It’s M.E. Linda
- “Personal”
I’ve not been so busy for many, many years.
All because I am now the Logistics Manager obtaining all supermarket requirements for 3 vulnerable households.
Weeks 1-5 were horrendous, constant, repetitive supermarket slot hunting, despite having been a continuous weekly online supermarket shopper for at least 4 years.
Eventually, being a delivery pass holder (and therefore very lucky), a routine has been established that I can check on a particular day and time (luckily at 8am and not 11:45pm, like some of my friends) and get a slot, booked ready to take my elderly parents and friends orders for the following week.
Delivery Day is hard. I sit on my kitchen floor surrounded by shopping needing to be sorted, split, and packed into ‘clean bags’. Luckily, other members of the family deal with the deliveries! They drive away with the goods as I just about manage to ring mum and stammer that ‘they are on their way’.
A new pattern to my week has been established but, in order to manage that, I have also had to listen to my body and take some time for more rest using Guided Meditations. With my ‘walking wounded’ type of M.E., I recognise when I have done “too much” and MUST stop.
- “Activism” OR “Awareness”
The ‘chatter’ on Social Media has been about:
isolation,
lockdown
shielding.
For the Healthy, these headings instil fear, frustration, boredom.
However, on Twitter, People with ME (PwME) have commented how this way of life is “just our normal”.
But, despite being very used to coping with a slow pace of life, the changes imposed by Coronavirus have seriously affected PwME by adding more fear yet removing our ‘normal’ support network of carers, relatives and families who would usually be able to ’pop in’ to assist with shopping, cleaning and admin support.
The unsung heroes, the family carers, continue their 24/7 care for #severeME loved ones, but with no respite, no assistance and with all the added problems of shielding their household from Covid-19.
The weekly online grocery deliveries disappeared and became a daily pain through brainfog just to search for a slot for next week or sometime, anytime. Then, if one was found:
What is the minimum spend?
How much is that delivery?
Would specialist food (e.g. lactose free, wheat free) items be available either to order or actually be delivered?
Concerns in recent weeks have moved on to Post Viral issues, #PostCovid19, as the stories are told of patients not recovering quickly to their normal healthy lives. Although onset of ME can be produced from different routes, a large proportion of PwME had some sort of post viral illness which they never recovered from.
Using popular hashtags, PwME have reached out to newly exhausted Coronavirus patients, urging them to ‘take their time’, ‘not rush their bodies’, ‘listen to their bodies’. They have also informed the charities when they have read poor advice for newly recovering patients.
Physios for ME, with the support of the charities, MPs, and Doctors, were swift to produce valuable evidence for Oxford Health NHS Trust* requesting them to remove a damaging leaflet from their website. Thankfully this advice was taken, and the leaflet removed.
Use of hashtags during #MEawarenesshour (Wednesdays 20:00 BST) has offered:
the hand of friendship #IsolatedNotAlone;
advice for slow living with #PostCovid19, #PostViralFatigueSyndrome;
and the reality of living with M.E.
Plans by all charities, groups, and individuals for the #MEawarenessMonth of May have all been shattered, but PwME are still fundraising, raising awareness and ‘talking’ on social media from their homes.
We keep plodding forward, educating one person at a time.
As well as CureME and the UK ME/CFS Biobank’s own social media pages, the London School of Hygiene and Tropical Medicine are also raising awareness of M.E. by writing a short piece about my own fundraiser for their alumni blog which appeared as part of ME Awareness week – https://blogs.lshtm.ac.uk/alumni/2020/05/14/community-fundraising-for-lshtm-cureme/.
It’s M.E. Linda
@HappyHoundHouse
* https://www.physiosforme.com/post/update-on-our-response-to-the-oxford-leaflet
