I wanted to write a little about my experiences of the last year dealing with long-covid, because I hope it will serve as a cathartic process and hopefully useful to someone else who is dealing with, or knows someone who has a chronic illness. I will give a rough summary rather than focusing on the gritty details of how I have felt physically and emotionally.
HOW IT STARTED
We all had a tough time of it with the pandemic, and I was very grateful that I could quickly place most of my fitness sessions online and keep training clients. Although the lockdowns were highly stressful with homeschooling, worrying about family and all that went hand in hand with living a very alternate version of reality, I actually felt the fittest I had in a long time. I had time to train for myself and could take part in others fitness classes from the comfort of my own home. I was walking before breakfast, followed by a workout and then full of energy for my day ahead. Which is why it took me by surprise when I ended up in A&E with chest pains. Another 3 more trips to the hospital over the next month, once by ambulance and a cough only developing after this time, I had all the doctors scratching their heads (I only had negative covid tests and no antibodies showing). From this point on I then developed lots of very odd symptoms that ranged from but were not limited to throat/ tongue issues, chronic fatigue, muscle pains, tinnitus, dizziness, tight chest, nausea, acid reflux and joint pain.
I didn’t have great experiences with my GPs initially and there was an element of ‘because your symptoms aren’t text book’ they didn’t know how to help. In one of my 10 min calls to my doctor, after listing all the symptoms I was suffering my doctor simply asked me which one symptom he could help me with today! There was some gas lighting in later calls, which happened to me at my most vulnerable and now makes me rage with disgust at how I was treated and spoken to. Unfortunately there was also an undercurrent feeling/vibe given out that it was in my head, particularly with my throat issues. I sought out a private doctor, who listened and more importantly believed me.
It was only brought to my attention a few months in that it might be long-covid when I was recommended a Facebook support group for long-covid. Reading other’s experiences was like seeing my own. People were suffering from exactly the same odd symptoms as I, and to be honest it gave me a sense of relief as well as sadness that this was probably what was going on for me.
I changed my NHS doctors practice to one who listened and with the help from my private GP she acted straight away in getting me procedures booked in with the hospital that very same day. Lots of testing and procedures came next, but all thankfully showing as normal. Unfortunately normal was not how my body felt. I sought help from some wonderful holistic experts ( dietician, acupuncture and an osteopath amongst others) to help with my recovery as I realised that it may be a bit of time before I felt myself again, and would be able to exercise.
I am still yet to fully feel myself for a consistent period of time, 13 months on. So far 3 weeks has been my longest stretch with energy and feeling normal. Exercise hasn’t yet been easy to do, particularly dealing with the after effects of movement (most often pain) of doing something that at the time feels okay and very gentle in comparison to my fitness levels pre-covid. I haven’t got to the point where movement gives me the same buzz as it once did, or even leaves me with energy rather than depletes it. But I will get there. Slowly slowly but I will get there.
I by no means have the answers for how to feel better, as I am still not back at work even remotely as I would like to be, but there are some things I have learnt which might help others. Either to offer comfort that you are not alone, or as something that might help you.
- Health isn’t a given. Even when you feel strong and fit it can change overnight.
- Having a chronic illness can feel very very lonely.
- People will surprise you, both positively and less so. Clients/friends offered support and messaged me often, to check in, and in the same breath longer term friends just assumed I was better because they hadn’t heard from me. A steep learning curve on who is really there for you.
- Being faced with your own mortality is a giant wake up call and quite frightening when you are a mum to young children.
- Being unwell for such a long period makes me even more determined to be able to help and support women to live their healthiest lives.
- Breath work, as simple as it sounds can have such a dramatic effect on your body and mind. I would highly recommend everyone giving it a try. Those of us who think we are too busy to do it are the ones who need it the most.
- Attempt to change one thing at a time when looking for progress, whether this be adding in a supplement or trying a new treatment. I attempted to do lots at the same time and then couldn’t figure out what helped and what didn’t.
- Write a list of all the things you need to get done in a day, literally everything and then go through it deleting what you really don’t need and delegating what you can.
- Accept help when it’s offered. If you always say ‘no thanks’, many will stop offering.
- Leaning into the sensations in your body and not always fighting them (as I did) seems to allow the nervous system it let go a little.
- Find someone you can talk to about how you are coping/ not coping. There are some amazingly supportive Facebook groups now and one I highly recommend is Suzy Bolt’s gentle yoga for long-covid recovery. Everyone in there is incredibly supportive and there is a positive outlook within the group that I think is helpful for recovery.
- We always think it won’t happen to us. Sometimes it does. Look after your health.
- Doctors don’t always have the answers but most are open to trying to figure it out and work with you. Some (the few) aren’t open to hearing you, have already made their minds up and I wonder why they chose it as a profession.
- Words and actions matter. The staff at Addenbrookes A&E, who were there on my 4 trips (!) were totally amazing, I felt so grateful for their help. Only one nurse reacted in a way that made me feel worse. Language and reactions are important in those scenarios for people not feeling well.
- Never take normal for granted.
- If you have your own business that requires you to physically be there make sure you have a back up plan. Working super hard to create a business you love that overnight has to stop, is heartbreaking.
- Hormones affect symptoms so if you can get help with balancing yours it will be worth every penny.
- When you can’t access exercise for stress relief you need to find other avenues.. I now use breath work, baths, sitting in a swing seat, gentle walking, music, WhatsApping my funny friends/ brother, looking at home decor magazines ( who knew?), writing it down and being by water (the sea/ rivers rather than in a glass!)
- You will learn patience and perspective like never before. Normally we are frustrated feeling unwell for a couple of weeks. Months and even years under the weather brings a whole new perspective.
- Slowing down is a really hard skill to master, but once you do it you will wonder how you ever lived at such a pace.
Thank so much for taking the time to share your experience. Aside from long Covid there are many pearls in here to learn from. In a strange way you have benefited from this experience it seems, all power to you!! You must be quite a special human I think x
Thank you so much for taking the time to read. I agree with you that I have benefitted from the experience, even though it has been super tough. Life will never look the same, and I hope this slowness will remain. x
As a nurse I always find helpful and interesting learning from my patients’ experiences. Thank you so much for sharing yours and for the tips you have shared with all of us. Wishing you all the best 💞
Thanks so much for reading and letting me know. I realise every person will have a different experience with long-covid, but I am hoping some of what I went through and learnt, might help someone else out there.