Most people don’t realise I have something wrong with me. To look at me I seem well enough, most of the time. At times I can seem well and think that I am a bit ol’ fraud and there is nothing wrong with me!
However I have Lupus. Or to give it it’s full title – Systemic Lupus Erythematosus. I don’t generally talk about it that much, when I have done the first thing I often hear is, “I’ve heard of it, but don’t know what it is”. The second thing is “isn’t that the one that House always thinks is wrong with his patients?”.
After the recent revelation by Selena Gomez that she has Lupus (I hate the phrase ‘suffering from’), it seems to be headline news. I think this is a great thing – the more we get sharing, the more our friends and family can understand and perhaps empathise with us. Lupus is a strange and reasonably rare condition, which is little-understood and has no cure. There isn’t even really a test to categorically state that you do or don’t have it.
As a result of the recent publicity, I have recently discovered the Spoon Theory which can help to explain how deeply we have to consider simple decisions and how these may affect us. Those of us living with a long-term condition have to think deeply in order to keep ourselves as well as possible.
I thought I would share my Lupus journey and perhaps add to the increasing understanding around this strange, serious and potentially life-threatening condition.
Rewinding back 11 years ago, I was in a difficult relationship with someone who had his own issues and worries, but who had little time or thought for mine. Like so many intelligent, independent women, I got sucked into years of unhappiness. I was living in Hove, near Brighton, near my home town and my family.
Being a redhead with pale skin, I have never tolerated, nor sought out the sunshine. My then-partner and I had a blazing row and I was feeling suffocated and needed to get out for a while. I took a book and went to sit by the seaside, focusing on the waves moving majestically to and fro, people-watching and generally trying to relax. I didn’t give any thought to the fact that it was spring and the sun was almost at full glare.
Of course, I got sunburnt. Not badly, but enough to be uncomfortable. I decided to go home, still feeling stressed at what I would encounter when I arrived back at the flat. He was trying to be conciliatory, but by now I was feeling rather run down and just went to bed.
That week I had what I thought was flu, took some time off work with aches, pains, headaches, feeling absolutely shattered and, as I always do, went back to work as soon as possible the next week. I had a lovely job at a charity, and was sitting in a meeting the next week with a partner company, with a beautiful spread of lunch out in front of us. The most glorious mix of fresh fruits and yet, there was something wrong.
It took me some time to process that the beautiful spread of food in front of me was spinning across the table, like a strange combination of a kaleidoscope and a Catherine Wheel firework. This hallucination was the strangest feeling, and I knew right then that I needed to get checked out. My boss kindly drove me home immediately.
Thankfully I managed to get a GP appointment quickly, but could only see a Locum. By this point I had a strange rash spreading up and down my body from my torso. I looked like a red and white Dalmatian! I advised the GP of my symptoms and he told me that I had flu and should get some rest etc.
After a couple of days of not feeling any better, I found out that my GP was back from holiday. I rushed in to see her and am relieved to say that she very quickly sent me for some very specialist blood tests. I can only think that she suspected Lupus or something similar immediately from my symptoms.
My middle finger had also swollen up with a red mark tracking up my hand to my wrist. My shoulder was in a complete spasm of pain and I could not move it. I knew my then-partner would not be sympathetic, so I drove 13 miles to the care of my Mum and Dad in second gear as I couldn’t move my shoulder.
I quickly was referred to a Rheumatologist and got a diagnosis within three months. As with many others with Lupus, I may have lived with it for some time before diagnosis, but I consider myself very lucky. My feeling was that although I had some tiredness before diagnosis (doesn’t everyone!?), the typical Lupus triggers of sunlight and stress meant that I was diagnosed at what I believe was a very early stage.
Over ten years later, I am able to carry out a full-time job and have some time and energy to spare for my hobbies and friends and family. So how does Lupus affect me otherwise now?
I am photo-sensitive, which means that I wear Sun Factor 50 all year around and cannot sit in the sun. If I do so, I pay with headaches and higher levels of exhaustion, usually within hours. I have to be careful where I go on holiday – even in the UK I was sunburnt in a very cloudy February day, so I have learnt my lesson well on that one! I am lucky not to have problems with mouth ulcers and hair loss, but I live with some arthritic pains and a level of exhaustion which I always joke would fell an ox!
I have to give up on doing too much – some things I have enjoyed and loved have had to fall by the wayside as I no longer have the energy to devote to them. Sometimes, it is the things I need to do, that I no longer have the energy for – going back to the Spoon Theory I think this explains it very well.
Many times (including from my nearest and dearest) I have realised that although sympathy is available readily, as a very positive person I do not need this. What I crave is empathy. But empathy is a very distinctive thing (as a Nurse, it took me a long time to really fathom the difference.)
Can you really say that you are able to put yourself in my shoes for a moment? How can you really understand what it is like to be going through something that you have no knowledge of? My usual way of explaining my exhaustion (to hear from others – “oh yes, I’m really tired too” is a particular kick-in-the-teeth), is to ask them if they have ever had full-blown flu. The type of flu where if you were to drop something on the floor and need to pick it up, you couldn’t. You wouldn’t even consider attempting it as it would be futile.
Imagine living with this and having to make these sort of decisions every day. To some extent my symptoms are controlled by medication, but when my reserves dip and I have little left to give, this is how I feel. At the moment I am going through a bit of a dip and have had to curtail some things which I was really looking forward to. Now my job is to gain some reserves and get back on course!
As a final word, there are many people living with long-term or acute conditions who are in a much more difficult place than I am. Positivity has been found to have benefits in many conditions and I’m sure this is the case with Lupus.