So, we are in the middle of a pandemic...
I work for the NHS and for weeks, was helping where I could with the strain this current situation was adding to our systems while avoiding direct contact with infected patients as were 100s of other dedicated workers with chronic disorders affecting their immune and respiratory systems. Lots of internal NHS risk assessments were undertaken, the mini me was going to school and enjoying it.
But, last week, after discussions, the Haemoglobin network decided that all people with haemoglobin disorders and not just HbSS should be undertaking the advised shielding protocol (staying almost exclusively at home with their families for 12 weeks). As of Weds 1st Apr I began by shielding and the mini me joined me at home and now we are trying to find our feet. I know that I should be grateful that I have extra time with my little one, time to rest, time to complete tasks etc but unfortunately I feel a huge amount of guilt, helplessness, frustration and it reinforces the negative feelings that having chronic disorders can cause anyway. Also not sure what impact this pandemic has on my drug trial so fingers crossed we can continue!
So for now, I am trying to be helpful by doing as I'm told (yes, I know, I am not the best at this thank you friends, I can hear you laughing...), stay home, keep in contact with my friends, many of whom live alone, make those blankets I owe people, entertain the mini me and help him stay on track with his reading, writing, spelling and maths and relearn German again.
Any ideas of ways I can keep my self and a 6yo occupied and sane are very welcome!
MORE INFORMATION:
Guidance Overview
Here is an overview of the types of guidance and who they apply to:
For everyone: Stay at home – this includes anyone with sickle cell trait (sickle cell carriers)
For all patients with a sickle cell disorder (e.g. HbSS, HbS Beta thalassaemia, HbSC, HbSD, HbSO): Shielding
Stay at Home
The most recent guidance from the government is that everyone should stay at home except for just a few reasons. In order to keep people safe, the government has implemented three new measures:
Everyone should stay at home, except for very limited purposes (see below)
Non-essential shops and community spaces will be closed
All gatherings of more than two people in public will be stopped.
There are four exceptions to the stay at home guidance:
Shopping for basic necessities (for example food and medicine, which must be as infrequent as possible)
One form of exercise a day (for example a run, walk, or cycle – alone or with members of your household)
Any medical need, or to provide care or to help a vulnerable person
Travelling to and from work, but only where this absolutely cannot be done from home