Life Living With Lupus

What would you do if you woke up sick one day and knew that you were never going to get better? That’s the question I found myself asking when I was diagnosed with Lupus. Of course, it didn’t really happen overnight, it was a long drawn out process and now that I know the symptoms I can trace the disease back to my teens. However, the day of my official diagnosis felt like a switch had been flicked. Even although it had been mentioned as first a possibility and then a likelihood, until I was actually holding that piece of paper with 3 letters scrawled in the corner – S.L.E. – there was always hope that it was just a virus or something. Once it was in writing there was no going back and I had to come to terms with the fact that I have a lifelong chronic illness which has no cure.

I’m writing this blog, which is quite far removed from my usual content not because I am looking for sympathy, but because when I got that diagnosis I completely shut down. I stopped blogging, stopped making videos, stopped hanging out in Facebook groups. It wasn’t even just online either. I stopped talking to my friends and family too. Ever since then I have wanted to explain my absence and maybe even do some small part to raise a little awareness of Lupus. My family and I had no knowledge of it until I was diagnosed. It’s still something of a medical mystery and nobody really knows what causes it, so it is understandable that people just kind of look confused when I tell them why I wasn’t able to do the things I used to be able to do. I’ve written this blog multiple times and recorded videos too, but it is never quite right. This time I am not going to dwell on making it perfect. I’m just going to say what’s in my heart and hope it makes sense! So here goes….

In March 2017, I was told that I had ‘general connective tissue disease’ but that it was 90% likely to actually be Lupus, I just wasn’t sick enough to get officially diagnosed. However, just 2 months later I started an extreme flare that lasted around 4 months and resulted in me being hospitalized multiple times, losing the use of my hands for 8 weeks and getting an official diagnosis. Since then life has changed. A lot! I’ve had time now to grieve for the life I used to have and start coming to terms with my new ‘normal’.

What is Lupus?

Lupus is an auto-immune disorder that causes inflammation in the body. There are multiple different types of lupus. The one I have is Systemic Lupus Erythematosus (SLE) which affects my entire system. There is no cure. The best way to describe lupus is that it is like being allergic to your own body. My immune system is broken and can no longer tell the difference between healthy cells and viruses. At any given moment my immune system could launch an attack on one of my organs, my skin or my central nervous system. For me, the biggest areas affected are my skin, hands, lungs, heart, and joints. The symptoms of Lupus are many and long ranging. It’s known as ‘the great pretender’ because it mimics other diseases making it incredibly hard to diagnose. 

Some of my symptoms include extreme fatigue, joint pain, inflammation, depression, headaches, mouth ulcers, Sjogren’s Syndrome, photosensitivity, rashes (malar and discoid) Raynaud’s Phenomenon, hair loss, insomnia, Pericarditis, Pleurisy and general aches & pains.

I am classed as a ‘moderate’ Lupus patient because my symptoms do affect me, but I do not yet have any organ involvement. Many lupus patients develop heart, kidney or liver failure. Around the same time I was diagnosed, Selina Gomez revealed that she had undergone a kidney transplant due to Lupus – that terrified my family!


Living With Lupus

So that covers what lupus is, how about what living with lupus is actually like? I’m not gonna lie – it sucks! First of all, there are the hospital and doctor visits. I should have my own VIP parking spot. I see a rheumatologist every 8 weeks, a respiratory consultant every 12 to 16 weeks, a cardiologist every 6 months and have blood tests every 2 weeks! In between, I also have various x-rays, scans, ecgs and meetings with my lupus nurse. Good thing I’m a planner girl, right? Then there is the medication! It’s a wonder I don’t rattle when I walk! Painkillers, supplements, antimalarials, immunosuppressants, steroids, and anti-inflammatories are all required to get me through the day. I inject myself with a shot of chemotherapy every Sunday morning which has made my hair start to fall out – I’m now sporting a much shorter style, with a clever fringe to hide the bald spots! The steroids have puffed up my face and made me gain weight – but at least my hands work again! The antimalarials, immunosuppressants, and chemotherapy have suppressed my immune system so it is not attacking itself as much, but that also means I get sick easily as I can’t fight off the germs. Being in a crowd is a sure fire way to get a cold if I don’t wear a mask – and I don’t want to wear a mask!

That’s just living with the treatment! I haven’t even gone into actually living with the condition itself! There are so many elements to it that I could probably write ten blogs – maybe I will in future. However, this is getting kinda long and I’m sure you are all bored by now, so instead I’ll talk about two of my major challenges and also direct you to the Spoon Theory. Christine Miserandino is the woman behind and a fellow Lupus Warrior. She wrote the spoon theory to explain lupus to a friend and it has now been adopted by many chronic illness sufferers. It explains life with lupus better than I ever could! It is well worth a read!

The two huge areas that I am struggling with are chronic fatigue and photosensitivity. The chronic fatigue is ridiculous. The simple act of getting dressed often requires a nap. My house is falling apart around my ears because as much as my husband and son try – I cannot keep on top of the housework. Walking up a flight of stairs makes my heart feel like it is going to explode out of my chest! I can never make plans because I just don’t know when I will feel okay enough to keep them! I am having to learn how to pace myself and how to say no! The photosensitivity is also a huge issue. I love the outdoors. However, I now have to wear factor 50, long sleeves, sunglasses and a hat – even in winter! The sunlight causes my skin to get inflamed and my eyes simultaneously dry out and get runny/sticky! If you pass my house and the blinds are still closed I am not lazy – I just can’t bear to have them open.

So, in many more words than I had initially intended – this is why I went awol over summer, autumn and most of the winter! It was more than just physically inability to be present, but a mental one too. Diagnosis hit me harder than I ever imagined it would. However, I am coming to terms with it. The treatment is more stable and I have a few more good days than bad. Lupus is not life-shortening these days, just life-limiting – but life goes on!


3 thoughts on “Life Living With Lupus

  1. Thank you for this post Alyson, I didn’t really know anything about Lupus before reading and it sounds just awful. There are so many symptoms you’ve described that are so familiar to me it might be worth me mentioning to my doctor as I am still largely undiagnosed and they can’t understand why I’m ill.

    It was lovely to meet you at PPC and I wish I’d had more time to chat. You’re a very brave and strong lady x

    • Thanks Emma it’s no picnic but I am blessed with some awesome family and friends and a great doctor so i will get there eventually x

    • The rest of the comment showed up … It might be worth a mention.. ask for a ANA blood test.. a lot of auto immune conditions have similar symptoms and they can travel in groups..I have 3 (sle, sorjgens and Raynaud’s).. I totally meant to come chat at PPC but the day just wizzed by. I am sure we will get a chance another time.. tribe meet??

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