Seated at my work, age 28, on a January afternoon; I checked the calendar to see when I would be paid after receiving my salary early before Christmas, but could not make out the numbers. “Here we go again” I said to my husband as I rang the GP. Within 24 hours, I was in hospital being introduced to a new world that I didn’t yet understand, full of long intimidating words for which I didn’t know the meaning.
Although it was the first time that it presented in this way, it was not the first time this had happened. For years prior, I had experienced very odd symptoms in various parts of my body, always treating the symptom in isolation, but no understanding of the origin.
In September 2019, things deteriorated very quickly, to the point where my husband had to physically help me up the stairs due to my leg weakness together with burning skin, swelling, fainting and more. This, what I now know to be a serious flare, impacted not just me but my husband, my work, and my family. My nieces, who were very young at the time, noticed my illness in their own way and through their innocence would ask “Why are you always too tired to play?”. The resounding guilt this left me with was all consuming.
A lot of research later, I met my wonderful Rheumatologist who would eventually diagnose me with Behçet’s Syndrome and connect those years of previously unconnected symptoms. I was told about my new medication and how, if it worked, could stabilise the condition – “I like that word – Stable.”
Over the next few months, the symptoms started to improve, but the medication’s side effects were to severe to continue. So I was changed to a different type of treatment, TNF Blocker injections.
After a few weeks my Consultant told me those magic words, “Your Vasculitis is in remission.” Driving home that evening in the car with my ever-supporting husband, we talked about our future with such excitement and hope. It can be likened to somebody pressing play on a TV show that was paused since the days of VCR tapes. The next few months consisted of blissful talks about family planning, holidays, long walks on the beach with our fur babies, sea swimming and countless DIY and home renovation projects.
Unfortunately, 8 months later I was in a full flare again. I did not lose hope, as I was advised that getting the dosage of the new medication right to sustain remission was not an exact science, so the dose was doubled. But the more serious symptoms would not budge.
This is where I currently am on my journey, about to embark on another treatment plan with family planning on hold but striving towards remission. Despite the challenges, the unwavering support of my husband, in-laws, and family keeps me fighting, for myself and for the family we dream of creating.
