Tag: covid 2020

Posted in Archive, July 2021

Acceptable Collaterable Damage for Freedom Day

Posted on by dystoniaandme

With Freedom Day ear marked for July 19th and the majority of restrictions being casually tossed away one would have thought we were turning a corner where the public as a whole could breath a sigh of a relief. But with herd immunity being discussed again, talks of case numbers reaching 100,000 daily, it has to be asked are we offering up our disabled, our elderly and our unvaccinated under 18s as collateral?! Its worth remembering that six in ten people who have died of covid in the UK were disabled. The disabled community have been hard hit throughout this pandemic and failed by our government.

As a household two of us were classed as clinically extremely vulnerable and had to shield, perhaps it’s unsurprising that I’m not celebrating freedom day. I am double jabbed and have a degree of protection, but my four year old son who also had to shield, whose school seems to constantly have new cases, he has no protection from a vaccine yet the government suggest classes will no longer have to isolate?! Madness!

The term Freedom Day keeps being tossed around but what freedom is there truly when there is also talks of introducing shielding again for the clinically vulnerable this winter. I’ve spent 14 months shielding already. I understand why people are clammering for to get their normality back, yet surly little and gradual is better than throwing fuel on the fire?

We know so little about Covid-19 and indeed long covid. Can our primary school children/younger generation develop long covid? How will this impact in the long term?

Personally for me I’ll still be wearing a mask in crowded areas/public indoor areas, and keeps a distance from other people. I know people will think I’m over reacting however this is what I believe is best for my family and myself and until covid cases etc are much lower or a vaccine is introduced for children I feel it’s necessary.

Posted in Archive, December 2020

So This Is Energy?

Posted on by dystoniaandme

If you’ve been following my blog for a while, or if you’ve been here since the beginning, you’ll know that pacing (for many years) was like a swear word to me. The doctors threw it around a lot, really pressed the importance of it, but no-one really explained how to implement it properly into my life. I felt like I was being told to sit down and accept my fate of not being able to do anything, anymore. As someone who likes to be busy, I didn’t accept this instruction.


Don’t misunderstand me, I tried. I’d manage a few days of what I viewed as pacing and then I’d slip back into my old habits, trying to live a normal life of activity with no adjustments. The consequences of doing this was that I hit that ’empty spoon’ wall hard and often. Each time regretting it as I then took days to recuperate.


I’m currently coming towards the end of the 3 diplomas I’ve been studying, in Health, Wellness and Life Coaching – specialising in life management with chronic illnesses. I’ve loved the course itself but seeing the difference applying it to my daily life has had, has been amazing. It’s completely changed my understanding of pacing and therefore helped me to apply it to my life with ease.


Yesterday, for example, I was feeling much better than usual so I asked my son what activities he would like to do. I had already decided I would say yes to whatever he chose to do and would find a way to adapt it if needed. He asked to cook with me. So we got the soup maker out to eliminate the amount of cutting and hot heavy lifting of pans. He loved peeling the onion and garlic, cutting out the amount of herbs. It was a gentle session, sat down and full of laughter.
I know energy filled days won’t always be here even when I’m 100% on track, but by pacing, asking for help more etc.it reduces how often flare ups will happen. It’s making a huge difference not just to how I’m coping physically but also to my mental health which has had a real boost.