Comments on: Chronic Illness And Self-Worth In A Global Pandemic

By: Pippa

Pippa — Fri, 19 Jun 2020 12:50:45 +0000

In reply to Dorothy M. Chambers. Thank you so much for sharing Dorothy, and thank you for all you're doing! It's so important to be having conversations about these issues and facilitating change. I hope today is as kind as possible to you xx

By: Dorothy M. Chambers

Dorothy M. Chambers — Tue, 16 Jun 2020 12:42:47 +0000

Hullo Pippa
Just discovered you and this post which put into words quite a lot of what I’ve been feeling, but not really identifying. I have long term M.E. and am 71, so am blessed by not having to earn a living any longer, but have a basic pension due to the illness. I recently became involved with a local issue whereby an environmental group were campaigning to persuade shops to close their doors in Winter to conserve energy. I I wrote to the local paper stressing that I applauded the intention but pointing out that this move created difficulties for scooter/wheelchair users, suggested door bells to ask for help when needed, and expressed the concern that big shops with automatic doors would benefit unfairly. I was contacted by the paper to enlarge, and they published the result. The environment group responded by suggesting door bells (!), and insisting that parents with push chairs were managing perfectly well. I decided to shut up at this point. Now of course our small shops have to struggle with the new regulations and I’m thinking of writing another letter asking how they will cope with closing their doors, installing bells and cleaning them (none have bothered), dealing with wheelchair users queueing in the rain to gain access etc. I wonder what aggressive reactions this might prompt, but think I might have a go and find out.
Keep it up,
Dorothy

By: Pippa

Pippa — Sun, 10 May 2020 19:41:43 +0000

In reply to Terry. Thank you so much for sharing Terry, and for the kind words. Never apologise for letting it out, heaven knows we all need to every now and then! I really hope easier days are on their way. Hang in there xx

By: Terry

Terry — Sat, 09 May 2020 17:03:35 +0000

You’re amazing & inspiring Pippa. I’ve been ill with something undiagnosed on top of my usual CFS since January and actually feeling guilty that I’m not yet recovered. After all, folks with covid often recover in a few weeks! This situation really brings back twenty years of misdiagnosis, being told it’s all in my head, until a tick bite made me realize antibiotics removed most of my symptoms. Of course those twenty years of chronic infection ruined my immune system and ten years later I can’t get off the antibiotics and will probably someday die because of antibiotic resistance.

Sorry, that is the kind of whine I don’t usually allow myself. You’re right on. The current worldwide crisis has brought back, in full force, memories of me sitting with FOUR doctors standing over me, aggressively telling me to go to psychiatry. Not even compassionately but aggressively. Two years later I got bit by a tick and that finally proved I wasn’t nuts.

Of course I feel for the multitude out there, sick and dying. But like you this has highlighted what I’ve had to adapt to. It feels huge and in my face today.

I’m having an emoting day today—-have to let it out once in a while. But tomorrow I’ll get back to plugging on through. Thank you for your sharing, and the bit of inspiration you leave me with in knowing that someone else has to periodically ride the fence of both peace & acceptance along with feeling the results of our very real illness.

By: Pippa

Pippa — Mon, 13 Apr 2020 11:28:53 +0000

In reply to Terry Mayfield. Thank you Terry! Xx

By: Khushi

Khushi — Sun, 12 Apr 2020 09:08:22 +0000

hey Pippa, I know I’ve been quite late in reading this but I loved this post! I’m with you. school work and academic assignments stop me from doing what I want to. and I specially love this para.
“The thing that’s getting to me, however, is that it took a global pandemic for the UK to accommodate the very adaptations disabled people have spent years of their lives fighting for.”
not only UK, India and other countries of the world too.
I’m amazed how teachers are sending worksheets and other assignments without me having to remind them, now that other students need it too.
I’m not chronically ill. however, I’m VI and relate to it so, so much.
keep well, stay safe, you are amazing.. all my love and best wishes from India are with you always!

love youuu xxxx

thanks for this post 🙂

By: Terry Mayfield

Terry Mayfield — Sat, 11 Apr 2020 07:45:40 +0000

In reply to Lisa James.

Wonderful post, Pippa! Thank you for sharing your lovely and spot on insights.
Warm wishes,
—Terry xo

By: Rachael Emma Tomlinson

Rachael Emma Tomlinson — Fri, 10 Apr 2020 19:42:43 +0000

Fabulous Pippa and you have voiced all my concerns I will never use Morrisons again for one I have had a regular order every four weeks for a long time and I can’t get a slot, they really should be looking after their regular customers too xx

By: Cassie Creley

Cassie Creley — Thu, 09 Apr 2020 19:37:39 +0000

Really enjoyed your insights Pippa, especially how seeing people launch all these new projects can affect us. I was getting quite discouraged by people asking how I’m keeping busy. After some time to think, I realized I needed to once again explain my limitations. I don’t suddenly have energy or health to do more than the usual, and I don’t need to put that pressure on myself. I needed to remind myself that productivity isn’t where my worth comes from!
Agreed, while it’s wonderful that so many resources are available, it’s frustrating how it wasn’t a priority until now. I’m also remaining hopeful these changes will stay in place.
Keep sparkling Pippa!

By: Lisa Stone

Lisa Stone — Mon, 06 Apr 2020 21:29:51 +0000

Fabulous article, Pippa! It’s so true that, almost overnight, people are willing to make sweeping changes – because they have to… and yet those same changes have been deemed impossible until now.
It’s also deeply frustrating to hear people moaning about a few weeks isolating – mostly with their families – when people with chronic illnesses are so often alone and are given no scope to moan.
Let’s hope that, like WWI was a game-changer for the campaigners for women’s rights, people remember and show a little more sympathy and flexibility when this is all over.