Long-standing Foggy Followers will know that I fairly regularly ‘step away’ from Foggy’s social media for a few days when everything gets a bit too much. I’ve been doing this increasingly more frequently over the past 6 months. I’m finding that, as a community, we have needed to be very reactive during the pandemic than ever before and that has been harming my mental health. I think most Twitter users would agree that it is a very toxic environment to be in at the moment and I’m noticing more and more disputes in my Twitter thread as each day passes. I’m not in the right head space to deal with that every time I look at my timeline.
The eagle-eyed amongst you will have seen a social media post from me yesterday saying I am stepping away from Foggy’s social media for 2 weeks. I quickly deleted the posts as I thought a blog would be a good way to explain my reasoning. So, here’s the announcement-
I’m stepping away from Foggy’s social media for two weeks.
Here’s why –
- I have been struggling to find my ‘new normal’ since having M.E and Long Covid. The added complications of vaccines and stressful social media posts that require immediate attention have meant that I have been unable to calm everything down and ‘settle’ to a new baseline. I believe a break will allow me to do that more effectively.
- The NICE guidelines review is due to be published on 20th August 2021. I can predict with 100% certainty that all sorts of nonsense will be printed about M.E and C.F.S patients courtesy of the BPS (psychologists & friends) crew between now and then. I am saving myself the stress of having to react and rebut the accusations and false claims. If I don’t see it…..
- The NICE guidance review is going to be HUGE for our community (Still doing a NICE equivalent to a rain dance…it’s not ‘in the bag’ yet). I am going to need to be as ‘settled’ and raring to go as I possibly can be so ‘self-care’ is a priority now, even more so than usual.
My body is definitely struggling with the additional ‘stuff’ that has hit it over the past 18 months. As I have said numerous times, it is hard to know if new symptoms are simply M.E symptoms that I didn’t have prior to Covid19 but have been triggered by the virus, or if it is an entirely different disease/condition – MCAS etc. Either way, there is no treatment; I know that. I have reached the point at which I have started saying ‘there is no point contacting the GP’ about my Long Covid symptoms (16 months).
My Autonomic Nervous System seems to have taken the biggest hit from Covid19. One thing I have been struck by is my temperature control issues have completely changed. Throughout my time as a M.E patient, I have felt ‘icy’ at night and needed to wear thermal socks and have 2+ blankets at night. Not any more. I haven’t worn socks to bed for months and I now only sleep with one duvet – like a ‘muggle’ does! However, I now feel hot…not cold. My ANS issues have now affected my breathing, my Long Covid clinic Respiratory physio tested for all other causes of breathing issues and said ‘there is nothing we can do to fix it, your body, your ANS, has forgotten how to breathe’. I believe this is why so many PWME have told me they also have breathing issues, whether their M.E was triggered by a respiratory virus or not.
Faulty ANS issues have also caused me to inappropriately scream and/or squeal whilst watching very slightly scary TV programmes….funny for me….annoying for my family who have narrowly avoided having heart attacks as a result!
I also have excessive thirst which has been investigated by my dentist and Drs. There are no ‘anomalies’ in my mouth and Diabetes has been ruled out. Again, no explanation other than, my body no longer recognises when I am thirsty so pushes me to drink….all the time. I am currently drinking 4 litres a day. I’ve now been told ‘drinking too much won’t kill you, just try to stop yourself from drinking too much’….cheers!
ME Foggy Dog is a social enterprise (not for profit business) and so I don’t take the decision to step away lightly. Advocacy work is always very important and I feel constant demands on my time 24/7, however – if I don’t look after myself now I may
not be able to continue doing the work I do over a much longer term. Close friends (confidantes – you know who you are – thank you) within the M.E community know that I have been struggling for a while and have spoken about closing both ME Foggy Dog and Stripy Lightbulb CIC to concentrate on myself. I do the day-to-day running of both social enterprises singlehandedly. Something I was able to do, with difficulty, before Covid19 hit me but now I’m not so sure. I’m still taking it one day at a time. At the moment, both my heart and my head hate the prospect of stepping away permanently as I fully recognise the urgent need for both. However, continually banging my head against hard immovable brick walls is starting to take its toll on my personal health.
Thank you to everyone who recognises and understands that ME Foggy Dog is much more than social media posts and who support the work I do away from ‘timelines’ and ‘newsfeeds’. This is the work I will be concentrating on over the next 2 weeks. ‘Stepping away;’ from social media will simply give me much more head space and will give me the opportunity to calm everything down. Keeping everything crossed that I will find my ‘new normal’ in the near future.
Take care of yourselves and see you soon.
Love
Sally
and Foggy (OBVIOUSLY) xxxxx
p.s. Don’t forget that MEfoggydog.org is Foggy’s online home – take a look for merchandise, donating, podcasts, and our news!