Ms Kim Fligelstone
The initial feeling for me was one of fear, and this seems to have been the reaction of other people with scleroderma.
Each person with scleroderma has their own unique set of circumstances. Indeed just like the general population, but add to that the anxiety of having a very complicated life changing illness that can affect our internal organs, that only a very small proportion of the medical profession understand, let alone family, friends or neighbours. Some of us had appointments and tests booked during lockdown. Hospital treatments and surgery have been cancelled, required regular blood tests for certain medications missed. Some patients are taking medications that were highlighted by the national press/media so they were worried if they should continue with them or concerned that the supply of certain medications would run out.
I think the people affected more than any other group were those without any internet connection, as well as people living on their own. Not just feeling isolated (a feeling well known to us) but facing practicable challenges of how to get food deliveries, medications, or access help of any description. Thank goodness for carers, local councils, and the local community as well as our incredible doctors, nurses and families.
On the plus side, after the initial shock (for me) it was quite a nice feeling to just stop, suddenly the pressures of everyday life subsided, (although I did miss two conferences abroad). I was able to try baking and it was great to watch Netflix and More 4 during the day! The difficulty of living in the City without a garden took a bit of getting used to as we were advised not to set foot outside the front door, when that eased it was a relief to many of us. Of course, stopping was not an option that key workers were able to experience or people whose scleroderma was active or had other illnesses that meant accessing emergency intervention. I do realise I was one of the lucky ones not to have an emergency during this time.
I really hope that we will be able to access all the services that we rely on such as dental, podiatry, physiotherapy, occupational therapy, pulmonary rehabilitation, mental health and other parts of the large team needed to care for scleroderma. I wonder how medical appointments via video or telephone will work out
I don’t think I realised quite how much I took for granted before COVID-19. Now I just want to see my elderly family and my friends and hope it won’t be too much longer before that becomes a possibility. None of know how much longer COVID will be with us. I guess we will have to find a way to live safely with it depending on our own individual circumstances.