First and foremost, sorry for the radio silence. 2018 has been incredibly challenging so far but as I sit looking out at the beautiful sunny day here in St Peter Port, I’m hopeful that we are through the worst. Hugo is sat next to me fascinated by his toes and a squeaking donkey football which reminds me how lucky I am.
In short, I’ve been diagnosed with Rheumatoid Arthritis, which is an autoimmune disease affecting the fluid in the joints. It’s not the same as osteoarthritis and there isn’t a cure. The things in my favour are that it was caught early, I’m sero-negative and my inflammation is low grade. The things slightly less in my favour are that I’m young to have this diagnosis, the average age is early 50s (which is when my Mum was diagnosed) and so there’s more to consider as an impact, especially in terms of if another pregnancy would be possible in the future.
In some ways it’s a relief to have a diagnosis, especially as PoTS is often a symptom of something else, but it’s also a lot to adjust to, especially as the medications I take have side effects.
I’m trying to be positive and I’m really grateful to Xav who has been incredible, he did every night shift for 7 weeks as I became ill, and became Hugo’s primary carer when I was too ill to look after him (the RA has affected my hands so I couldn’t hold him), all whilst having no family or friends here in Guernsey to help. Our family have also been really supportive, especially my Mum who is such a positive inspiration of how to make the most of life despite RA.
I’m now adjusting to my new life, and at times it’s frustrating because I feel well and make lots of plans, then wake up with sausage hands and have to cancel them all again! Hugo has also had to be put into full-time nursery. It’s broken my heart to be apart from him so much but Hugo loves nursery and it’s helped his development loads; he can now sit unaided, grab the tiniest and most dangerous things, and is desperately trying to crawl!
One area of exasperation is the silly things people say. I know it’s often well meant, but suggesting someone with an autoimmune disease ‘just’ chills out and they’ll feel better isn’t helpful! Similarly, proclamations about not being able to bear the idea of leaving your baby is insensitive, especially as many of my Mum friends are going back to work this month and are finding it tough enough. However, for every frustrating comment I’ve had far more lovely, kind ones; from my friends offering to take Hugo despite wrangling their own baby to friends texting me or my family to see how I am and offering useful information. I want you all to know how much it is appreciated.
Although snow is forecast in the Channel Islands (and the islands will ground to a halt) it really feels like Spring is on its way and there are lots of things to be positive for.
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