Here is Bryony’s story on full time caring whilst managing her own health and the impact that Coronavirus had on her family. All names have been changed.
I look after my son aged 16, and daughter aged 21, who have inherited Chronic Lyme Disease, ME Chronic Fatigue Syndrome and Ehlers Danlos Syndrome. Whilst we share the conditions by name, it is like there is a different camera lens on each of us as we each live with these conditions so differently. It’s funny how many symptoms that I thought were normal; the aches and pains, the tiredness, the sleeping for hours. It wasn’t until my children were diagnosed, did I even consider that I may have chronic fatigue myself. It happens like that - we have naturally gone on this journey together.
Over the last nine years, our family has developed our own ‘normal’ and the routine that goes along with that. My husband works full time as a consultant and I am the main Carer for our two children, alongside our team of Home Help. Animals play a big part in our family’s lives too. We have two dogs, 'Little' and 'Large' and our walks are an important part of the routine.
My son and I also enjoy our Equine therapy which we usually attend together regularly. My daughter, who is bed-bound enjoys her bond with our guinea pigs who are great companions. We are a close-knit group and we enjoy our time together, watching programmes and holding weekly take-away nights.
Caring for us is like spinning plates, trying to manage each condition for each person. As part of managing these conditions we have explored homeopathic remedies and strategies which have taught me what has worked for me and my children, albeit the hard way. For me, it has been such an achievement to improve my own health during this caring journey and as a family we have developed ways to be as well as can be.
The indirect impact of Coronavirus on our family has been huge. For example, our day to day routine has had to be adapted; with the removal of Home Help, I have gone from managing helpers, to managing my husband! This has taught me to find patience – that jobs will take longer, that they may be done differently and that the timings of things are certainly more relaxed. It has also brought a big financial worry for us due to the reduction in work, as he still carries the weight of the household finances on his shoulders. The increase in caring role has meant that job searching has had to be put on hold.
It has also had a huge impact on my son’s life, who was regularly visited by tutors and who had been working towards new activities outside of the house including a board games group. The restrictions have removed his physical network and with no online peer network, this has lowered his overall mood. My son is incredibly resilient, and he had been setting himself goals including time out of the house, building a network and equine therapy as part of his journey to improving his mental and physical wellbeing and the lockdown measures have been a setback for him.
Although my daughter’s life was relatively unchanged, the Coronavirus caused her a great deal of worry due to her vulnerability to infection, particularly when we still had Home Help coming in to support. These concerns were alleviated when my husband and I decided who could come in to help and what was safest which meant that we started doing most of the care ourselves.
I have found that my time to manage my own health has changed too. I am not attending my acupuncture or reflexology sessions but I am relying more on my Emotional Freedom Therapy from videos on social media and online mindfulness courses to maintain my mental wellbeing.
When Mobilise asked what my advice to other carers would be, I said that it would be to stay connected and supported. These can be through simply joining a community network of unpaid carers or on Zoom in Virtual Cuppas.
Huge thank you to Bryony for sharing her story with us. If you have found this story useful and would like to help others by sharing your story, please send Suzanne an email.