A friend used to tell me about an unwelcome relative who visited her at home and gave her more grief than joy. We would chat about her anxiety before their arrival, and she could hardly wait for their departure. I now use this metaphor to describe my autoimmune visitors, unwelcome guests who seem to drop by uninvited and unannounced. These include Raynaud’s phenomenon, ulcerative colitis, allergic rhinitis and the one I dislike the most, purpura, which is my worst nightmare.
As with all autoimmune diseases, having one means it is more common to suffer with others. There are more than 80 different autoimmune diseases, and according to a study carried out in 2014, women get autoimmune diseases at a rate of about 2 to 1 compared to men — 6.4 per cent of women vs 2.7 per cent of men.
In this latest blog, I was going to talk about the effect these visitors have on me, but, as of yesterday, that changed as I have an “update”, so I’ll talk about that instead and then cover only one of my visitors in a bit more detail.
Last week, I spoke about being nervous about starting my new biological drug. My baseline blood tests had gone walkabout, so I had hoped there might be a convenient delay. They have been found, and my new biological drugs are arriving on Wednesday. I will be under the care of HaH (Healthcare at Home), and my first injection will take place on Monday, 23rd March, under the supervision of a nurse.
To say I’m nervous is an understatement, as these drugs will lower my immunity and increase my risk of contracting Coronavirus. After my last episode with Humira, I am also nervous about suffering another allergic reaction. However, I am also grateful for the opportunity to take these drugs, as they can be life-changing. I am excited about living without the challenges I tolerate today.
I appreciate everyone handles worry and stress in different ways. Because I have an overactive mind, I have learnt to manage my worries to reduce my stress in a way that works for me. I have several compartments that I allocate “worries to” – a family compartment, work, health, finances and miscellaneous and each worry gets parked in its appropriate compartment until I can deal with it 😊.
Last year’s “work” compartment was overflowing; we had some bad luck, which affected one of our largest clients, and, whilst it was outside our control, I still don’t like letting people down. Currently, my “health” and “family” compartments are up to maximum capacity as we wait to see the impact of Coronavirus. The stock market has also taken a nosedive, so the finance compartment is full, and the retirement plan is on hold for a while.
When I read the self-isolation criteria about the Coronavirus, it made me realise that people with autoimmune disease live with some of these symptoms every day, such as fatigue, muscle aches and a lack of energy. That, combined with my rhinitis and asthmatic cough, I need to be careful about getting the balance right between self-isolating for the rest of the year and only when I need to 😊.
I mention all this because one of my unwelcome visitors arrives when I am more stressed than usual. Purpura, also called blood spots or skin haemorrhages, refers to purple-coloured spots that generally appear on my arms.
Purpura occurs when small blood vessels burst, causing blood to pool under the skin, and I get these lovely purple patches on my skin that range in size from small dots to large areas that cover my lower arm. I am thought to have it because of my low platelet levels, which can cause bruising and bleeding.
This particularly unwelcome guest mostly arrives in Spring and Summer!! It would come in Autumn and Winter when I covered my arms if it was a more thoughtful visitor. But NOT Purpura, here’s the sun, look who’s come – “Hello Purpura, what a surprise to see you”. I would share a picture, but I don’t have it now as I am still in jumpers. As soon as it warms up, Purpura will turn up, and I will share some pics of this delightful addition to my Spring and Summer wardrobe.
On a more serious note, we live in challenging, unsettling times, and many people will have much bigger dilemmas than mine.
Keep safe, everyone; make wise decisions and don’t buy too much toilet roll as we are down to our last 4 rolls, and I can’t find it anywhere.
Until next time, wish me luck xx.
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