A friend of mine used to tell me about an unwelcome visitor to her home who gave her more grief than joy. We would chat about her anxiety in the lead up to their arrival and she could hardly wait for their departure. I now use this as a metaphor for describing my autoimmune visitors, my 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 percent of women vs. 2.7 percent 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. Alas, 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. I am also nervous about suffering another allergic reaction after my last episode with Humira. However, I am also grateful for the opportunity to take these drugs as they can be life changing and I am really excited about the prospect of 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 a number of 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 of 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 pretty full, and the retirement plan is on hold for a while.
With regard to Coronavirus, when I read the self-isolation criteria, it makes 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 😊.
The reason I mention all this is because one of my unwelcome visitors arrives when I am more stressed than usual. Purpura which is also called blood spots or skin hemorrhages, refers to purple-coloured spots which 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. It is thought that I get it because of my low platelet levels which can also cause bruising and bleeding.
This particularly unwelcome guest mostly arrives in Spring and Summer!! If it was a more thoughtful visitor, it would arrive in Autumn and Winter when I cover my arms. But NOT Purpura, here’s the sun, look who’s arrived – “hello Purpura, what a surprise to see you”. I would share a picture, but of course, I don’t have it at the moment as I am sill 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 are living in challenging, unsettling times and a lot of people will have much bigger dilemma’s that 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
Living-with-autoimmune 