How are you? Yeah fine thanks, you?
Or more like in Cornwall that phrase goes something like ‘Alright? Yeah, you? Yeah. Right on’ — its as basic as it sounds, it really is. But there is always more to it isn’t there.
Arguably not handling it so well at the moment, in fact let’s be honest probably struggling. Struggling with acceptance of the illness, of asking for help on any level and just struggling to not be pissed off at why I feel like every darn day is SUCH hard work. Why does that word feel so final, ‘struggling’? So scary? so ugh? It’s all temporary and ever changing but ughhhhhhh.
struggle is real.
It’s November… I’m trying to do things that I’ve agreed with OH to help myself, trying not to over do it and get that balance again (not sure where I left it, but somewhere pre-summer) but something feels off. In fact not one thing, lots of things just don’t feel like they are sitting in the right place at the moment. This will probably turn into a list of moans of the things that feel off but I feel like they are just the things making me want to cry at the moment. Ps, it’s now January (takes me a looooong time to get the energy to finish a post and make sense of my muddled words).
Lack of work is really rubbish — no feeling of responsibility, not bringing in a steady income, not having those colleagues or other people to chat to, not having stories to tell (children are truly wonderful to work with really), not having a routine, missing my job/passion/career so much.
SO MUCH I CAN’T EXPLAIN.
It’s now been a year since I attempted my return to work and it’s about now this time last year that the process began where I had to take a step back from teaching and went through the process of dismissal on grounds of ill health. Quite honestly, the most heartbreaking moment I’ve experienced for a career I’ve only ever wanted and always worked towards since I was really young. Hard stuff to face, a lot of pride to sacrifice and still a whole lot of thoughts to process & comprehend, even nearly a year on and almost two of not being able to work. I find myself trying to figure out ways I could volunteer with readers or looking online for part time jobs then I catch myself - don’t be ridiculous as at the moment I can’t even tolerate doing a food shop, walking the dog or function in my social life without heaps of planing around rest or being in pain for slightly over doing it. Let alone the fact that concentrating on something like reading or writing this (slowly/leisurely) for maybe 10 minutes at a time leaves my brain and eyes exhausted. One day again, hopefully, but not for now.
MA in Education. My dissertation — whilst trying to move on or push the idea and love for teaching aside for the time but also managing the psychological aspect of not working and to not go insane about my loss of teaching, I’d been trying to plough my education brain into my dissertation. I started it (what now feels like forever ago) but had tried 2 deadline extensions, 1 year interrupted and was about to interrupt for another year… in fact now I’ve withdrawn from my course completely. The January deadline was just not feasible at the pace I attempted to work at because of Long Covid. Yes I know it’s not the same, but at university I never missed a lecture or delayed a deadline, I’ve always worked to my absolute best ability and met my deadlines on time (or early! if you know me well, you’ll know me). This just felt so ridiculous and overwhelming, although totally out of my control (thanks, health) and my course lead very supportive in that I should take my time, I still felt completely ridden with feelings of failure/guilt/frustation/anger at myself, my body and my inabilities. It was too much pressure that I was placing on myself and my sick body so instead I am proud that I’ve achieved 2/3 of the Masters instead and left with a Postgraduate Diploma in Education.
Still a huge accomplishment with my body as it has been.
Pacing & that day to day grind & unpredictability — yes, still doing it and still doesn’t feel like it gets me anywhere other than survival.
Which I guess is actually a good thing really… probably should keep on surviving. But I guess the struggle is, is that it doesn’t help me to feel better physically in the moment. Pacing feels very boring to me now as all the planning takes up energy and that’s before I’ve even attempted said activity or event. When the planning doesn’t come off or there is a change of plan…well don’t even go there. It sends my body into a bit of a state feeling confused and all over the place because I guess it’s just another thing to face. Unpredictability in my symptoms and how my day may go is hard to deal with but I am still striving for a balance and to keep the weeks as calm as possible in hope of eliminating the unexpected.
I really do miss being spontaneous, and I definitely forget that seemingly healthy people can manage more than one activity or meet up of a day. Although it has been an eye opener to show that most people do more than they should and, as a result, burn out because of expectations we put on our bodies that are really quite unnecessary and stressful.
So, non-chronically ill people take note — it is okay to slow your life down. People do and will understand.
How are your symptoms? Is there anything closer to a cure? How is recovery going? Is recovery happening? Most of this is down to me needing to promote acceptance for myself and my own body. Without acceptance my body will try to hold onto a lot of stress and therefore won’t recover as I’m not at peace with the process. Still trying VERY hard to address this and hopefully acceptance is coming, even if in minute amounts. It takes times, some much longer than others so it seems.
It’s been over 2 years, if I haven’t accepted my illness or asked for & accepted help am I really going to do it now? Who knows, but I have to keep trying. Because as much as I despair it, I can’t do this alone at the moment.
Hydrotherapy - tried a local swimming pool but too busy (its always an adventure) and cold, enquired about other smaller pools — can’t download the student version of the portal app but only makes me download as an instructor… just all time consuming and very boring once again. Also, with swimming I don’t have directions on what I should be doing it is yet again a trial and error process just guessing what I think my body can tolerate and a lot of praying that I don’t suffer the PEM (post exertional malaise/the rubbish I feel after over doing it even slightly). As I write this, I’m testing out a tens machine on my painful muscles… yes. I. will. try. anything.
However, now writing this part in January and I have been to a pool again for a 10 minute bob around and it was better this time. Still slow, still breathless, still can’t go underwater or swim properly, still angry I can’t just jump in, swim 3km and go to work for a full day, but nonetheless, I got in the pool because I wanted to. And that’s better than doing it because I knew my OT would check-in, I’m trying to do things for my body out of my own choice.
There’s hope yet with swimming.
Christmas. Hitting 1st of November with Mariah in full swing was a bit overwhelming wasn’t it? Don’t get me wrong, I love Christmas but barely a breath taken after Halloween & before Bonfire night just seemed a bit chaotic.
Money — benefits are just an absolute mission & to be honest it’s just very sad for many people who need them to rely on any income. I don’t even have any energy to talk about that.
Every time I sit on the sofa (which is often) I feel such a relief — The idea that I don’t feel accountable to anyone or that no one may need me when I’m sat here, is a huge relief for my body. It’s hard to describe but it’s like having a safe space to truly let my body rest and this seems to be it at the moment. My body holds it together physically, mentally and emotionally at other times but as soon as I hit the sofa it feels like I can finally give in and surrender to a comfier seat and to rest. I’ve ‘watched’ too many films recently to remember, or at least had them on in the background, whilst feeling like I’m just staring or sleeping.
A lot of my posts have discussed acceptance and my journey to accepting my life, but to be honest it can take A VERY LONG TIME to accept. At least it’s taking me a hell of a lot longer than I’d anticipated.
‘I’m not saying it is, but what if this is as good as it gets Victoria?’
A really interesting thought actually. I’m so worried of other people thinking that I’ve given up on trying to recover if I show that I’m accepting my illness and that by accepting it a lot of people may think I’m just accepting my life isn’t how I want it to be. But, once again, I’m thinking too much of other people when in fact, I want to accept this situation, want to accept my thoughts and many other things and want to be able to live my life to it’s fullest with what I can do.
Acceptance to me doesn’t mean giving up, at all.
Acceptance to me at the moment actually means quite the opposite. I view acceptance as trying my absolute best to enjoy everything I can with the people I want to spend time with. Acceptance to me means enjoyment and living, not just surviving or my body being in fight or flight mode, of which it feels as if it is in an awful lot of the time at the moment. Acceptance to me would be feeling okay with resting because it gives me other happy times and trusting my body’s instinct to fully rest when I feel I need to. It means learning to be happy with life in the slow lane. Acceptance for me would be living in the present moment, enjoying the fresh air, savouring belly laughs and feeling tired from happy moments and honestly, forgetting about my aches and pains of chronic illness, even if just for seconds or minutes, in those moments.
Scooter in the city.
A weekend in London! Yes, on my scooter!
I was nervous boarding but staff were so helpful & then on board it was just very easy. Staff let me park my scooter however I found easiest and didn’t rush me which put any stress aside very easily. (1st class probably helped this as there was no stress of being too busy/people staring/spaces are bigger in first).
Sounds snobby going first class? Only able to afford it with getting advanced tickets and because I have a disabled person’s railcard... which I’d rather not have in the first place. Staff on board were so kind and friendly and when assistance at Paddington didn’t arrive, the train staff held back and helped us off in their own time. Then one member helped us through the barriers & to the tube line - where again staff couldn’t have been more helpful or concerned to check I was confident enough to get the tube & be aware of gaps between the train and the platform (imagine that bit spoken in a high pitched pre recorded train tannoy voice).
Scooted to where we were staying, all easy with Google maps and mostly a straight-line. All was good aside from a huge pile of dumped rubbish combined with a high pavement but after some kung fu style kicking out of the way from my auntie, we made it past. (Please don’t leave your rubbish bags covering the pavements, think of us with a scooter)
- Accessible lift in flat block — hilarious trying to work out how to use it.
- Next lift — VERY tight but we made it.
And the rest of the weekend went a bit like those… some things very easy and others not so much.
The buses were most helpful and easy with automatic ramps to allow me to drive on and off.
We only had once incident where a bus driver wouldn’t let us on because people had stored their suitcases in the wheelchair area and he wouldn’t ask them to move it so clearly the luggage took priority there. You can imagine my thoughts on that… No bother because we got the next bus but still, it shouldn’t have happened.
I managed a solo trip across Covent Garden (VERY bumpy under foot/scooter so a bit of a roller coaster) and down to Adelphi theatre for a trip to see Back To the Future — so worth it and staff were just amazing at helping me with accessibility, storing my scooter and meeting me at the end with it so it was definitely worth the trip.
And to be honest? I would do London all again with my scooter — it allowed me to have longer times out of the house, meant I was less in pain and I got to see my friends. I know London isn’t the most accessible city and I do want to visit other places now, but it wasn’t horrific and that’s the main thing.
On the whole this may feel like yet another negative post (at least I really hope it doesn’t) but when I look back, I’m trying so unbelievably hard to accept a situation I’d never be in, to enjoy and cherish the good moments that I can see glimmers of hope trying to shine a light through the cracks. The swimming because I want to, getting to explore new places because I have my scooter, slowly coming to terms with my body…
The progress. It. Is. SLOW.
However on reflection, I feel this is the first time I’ve felt a glimmer of hope.
And that is huge.
This is all to be continued I hope. My word for 2023 is acceptance and with that I want enjoyment and calm, in so many ways.
I want to make it happen and hopefully watch back at the end of the year (or whenever, because no year is solely highlights no matter how much reels make you believe) and believe in myself that I can make it happen, I can hope, I can accept, I can rest my body, because things can be better even when other things may be utterly s***.
