Maxine dreads the cold weather which triggers her Raynaud’s and she cannot afford to have the heating turned on all the time due to the high cost of living.
I live with my adult daughter who is my unpaid carer and I am terrified at the thought of her moving out and having to get a stranger to take over, even down to making up my medications and helping me bath or shower.
After seeking medical advice in 2018 following my diagnosis of osteoarthritis, I was referred to a rheumatologist in 2020 who suspected there was something more. Due to having puffy fingers, telangiectasia, avascular necrosis and calcinosis on my wrists; he told me I was also showing signs of Raynaud’s.
I had previously undergone an operation on my right shoulder due to large calcium deposits tearing tendons. I was then referred to a scleroderma specialist for tests in 2022 which showed a lung nodule, mitral and aortic regurgitation, osteopenia and abnormal gastric results. I was also experiencing dry eyes, a dry mouth and dental issues where the bones in my gums receded so much that it caused loose teeth and gum disease.
This condition has significantly impacted my life. From once being an avid walker, doing regular exercise and being totally independent; I am now unable to work and need a carer. The psychological effect has been horrendous with days of constant pain and total exhaustion which seem to invade my entire body.
There are so many things I cannot do any more and some days it is a huge challenge when the pain is so intense. I dread the cold weather which escalates my Raynaud’s and it is impossible to afford to sit with the heating on for a long time, due to the high cost of living. Last winter I would have up to four layers of clothing, special gloves and would still sit shivering.
I would urge others to ensure that they get the care they need and get all the correct tests for the symptoms they have. Ask the rheumatology nurses for as much information as possible, as they are vital in helping you manage your symptoms. I have spoken to people in the NHS who have never heard of this disease before. We need earlier diagnosis instead of having to wait months and even years and we need others to understand how this illness impacts our lives.