When Pain Is All You Have


Hi everyone, 

A while back I posted a blog called ‘On the Cusp’ ~ I felt like either something really great or something really bad was just around the corner. Turns out, it was the latter. 

For the past month, I’ve been battling chest pains/pleurisy/chest infections which parlayed into horrendous fatigue, breathlessness and general lupus overload. 

Tonight I’m writing at 2.15 am because I can’t sleep and I’ve just cried for about 15 minutes. Tonight must be the 28th night in a row that I’ve not been able to lay down due to the inflammation in my chest. It’s late and there’s none I can call because everyone is asleep and they have to work in the morning. They wouldn’t be able to help me anyway but it really hit me just now that I’m alone. I feel so sad and frustrated but also really frightened because it seems I’m only getting worse. 

(Just to clarify, I have the best friends and family anyone could ask for. It’s just that I hate calling late at night)

Pleurisy is inflammation of the sheet-like layers that cover the lungs (the pleura).The most common symptom of pleurisy is a sharp chest pain when breathing deeply. Sometimes the pain is also felt in the shoulder.(www.nhs.uk)

I first had pleurisy before my diagnosis in 2004 and maybe 8-10 times since. This time however, I’ve not coped well and I’ve been pretty much confined to my house. I’ve seen my doctor, been to the emergency room and had the ambulance round all in the last 3 weeks. My daily intake of pills has tripled and I’m so frustrated with it all. In spite of the pain, the breathlessness and my inability to do much for myself, the doctors tell me that my scans, tests and X-rays are all ‘fine’. I should take more painkillers and ‘see how I get on’.

The pain is simply unbearable. When I attempt to lay down, my breathing becomes restricted yet rapid and shallow at the same time. The chest pain is stabbing and it radiates up into my shoulder. I wouldn’t wish this on my enemy. Pleurisy can occur without lupus but   with lupus, it takes far longer to recover. 

I’m just so angry that I keep getting these massive setbacks like plurisy and pericarditis. It takes such a long time to recover and inbetween, I still have to live life/go to work/fulfil obligations. 

Right now, it literally feels like pain is all I have. I feel like two people because I can’t let pain beat me. There’s the professional me where I’m doing all I can to appear normal and together and do a job I know I’m damn good at. Then there’s the sick me, the real me and the person I can be whenever I’m not in front of other people.

Having lupus and fibromyalgia makes things more complicated because I just can’t identify what’s causing the pain. I just know that it’s chronic and this means that it will always be part of me. What do you do with that? Am I supposed to accept it or am I allowed to be really, really angry, bitter and negative?

I’m physically drained and I don’t get much sleep. My psychosis is so bad at the moment. The episodes are much more frequent and so upsetting. There’s literally no escape from pain and upset at the moment. 

Pain is something I’ve posted about before but recently, pain is the most constant and predictable part of my life. It’s there ALWAYS. it’s something I feel at some point everyday but over the last few weeks, it’s ruled my life. Tonight I just had enough. 

Thankyou for reading xxx


Crazy Thought…


This is a short one, I just wanted to share a crazy idea I had.

Just imagine there was a Lupus simulator experience that people could try. It would be an insight into  the most challenging pars of chronic illness and a way to help explain how illness impacts your life! Anyone up for the experiment would do it for a whole week. 

It would be a controlled experiment where people would get to actually feel fatigue, feel pain (both minor and excessive), feel emotional pain, feel stress, feel awful whilst looking healthy on the outside and take medications (placebo ofcourse!)

Perhaps they’d also wear weighted clothes to see how steroid weight gain feels. Perhaps they’d try to book simple things like travel insurance after disclosing their illness. 

What about work? In this imaginary scenario, the person would wake up still felling tired, they’d ache, they’d still feel incredibly fatigued, would most likely feel sick or nauseous BUT they’d still have to go to work. 

At work, they’d use all their energy trying to appear ‘fine’ or ‘normal’ and after work, they’d most likely crash and feel too awful too cook or do much around the house. The next day would be exactly the same. 

I wonder how many people would be up for a challenge like this? Would friends and family try it? 

Maybe one day something like this would exist! And not just for lupus but for other chronic illnesses too. I’d like to think that if my loved one had a chronic illnesses and I could see how it actually feels, I’d want a better insight. 

A good idea? Comment below on tweet sickoflupus. 



60 Second Post


Just wanted to remind you that it’s flu jab season! 

However, It’s really important that you double check with your personal doctor as some medications can leave you contraindicated. 

If you live in England, doctors surgeries are currently promoting the flu jab for those most susceptible – and their carers. 

As you may know, if you have Lupus, the flu can leave you extremely unwell and unlike ‘healthy’ people, it can take weeks to recover. 

I had my free flu jab today. It takes less than 10 seconds and shouldn’t hurt. HOWEVER, I’m currently in a ton of discomfort and I feel massively unwell. The same thing happened last year with my flu jab so just bear that in mind. 

That’s all folks! 





This will be a very short note as I’m recovering from Pleurisy. I had breathing problems and horrendous chest pain early this week and went to the emergency room. They’ve given me medication and advised lots of rest. 

I just wanted to talk about how Lupus gets lost amongst other, bigger causes and charities. (And it’s not just Lupus, there are so many other causes that we just don’t hear about.)

I heard something recently that I can’t stop thinking about. When I went to hospital this week, my doctor commented that Lupus doesn’t get the real attention it deserves. In his opinion, “Lupus isn’t one of those trendy diseases.” He compared the publicity to that of cancer and spoke of how autoimmune illnesses will never be able to compete. 

It’s always so disappointing when I’ve seen the destruction that Lupus can cause yet I also see it go unnoticed in the public eye. Illness isn’t a competition and there are many conditions that I myself have never even heard of, but year after year, October rolls by and if you’re lucky, there might be a short article in the press. 

In the UK, it’s currently Breast Cancer Awareness Month. An incredibly important cause. The amount of publicity that it will receive is astounding. Some of the worlds largest companies will be supporting the cause. The fashion and beauty world will sell special edition, pink items with proceeds going to charity and TV personalities will wear a pink ribbon. Tomorrow, I’ll be wearing pink to work as my company are also supporting the campaign.

I just wish that one day, I would hear someone say; “You know that incurable illness that devastates the lives of millions worldwide and can be completely debilitating, the one that causes pain, rashes, inflammation of any part of the body, fatigue, miscarriage, hair loss, depression, organ failure and can also kill? Well, we’re going to support that cause on a really big scale.”

Until then, we will have to make do with sharing the stage with the big dogs and wait our turn. 

Thanks so much for reading. 

I’ll finish with a thought from Dr Gregory House.  He understands!