reflect on during the tougher days.
vulnerability
Wheels, whether they are my wheelchair or mobility scooter, really help in managing Long Covid and I am so grateful that I’m in a position to be able to have access to them but I have realised recently they can’t solve it. They enable me to do more and access more places however using mobility aids comes with their own challenges. Challenges present even when I’m just existing in the seats, this may not be physical on my legs but instead emotional and psychological. I’ve come to realise that when I’m sat in either one of this can be often when I feel my most vulnerable.
This is when my invisible disability, becomes the most visible.
I really understood that I was feeling vulnerable in my wheelchair when Chris was pushing me around London. I often feel this most in my mobility scooter because I can use that independently which is harder with accessing places etc. However, this was more so emotional vulnerability when I was sat in my wheelchair. So emotionally vulnerable, I think, because in those moments I am totally reliant on someone else to help me get through the day. To push me, to navigate, to combat the crowds, to keep an eye on timings for resting and food stops and the list goes on but mostly it feels like my independence is completely swiped from me.
It’s interesting how I can feel so vulnerable, so dependent on others and quite aware of my disability yet my using my wheelchair it was also giving us independence for getting further afield.
We had an incredible weekend heading up for Lord of The Rings Two Towers in concert at the Royal Albert Hall a few weeks back. Combined with dinner with one of my favourite people and a lot of time outdoors in the gardens on a perfectly sunny Autumnal day it made for a refreshing weekend escaping the everyday.
What I noticed when Chris was pushing me either through the gardens or just along the (MUCH) busier streets, that we Cornish lot aren’t used to, was how intimidating it was when a line of people were walking towards us, even only 3 or 4 friends walking together. I suddently felt hyper-aware of the fact that people weren’t moving to navigate the paths or deciding which way they will step to avoid my wheelchair until the very, very last minute. I realised that it’s much easier for those who are walking to simply take a step to the side rather than Chris manouvering and zig zagging us both in and out of the crowds and I considered that they probably weren’t even giving this a thought — it’s just what you do step aside to avoid walking into someone. It’s a different level of awareness when you’re disabled and using a wheelchair. It’s looking up all the time when you’re the one so much lower down physically. It’s having to get someone’s attention before you start talking, and then talking louder as you’re walking & wheeling along, so they can hear you because you’re not just ambling right beside them at the same height and able to converse as easily. It’s always trying to think and look ahead for the accessible routes and the lowered kerbs on both sides of the roads in order to access the right pavements at the right point in which you want to cross. Bit tiring sometimes.
access
The trip to London also came with a long story, which I won’t bore you with now but know it was hard work navigating transport, about confusions for the assistance I had booked. Most staff were absolutely incredible in assisting us. I just had one moment which was rushed and confusing due to lack of communication that makes me realise that accessing trains as a wheelchair or mobility scooter user, just shouldn’t be difficult at all. Access should be the norm for everyone surely these things shouldn’t be any exception by now. It makes it hard to be independent when you can’t 100% guarantee it will go smoothly. When people or companies are seemed to go out of their way for you yes it is neccessary but it does feel like they are doing a favour which inevitably I feel guilty for even though I know it’s just access I’m entitled to. Catch 22.
As an example I’ve now booked some train tickets for another weekend at a later date and using the assistance system again I explained that I know that not all trains can platform all their coaches at my station in Cornwall therefore can we be mindful which coach I’m booked onto etc as I can’t move through the train aisles with my scooter and need to be careful so I can get off the train... Something you’d really think that the system would be aware of given that only manual wheelchairs which collapse to a thinner size can fit through the train aisles.
No apparently not.
Anyway I’ve train booked with my mobility scooter in standard class yet standard class with the wheelchair space doesn’t platform on my outbound journey at my station so assistance is booked but… they’ll sort it on the day. Hmm just imagine booking assistance which you are totally reliant upon in order to travel but not really knowing that it’s 100% confirmed. Nerve wracking when travelling alone. Not because they haven’t tried, but because systems won’t actually allow them to. And you’ve just got to trust that the staff on the day will understand that.
On any returning journey, standard class does platform so it’s fine but I really just struggle to understand why I’m the one reminding them that the train may or may not platform. It’s enough just to think about getting on the train and driving my scooter in the tight spaces.
I actually asked what would happen if I was in the wrong carriage and couldn’t get to a platformed coach… they said I’d have to go to the next available station in order to get off, change coaches to one that is platformed, and come back on the next train up the line TO BE ABLE TO GET OFF AT MY STATION. And we wonder why it’s hard work even with some supportive passenger assistance. Travelling with a companion is so much easier and slightly less stressful which is why I asked about a million questions before booking if I wanted to travel on my own. Please just make it accessible.
Ugh. Tiring just hearing my back and forward thoughts, right?
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If you remember anything from this rambling rant of mine…
- I recently read
Lucy Webster’s book The View from Down Here
-you should all go and read it for yourselves.
2. This is a really helpful watch too
And here we are in Autumn again.
