Throughout my life I’ve always preferred heat over the cold. When I describe myself as a cold person, I’m speaking of my temperature gauge, not my personality (hopefully)! As pretty as the Northern lights appear to be, I’ve never understood the draw to the freezing temperatures of Iceland, pre-diagnosis, you could only catch me on the beach or by a radiator. I would always joke that I had circulation issues when people would ask why I’d constantly complain that I was cold, but I had no clue that it was actually true.

My introduction to Raynaud’s disease was reading through the letter from my rheumatologist after my second rheumatology appointment. Along with a list of other unexplained terms, under “diagnosis” it read Raynaud’s. Of course, I googled it and wasn’t surprised when I recognised symptoms of numbness in toes and fingers, pins and needles, experiencing a prickly and or tingly feeling, fingers and toes changing colour to blue or red (the skin at the tips of fingers may go paler in darker skin tones). It explained why my body reacted to temperature changes and my apparent inability to be in any cold environment without experiencing deep pain “the cold is in my blood”. My feet are my main problem area, so much in the summer I’ll don my sandals outside for fashions sake – but when I get inside the socks go on. I’m ashamed to say that I drive the people in my house crazy by moaning that even looking at their bare feet makes mine feel cold, I guess freezing feet need company!

For years before diagnosis, while doing shift work for the MPS, I would struggle with staying warm and at night sometimes it was excruciating. The building was a converted car park which had windows that couldn’t be opened. As a result, the air con was always on, and the vents had to pump out cold air to keep all the computers working. I would wear my work shirt and jumper and thin tights in the middle of summer and in the winter wear a t-shirt underneath my work shirt, followed by the uniform jumper and then the uniform fleece on top. I would also wear thick tights or leggings underneath my trousers and wore knee-high boots which were a size too big for me so that I could wear cosy socks with them. I would sit at the desk wrapped up in a blanket with my hot water bottle. People would assume it was a comfort thing, which to some extent it was, but it was mostly because without it all my body would feel like it had been plunged into an ice bath. I couldn’t afford to be numb with cold because I had to use the foot pedal and keyboard to speak and type simultaneously – emergencies don’t wait for your hands or feet to warm up.

There are two types of Raynaud’s; primary – when the disease occurs on its own and secondary -when the condition is linked to a rare disease such as a lupus, rheumatoid arthritis, scleroderma. The easiest way to explain it, is that at times small arteries that supply blood to the skin and extremities narrow and restrict blood flow to these area’s supposedly to keep the bodies internal organs warm and working – hence “warm heart”. It does this in response to cold or to stress basically protecting your insides. While this seems like a sensible thing and kind of genius, too much of a good thing can be bad and long periods of restricted blood flow to the areas can cause pain, ulcers and death of the tissue. Other triggers of Raynaud’s are said to be: – smoking, certain medications for high blood pressure, migraines, anti-depressants, ADHD and cancer, also repetitive work such as typing, playing the piano and construction especially using tools that vibrate.

So doing the math – a stressful working environment plus exposure to cold temperatures multiplied by constantly typing and tapping my feet for 12hrs a day for over 13 years equaling a Raynaud’s diagnosis seems about right. At my most recent job I was able to sit in a room by myself, with an electric heater by my feet (which must have cost them a fortune), but I’m not so sure if other jobs would be so accommodating. Gloves are necessary no matter the weather, nowadays you can get really great touch screen ones, however at work I generally wore full (or tip less) copper compression gloves which are made for people with arthritis, they encouraged circulation as well as kept my hands warm.

Having lupus (the gift that keeps on giving) means that I have secondary Raynaud’s and while people with primary Raynaud’s may experience symptoms for usually up to 10 minutes my symptoms can last a lot longer. People with lupus struggle with regulating their body temperature, and if you’re photosensitive you also have to keep away from the sun and therefore heat. In the winter you’re encouraged by professionals to stay indoors and not to brave cold temperatures, but outdoors is where the fun is – especially over the Christmas and New Year period. It’s extremely important for us “coldies” to wear warm clothing and cocoon up!

February is Raynaud’s Awareness month in the UK, and we recognise Rare Disease Day on the 29th of February, not to mention that it’s LOVE month too! While I look forward to warmer weather, the winter months have been an excuse to get cosy, borrow body heat by snuggling on the sofa, cosying up with loved ones and giving plenty of hugs. It’s the ideal excuse for showing love and physical affection, so I may be frosty on the outside it’s what’s on the inside that counts.