An extortionate lunch.

My pain seems to be receding a little today. I use the word receding because that’s what it feels like – my face and my jaw aren’t quite so bad, though my half shut eye will try to tell you otherwise. The pain is largely around the back of my head and a little over the top and side, as I say, receding.

I had my tuna roll for lunch. It can sometimes feel quite daunting making food from scratch, and I know that can sound quite silly to some when I’m just discussing making tuna mayo with sweetcorn and some par bake rolls in the air fryer. But as a task that is often too much for me it really can seem daunting because I can never fully predict its impact. For instance a few weeks back, when I was laid up for a long period like I am now, the thing that brought it on was half a bowl of washing up. Nothing wild, just a few plates and mugs that I thought I’d clear so mum didn’t have to when she got home from work. But that simple 15 minute task fucked me up for over a week.

So I made my roll and I’m in a bit more pain. I sat up whilst eating and remained that way for about 45 minutes. I don’t do upright very well, it always brings more pain, but I try to do this every day at some point. Now, as my pain is higher, my neck is sore, my wires are pulling and my belly is full, I can’t help but wonder just how many spoons I’ve just used. The task of getting out of bed and down the stairs is definitely a spoon. Then another spoon can be attributed to the making of said tuna and whacking rolls in the airfryer. I think the sitting up to eat and staying that way a little longer probably cost me two spoons. Which, personally, I find to be a fucking ridiculous amount of spoons. You could almost consider it reckless accounting. Or reckless spending.

Mums working from home today and while making my lunch she apologised because she hadn’t bought me any pot noodles. I immediately dismissed her apology, reminding her it was me who told her to stop buying convenient food. It’s not good for me, it’s just filling a hole with something that doesn’t nourish my body. I need to not have them to be encouraged to make better choices. Even if it does cost me some extra spoons.

Sitting up I often assess exactly what my body is feeling. I like doing a whole body scan, it’s my favourite meditation and really helps me get what I’m feeling across to doctors and surgeons. I was thanked for my ability to describe minute changes in my implants stimulation during my last reprogramming. But I digress. What I feel in my head and neck when sitting up is that my neck just isn’t strong enough to support my head. My head feels impossible heavy. When with friends I will often have my head on my fist to add support so I can stay that little bit longer. And this isn’t a post op situation, though it certainly made it worse due to all the damaged tissue. This has been ongoing since the vaccine and the start of the decline in my mobility and strength. Which seems rather strange for someone who could bust out reps with 120kg on my back not too long ago. It’s why I’m still fighting the NHS because joint hypermobility just doesn’t account for the suffering of my body. And I’m very aware I only get one body. Perhaps when I pass and my soul finds a new body to inhabit it’ll be in better condition. But right now, with my, my, consciousness, I will only ever know this body and I’d really like to see it working for me again. Not least to see an end to my suffering and counting of spoons, but because with a functioning body I can really do a lot more with life and I think aside from ticking off my own bucket list, I can also play a bigger role in helping others who have gone through this, or are going through this, or will one day be going through this.

But until then I’ll be returning to my horizontal resting place to read a little more, whilst looking at the washing that I very nearly remembered to take down with me when I made lunch.

Laugh at the fart.

When someone becomes chronically ill, aside from the obvious changes to their life, there are sometimes other impacts that may not be quite so obvious. They may creep up on them, those around may not quite realise the severity or assume the change is an obvious consequence to their health.

The change I’m referring to today is their ability to feel joy. And not just feel it, but to accept it, embrace it and want it. That last one may seem a bit strange, but bear with me on this because it really is coming from a place of experience.

I’ve mentioned before that last year I had a therapy session, in fact I had many, that were focused on joy and fun. My sorrow at feeling like I’ve missed out on so much fun, that when I am better will I have missed it entirely? Will those around me, whose lives have continued, still want to repeat the fun with me when I am better able? We of course deep dived as we always do and got down to the root of the issue. This particular session started with ‘I don’t know how to feel joy anymore’. Later after much tapping my therapist asked ‘what stopping you from feeling joy?’ And without consideration my response was ‘I don’t think I deserve to’. A terribly sad statement, wouldn’t you say?

Of course, I know I deserve to feel joy and have fun. At least, I do now. But in that moment, and for many before, I didn’t believe I deserved joy. How could I possibly accept any joy into a life that is so surrounded by suffering? How could I allow my suffering and darkness the opportunity to taint the joy? How could I enjoy fun knowing the consequences it would have? So I subconsciously decided that joy didn’t have a place at my table. That’s what I mean when I said about not wanting to feel joy.

For those who have never felt this it may be incredibly hard to understand. I expect many who suffer depression might have an idea of what I’m talking about. Those who don’t know may assume their loved one is a bit down about their health and may not be in the mood to laugh. But how long can that excuse remain valid? I mean of course it is valid, but I mean at what point does it become a greater concern?

My goal, and it’s a very simple one, is to ensure that each day I get a dose of joy or fun. It can be as simple as sharing a meme, laughing when I see friends (truly laughing!) or playing with the babies, children and dogs in my life. All these things I can get my recommended 10cc of daily joy. I currently accept that fun has to be tailored to my health, and I continue to process the grief of that. But that doesn’t mean that I can’t bake with friends, do messy science experiments in the garden with god goddaughter, arts and crafts with friends or a zoom session with members of UKCVFamily. Dark humour brings me joy, and it is often in the most inappropriate times. But I don’t care, because if anyone deserves to make a sick joke at bad timing, especially if it’s about my health, then it’s me and anyone else who’s suffering.

I can feel my suffering and the grief and remorse that comes with that. I can feel my sadness and sit it. I can do some tapping and tell myself ‘I’m ok, I’m safe, and I love and accept myself exactly how I am’. It’s hard, it’s really fucking hard. Some days more than others. But I can now accept joy too. My loved ones are all willing to share joy with me and have fun at a level that I can manage.

I just want to say that this path is not easy. I’ve had health issues since I was a young teenager, but this situation that floored me happened 32 months ago and I’m still learning. I’m literally talking about a healing process that has only led me to accept joy in the last few months. Joy is new to me all over again, like the first time your kids laugh at a fart. I’m 30 and I’m suddenly that kid again, laughing at all the farts. (Not that farts ever stopped being funny to me!)

I’m incredibly lucky to have the support I do and to feel so much love. I know not everyone is quite so lucky so I hope my writing and sharing these battles helps others. Not just others suffering, but to give a voice to those suffering that can perhaps give their loved ones an insight to the internal battle they’re having. The greatest advice I could give is to give space for all your feelings, each one is valid, but remember that everyone is deserving of joy. Laugh at the fart. And maybe if you’re reading this and thinking of a loved one then perhaps arrange a little fun that is manageable for them. Help them remember that they can still have fun, it just looks and feels a little different now.

A friend shared a quote with me this morning that really resonated and explains why I write all this babble and share it so openly. Thank you Tracy.

I recover out loud so those that suffer in silence can see the threads of hope woven among those of pain.

JD Lynn