When will life return to 'normal'? M.E had already made my life smaller but then COVID19 made it minute. I'm feeling forgotten about, I know it's not just me, I know there are millions of chronically sick/disabled people feeling the exact same way. I am having to CHOOSE to drastically limit my activities due to mismanagement of a pandemic.
This blog is going to be about something that has been on my mind for months (lots of months) but it is the first time I have blogged about it. Has shielding and avoiding social contact become my new normal? Seems so.
I miss my old life.
By that I mean my pre-M.E life but also my pre-COVID life. There are differences between the two but the progression from pre-M.E (2005) to now means my life is very, very small. I had gotten used to my life living with M.E, apart from the occasional long-term flare, life had pretty much settled into a manageable routine (remember – I ‘only’ have ‘Mild’ M.E). I still had a sporadic and very occasional social life. My diary was littered with bi-monthly lunch dates, cinema trips, or meals out with family. I even *gulp* managed the occasional weekend away with friends, which of course I paid for with PEM afterward.
COVID19 has taken this away.
Since March 2020, I have met up with my closest friend 5 times. Always for lunch and always outdoors or in very well-ventilated spacious indoor spaces.
Up until about 6 months ago I was ‘happy’ to live this very small life, but I am now becoming frustrated. I know that my frustration is mirrored in many, MANY, people living with M.E (and other chronic illnesses) so I know I am not writing anything controversial. I feel that my life is just passing me by, not because I am too sick to leave my home (severe/very severe M.E – I see you xx) but because I am having to CHOOSE to drastically limit my activities due to mismanagement of a pandemic.
I am seeing increasing numbers of people living with ‘mild’ and ‘moderate’ M.E going out socially or attending face-to-face events and I wonder what they know that I don’t (No judgement – just making different life choices). I have had many moments of thinking ‘**** it, I really just need to get out and mingle’ but so far I have managed to resist the pull of a busy pub or restaurant or exciting new film release. I have missed out on friend’s birthdays, family visits, meals out, and offers of weekends away. But now time is getting on, at the start of the pandemic I was a 43 year old woman who was enjoying the joys of being in my 40’s and being fabulous! In 2023, I am closer to 50 than 40 and I have, what feels like, nothing to show for it. I’ll say again, due to having to CHOOSE a very small life.
It took me over 2 and a half years to get over my first bout of COVID19, subsequent bouts were while having vaccine immunity. I dread to think what a 4th bout of COVID19 would do to my body that has low immunity because it hasn’t been vaccinated or infected since Christmas 2022. I’ve read too much scientific research re. when immunity wanes to not take it seriously.
Those who engage with ME Foggy Dog’s social media will know that 2 of my 3 bouts of COVID19 were caught in my own home. COVID19 was brought into the house by family due to them enjoying a full and vibrant social life. So there is a tiny bit of me that thinks ‘if I’m going to catch it anyway, maybe I should just chuck caution to the wind and get back to normal’. I’m missing out but still catching the virus. The little voice in my head that checks my sanity reminds me that it would mean that I would simply double my chances of catching COVID19! I would catch it at home AND while socialising! I can easily see why some people are on their 7th+ bout of COVID19 if they live with other people (children, family, housemates).
I was told to ‘check my privilege’ by a Twitter/X user about 18 months ago when I said I was still having to choose to shield. Apparently, having the option to work from home BECAUSE I AM CHRONICALLY SICK, means I have privilege. I wonder if that same person, who was complaining about their inability to work from home and subsequent risk to COVID19, has also denied themselves a social life since March 2020?
I am very grateful that I am not ‘in employment’ and haven’t had to travel into work every day during the pandemic, but this has to be considered with my backdrop of chronic illness. The ONLY reason I work from home is because I have M.E. Dropping out of employment also means I do not earn even a third as much as I did being a full time employee. Another life choice that was a very difficult decision at the time but was the best decision I could have made without knowing that a pandemic would be in our future.
I’m feeling forgotten about, I know it’s not just me, I know there are millions of chronically sick/disabled people feeling the exact same way. Weirdly, the only times I have put myself at risk of catching COVID19 have been work-related events that I have hosted. That said, I have always made sure my large (huge room appropriate) HEPA filter is plugged in and working an hour before attendees arrive (I mask up for the first hour and socially distance as much as possible). I have now given up asking attendees to mask up because quite simply…they don’t and I’m pretty sure putting it on the invitation puts some people off attending. They don’t need to know that I am staying COVID19 ‘safe’ as much as possible or that these measures also help them to remain safe too.
I posted about a conversation I had with my Mum’s GP last week – it was liked by over 3100 people – so using it as a dipstick test of the ‘mood’ at the moment, I know I’m in line with a lot of other chronically sick people. I’m sick of being stared and tutted at, I’m fed up with the ‘Covid is over’ comments, and ‘you’re scared of nothing’ idiocy. I’m not scared, I have a healthy, realistic, and well-informed respect for a virus and what it could potentially do to my already knackered body.
I’ve also noticed that I had become ‘shielding apathetic’, I had started to not pay any attention to my appearance as ‘no one will see’, I posted about it earlier today – shielding and this apathy has impacted my self confidence (I wasn’t lacking in that area prior to COVID19! it’s an issue I am unfamiliar with and I don’t like it!) So I am now seeing myself as a ‘work in progress’ so that if/when I can ever emerge from my COVID19-induced cocoon I will be fabulous again! (Foggy doesn’t call me Wonder Woman for no reason hee hee).
Mostly, I miss being me. Full stop.
and Foggy OBVIOUSLY xxx
UPDATE on the global challenge!
Foggy is currently in Canberra and his total mileage stands at 28,915 miles!! Don’t forget to donate!
Keep up to date with Foggy’s adventures and check out his Google Map!