Isolation Stories: Living Life on the Inside

Isolation stories

Since we first heard that strange new word ‘coronavirus’ all those months ago, many of us have seen our lives changed unimaginably, all within such a short space of time.

Although we have all had to come to terms with our daily routines being turned upside down, shielding or self-isolating have undoubtedly been the most The Highlands Support Group on a Zoom call difficult aspects of these changes, across our community and beyond. For many people, shielding meant having to live without the people who matter most. It has often caused practical difficulties as well, especially around the simple things we have come to rely on, such as shopping and picking up prescriptions. Many people have had crucial appointments put on hold. Then there are all the little things that we seemed to take for granted in our normal lives, including the freedom of just getting out and about. Amazingly, we have found new ways to adapt, to keep busy and to stay in touch during these unprecedented times. We reached out to our community to find out what everyone has been getting up to over the past few months, and we are incredibly grateful to everyone who shared their stories of getting through this truly unbelievable experience.

Sara’s story

“During lockdown, and especially whilst shielding, I’ve been feeling very isolated and missing my trips out for walks in the countryside. So as I couldn’t go to nature, I tried to bring nature to me! I’ve invested in a number of house plants (all with names of course!), which I’m using my time at home to care for. I usually end up killing plants as I’m not particularly green-fingered, but I’ve had a lot more time on my hands recently to research how best to care for them, as well as time just tending to them! I’ve also been out planting as many flowers and shrubs as I can in the garden, as well as tending to the ones already there. This has not only been great for my anxiety; but has also given me a different way to exercise, since I couldn’t leave the house. All in all, it’s been a thoroughly enjoyable way to spend my time in lockdown :)” Sara McAreavey

Georgina’s story

“The thing I love doing most in life is spending time with my family and friends. Any opportunity I get to meet up I’ll be there if I can. So, as lockdown started, I felt really sad at the thought of not being able to see people for a long time. I feel extremely grateful to be isolating with my parents and my brother; but not being able to see my sister who I’m incredibly close to has been hard. Not seeing friends, those who have given birth recently and the little ones I miss so much. Babies and children grow up so fast I feel really gutted to be missing these special times. One thing that has helped this situation a lot has been video calling! Thank you, technology! It has made isolating a lot easier being able to see people on screen at least. My sister and some close friends hold video quiz nights every Friday. I’ve taken this as an opportunity to get dressed up as I would if I was ‘actually going out’ and I find it all helps to keep our spirits up, keeping us in touch and able to check up on each other. It has also been really nice to catch up with friends that are dotted around the country and those who are not in the UK. This is definitely something that I’d love to keep up when isolation is over.” Georgina Pantano

Cara’s story

“I love doing crafts and have taught myself a few new skills while I have been shielding. My systemic sclerosis affects my hands and so these crafts have been really great for helping my hand mobility.” Cara, 17, has systemic sclerosis. For Cara, the coronavirus pandemic has led to cancelled appointments, dried out and very painful hands exacerbated by the extra handwashing and sanitising; and also to shielding which has impacted on her whole family. The biggest disappointment however has been the delay of a possible stem cell transplant which could transform her life. “I understand why but it’s disheartening. Scleroderma has taken away all my prime teen years and it’s hard to find others my age going through it too.” Cara is also the youngest member of our wonderfully active Scleroderma and Raynaud’s support group in the Scottish Highlands. When the country first went into lockdown the group could no longer meet in person and many familiar faces have had to shield, which has been incredibly difficult for everyone. With this in mind, Cara suggested setting up a Zoom call every week, so that the group would not lose touch. This has been a great success; so much so that several new members have even joined the group during lockdown.

Shirley’s story We are extremely grateful to Shirley

Gunning for all of her generous support throughout this summer.

Shirley has recently been diagnosed with Scleroderma. She is a qualified beautician but has now had to stop working as the condition has affected her hands to such an extent that she is no longer able to carry out treatments. During May this year, Shirley partnered with Neal’s Yard Remedies, a company offering a wide range of ethically-sourced health and beauty products that use natural ingredients. She kindly donated all of her profits from website sales to SRUK during Scleroderma Awareness Month in June; and has even decided to continue for the rest of the summer! For more information on the range available from Neal’s Yard Remedies, please visit Shirley’s page at https://uk.nyrorganic.com/shop/shirleygunning/. As ever, always talk to your doctor or dermatologist before making any changes to your skincare routine. 13

Eva Grealish

Eva Grealish has Scleroderma, Raynaud’s and Sjogren’s. She works as a children’s mental health nurse and is currently working from home which can be really challenging in her line of work. In her story, Eva tells us about how COVID-19 has impacted upon all aspects of her life:

“Handwashing and santiser have wrecked my hands completely.

I really struggle at this time of year – my regular infusion has been postponed and that’s had a big impact. My hands were blue yesterday in spite of it being the hottest day of the year. And it’s been hard to get hold of my hydroxychloroquine so I’ve had to reduce my dosage so I don’t run out.”

Eva Grealish

Lauren’s story

“Absolutely in love with my website! I hope you guys love it just as much as me” Lauren Harvey Lauren Harvey, who has systemic sclerosis, launched her new website, www. butterflyblue.uk whilst shielding during the COVID-19 crisis. This is a new blog that is designed to inspire people to raise awareness of Scleroderma, by helping them to understand the different elements of this often-complex condition. Lauren uses her platform to look at the various aspects of living with Scleroderma with honesty, empathy and humour. The site is very welcoming and user-friendly, and you can even become a member! For more information or to join the discussion, please visit

www.butterflyblue.uk

And finally . . . At Scleroderma & Raynaud’s UK our team is still here, even though we have had to find new ways in which to operate, at least for the time being. We are all still working remotely, however our roles have not changed, and neither have our services. The Helpline also remains open every day. Our staff team is still as strong as ever, and we can successfully coordinate with each other by holding our regular meetings online until we can safely return to the office. Here we all are on a recent Zoom call, and we will carry on working in this way for as long as this situation goes on.