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Living With Fibromyalgia in Lockdown

By Dolly Carter


A cut out photo of Sasha in a red dress against a yellow background with funky purple splodges.

“When your lifestyle is your medicine, changes to it can have a big impact on your quality of life.”

Three years ago, at the onset of her chronic health issues, Sasha Donovan-Anns had lost a quarter of her body weight; this sudden weight loss made her very weak, having a negative impact upon her attendance at college, as she was barely leaving the house. After retaking her final year, Sasha now studies English Literature and Creative Writing at the University of East Anglia. Her experience of a similar situation has given her the techniques to deal with lockdown, like being able to slow down and appreciate the little things in life. She comments that “life is like a spiral”, in that we are brought back to certain issues and experiences and are then enabled to explore and understand them on a deeper level.


Sasha has Fibromyalgia, a medical condition characterised by chronic widespread pain. She says that having Fibromyalgia “can mean waking up feeling like you spent the night running repeatedly into a brick wall.” Typically, it can present alongside Irritable Bowel Syndrome (IBS) and Chronic Fatigue Syndrome (CFS). Pain extends from the nervous system, which makes her feel as if she is “living with an all over ache”; using pain relief is a last resort for Sasha, as standard painkillers simply do not work, meaning that she must use medication that can be highly addictive or has unwanted side effects. The coronavirus pandemic has contributed to her previously existing experiences of feeling isolated and having health anxiety, with the added stress often intensifying and producing unpredictable symptoms of her chronic illness.


The constant message of daily exercise has proven tricky for Sasha, as for those with her condition it is important to be able to maintain a consistent level of exercise without crashing or burning out. After recovering from the initial onset of her illnesses, she gradually started to take up dancing again, an activity she has loved since the age of 3. She carefully structures her week to include both exercise days, such as a Zoom ballet class or an outdoor walk, and rest days, where she may be having an IBS flare and avoids being on her feet if possible. The closure of restaurants and public toilets poses problems in terms of accessibility, as having access to the facilities “makes a massive difference to whether [she is] happy to leave the house.”


Sasha has also observed a marked decrease in the resources and support that she receives through the public healthcare system. She describes her first telephone physiotherapy appointment as “far from ideal”, as the sessions are designed to be conducted visually. This has opened her eyes to other accessibility issues occurring outside of the pandemic, in normal life; for example, the experiences of a visually impaired person going through physio. After her session, Sasha was told to expect a follow-up telephone call any time in the next two weeks. Unfortunately, the call arrived when she was without signal; she hasn’t been contacted since and has had to get in touch with her GP to ensure that she isn’t struck off the list. She also mentions how safe touch and community involvement have played a part in her post trauma therapy. Both group classes and massage therapy are impossible under the current social distancing measures and she misses intimate moments, like curling up to fall asleep with her partner, emphasising that “it’s those moments of connection and unspoken intimacy that are so important to have in our daily lives.”


Moving forward from the pandemic, Sasha hopes that accessibility is normalised, highlighting that she has spent almost a year on her current course at university without a lecture capture service. The Disability Office had been campaigning for this to be introduced across the university and, with the help of the Student Union’s Undergraduate Education Officer Callum Perry, it was finally approved in March. This will particularly help Sasha, as she can replay lectures at times when her flares of pain and fatigue are not so acute.


Sasha explains that her chronic illness has actually given her a head start in coming to terms with the current situation; she has even managed to help her friends to cope. She says that it is easy for an able bodied person to assume that a disabled person is automatically less able to do things, when, in fact, she has “developed her own skill sets to deal with [her] complex experiences”.


For more information on Fibromyalgia, Sasha recommends watching the BBC Stories video on the condition, or following The Mighty on Facebook, a safe, supportive community for people facing health challenges and for the people who care for them.


Dolly Carter

dollyflorencemaycarter@gmail.com



Bio: Dolly is a first year English Literature with Creative Writing student at the University of East Anglia, aspiring to pursue a career in journalism. Currently, she is working on a project which takes a micro level approach to reporting, by voicing personal experiences of the pandemic and relating them to wider contexts. She hopes that this will give people a break from the constant onslaught of daily news and provide them with fresh, relatable perspectives.

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