things that are helping with my Long Covid / burnout

Sleep. I am sleeping more now than it seems any human should be able to sleep. Sometimes 18 hours a day. Right now sleeping is my main job and other things happen around it. I am lucky that my life is set up in a way that this is possible. I now have days where I’m awake all day - no naps! - but usually there are one or two days a week where I don’t leave bed and I sleep throughout the day and night, waking up for a few hours in between to read / watch telly but nothing else. After a day like that I will wake up with life in me. It feels like a reset.

I’ve heard it explained that when you are in extreme fatigue your body is emergency mode and when you come out of that (as I think I have) you feel the healthy exhaustion of your body actually needing to rest and recover from the state it’s been in. Now it feels like the rest I’m doing is healing.

Yoga Nidra. These are the videos I do from YouTube. I think they have really helped. They are extremely relaxing for the nervous system. I sometimes follow a Yoga Nidra with a Joe Dispenza Placebo meditation, then go into a sleep and wake up feeling like some solid battery recharging has happened. I tend to do them mid afternoon, when the tiredness and pain is creeping in or I do them before I go to sleep at night. If I wake up in pain, I will start the day with one.

Acupuncture and massage - a local place does good prices when you buy in bulk and this summer I could afford to do that, so I’m still using these sessions. The massage is brilliant for the pain. I don’t know if the acupuncture helps but I keep doing it anyway. I’m amazed at how the doctor can feel your pulse and list out all your symptoms. At the beginning I was diagnosed with a Chinese Medicine version of ‘You’re fu*ked’ but now they take it and seem less fussed, which is a good sign.

Craniosacral therapy - There have been times I feel like I’m getting better and then I crash and I feel scared and hopeless and like - is this my life now? How am I going to live? Pay bills? On one of those nights, I found myself googling “Craniosacral therapy Hackney” and have had three sessions. I think they are wonderful. It is so subtle. She puts her hands on my feet, under my back and then on my head and I don’t know why but stuff happens. I feel fizzing in my feet, pulsing in my hands and I come out feeling like something has really changed in my body. Again, I think it's nervous system stuff.

Health coaching - It was another midnight despair moment that helped me remember that I was Facebook friends with a health coach who recovered from twelve years of ME and chronic pain. Fiona is an actual angel. For the first few sessions I would just get on zoom and cry. Cry, cry, cry. I was so scared, overwhelmed and ashamed of the state I was in. If she did nothing else but give me a safe space to cry like that it would have been worth it.

Fiona’s approach is about understanding the emotional issues that might contribute to physical symptoms. She encourages me to notice what is going on when symptoms are bad - did something upset me? Did I suppress that? Was I ruminating? Sometimes I cannot connect symptoms with emotions and other times I really can. She has taught me about how shame affects the body - writing a book about sex tipped me into crippling shame - and how damaging it is to constantly suppress your needs and feelings.

Friends and family - I should have applied for benefits but I kept soldiering on, thinking I’ll be better next week, next week, next week. In October I borrowed money from a friend and my sister has helped me too. They are the reason I can afford the treatments that are helping me. Most people are not this lucky.

At one point my 78-year-old mother was coming in to do my dishes, because it was taking too much out of me to stand at a sink. She batch cooked chicken soup. I felt really ashamed of that too - I should be helping her, not the other way around.

My sister has been brilliant in her no-nonsense clarity. I have found it hard to judge what I am able to do. On good days I think I am cured and can do anything, which gets me in trouble. I now rely on my sister to say ‘No, you cannot do that.’ In September she told me that until January, I was to consider myself ill and to do nothing. This was a huge help because it allowed me to drop the pressure of every day wondering if I’m well enough to go to a friend’s birthday, well enough to do that talk, well enough to say yes to that thing in a months time. The rule that no, I am not well enough has freed up a lot of energy. I do two/three days of work a week and around that, I rest. Full stop.

Acceptance. Ok this is a work in progress. There have absolutely been months of shame and self-pity around this being how life is. I can have a cry when I have a few good days followed by a crap one. I try to figure out what I did ‘wrong’. I didn’t drink! I slept 16 hours! I am a walking talking broccoli (without the walking) - why is this happening again?! But I am learning that that doesn’t help. It is happening. End of. And if I let go of the idea that life should be different to how it is, I can see that even with all the Netflix fatigue-filled days, my life is still beautiful and charmed.

My energy might be low but I have found myself living on a street surrounded by people I adore, who come to see me when I can’t leave the flat. I live opposite a coffee shop which I walk into and get a round of Cheers-style hellos. I can get my social battery filled, and be back in bed five minutes later.

I might be in debt but I have a warm, safe flat and the bed of dreams. I live in a safe country, with family who will always look after me. The worst that will happen to me is that I am not able to work at all and I move back in with my mum. I only need to spend two minutes looking at headlines to know that my version of hard is a heaven to most. And I’m not saying that to minimise the crappiness - but just to see the truth of it.

I have also realised - much later than I should have - that we all have our invisible challenges. I don’t think anyone who sees me in the coffee shop would have any idea what my life looks like behind closed doors - just as I don’t have any idea what their life looks like. I am far from the only one dealing with Long Covid and some form of burnout. And I am far from the only person affected by a chronic health issues.

I have a neighbour who has had chronic fatigue for years. ‘I used to run marathons,’ she said. ‘Now getting to the bathroom feels like a marathon.’ Until I got ill, I didn’t know that she struggled that much. I had never asked her for details.

I have friends who have bi-polar, ADHD, autism, social anxiety, OCD, insomnia, chronic migraines - and I don’t think I have ever taken the time to understand what they are living with. Not really. I hope I will ask more questions now. I’m realising that it’s a huge help just to let someone speak about the stuff that we think we need to hide.

I have hid this sleeping, struggling part of me because it feels shameful. But it isn’t shameful. It’s human. And I don’t want to hide it anymore.

That said, there have been moments over the last few weeks of feeling really well - and God, it’s been a joy. Last Friday I did a full day of work and at 7pm I was sitting on the sofa and had the thought, ‘I could do something!’ I forgot that I was someone who could want to do things! Let alone at 7pm! Some mornings I work at the coffee shop and my brain pings with thoughts and connections like it used to and I feel excited for the future.

Right now I’m typing in the coffee shop next to my neighbour, who is planning his friend’s hen do. A jazzy Christmas song is playing. I’ll soon go home for a nap and probably wake up and watch a Hallmark Christmas movie. Doesn't sound bad at all, does it?

xxxx