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


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