Thank you to Jess for a very thought provoking discussion, focussed on “Coming Out of Lockdown” at our recent Post-Diagnostic Support Group meeting.Thank you also to all those who attended, and for those who were unable to make it, you can watch the presentation below. We look forward to seeing you at our next Post-Diagnostic Support Group meeting on 25th August.
Dream
Guest IT Consultant
Guest IT Consultant
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What a brilliant meeting! Thank you so much to Jess. I was really sorry to miss this at the time but I had a 6 week post operative hospital appointment.
I could have really joined in with the conversation re masks, having to attend all appointments on my own – no visitors during a 3 night stay. I actually did inform the consultant and nurses of my Aspergers – one nurse actually said she’d never heard of it and one asked me to spell it. Anyway, I have survived but it was an awful lot to deal with.
Thank you to Dream, as always and to Kieran.
Kindest regards
I haven’t watched the video but just wanted to say that for me and many others, we’re still in lockdown. I’ve shielded (not gone out, isolated)since January 2020 due to health concerns and will be doing so for the forseeable future. I have blood cancer (Non Hodgkin’s Lymphoma) and that means that I may have no immunity even after my two covid vaccinations. I’m also on chemo, which under normal circumstances would mean I needed to shield anyway.
I’ve been agoraphobic for most of my life but as with other phobias, if you avoid them, they just get worse…..which is what has happened. (My general mental health is terrible but the support is worse.) Anyway, as I’ve been having to attend hospital so much, I decided I needed to tell my haematologist and all other staff about my being autistic, terribly anxious and very uncomfortable just telling them. Their response has been wonderfully supportive. I’ve already had a psych assessment and been put in touch with a local adult autistic group (not yet contacted)…..all organised by my specialist nurse. Everyone’s trying their best to accommodate me and meet my needs and just be nice.
It’s still a horrible ordeal (not the chemo….that’s the necessary and logically best thing for me) but just dealing with so many people, the noisy, bright and generally sensory overwhelming environment.
Being CEV, I have an ffp3 mask, lanyards with warnings to keep 2m away and to inform of my being autistic and
having lymphoma. However,I don’t trust people!
I’m “lucky” to have two friends with exactly the same form of lymphoma with whom to get through and my immediate family are very supportive but I’ve only had very limited and socially distanced contact with my daughter and family. I have no desire to go to shops or on holiday but I look forward to the day I can hug and be hugged again.
Congratulations to anyone who got through to the end!
Thank you Helen and Nina for sharing your experiences
It is much appreciated