My Lupus Story
Before you read on, please let me first apologise for the rubbish title. My mind draws a blank to anything more interesting. I may even change it before I post it online for the world (or 2 or 3 people) to read it. I may also leave it, this little section about how much I dislike it pads out the rest of my writing.
Also, I wasn’t going to write a blog about having Lupus, and the story of my dealing with it. It’s not so much that I don’t want to tell it, but I wanted this blog to be more about my day-to-day life, observations, or any unparticular bollocks that takes my fancy. It isn’t about Lupus, it’s about me, and I am not definied by my disease…or I try not to be. Anyway…
The definition of the disease from NHS Choices website;
“The term “lupus” is most often used to describe a severe condition called systemic lupus erythematosus (SLE).”
“SLE is an autoimmune condition, which means it’s caused by problems with the immune system. For reasons not yet understood, the immune system in people with SLE starts to attack and inflame healthy cells, tissue and organs.”
The definition of me from my husband;
“The term “Emma” is most often used to describe a frustrating, yet adorable, wife.”
The explanation sounds simple right? Weird, but simple. Most cases of SLE occur in women of childbearing age. The condition tends to be less common in white people of European origin, and more common in those of African, Caribbean, or Asian origin. I’m in the white European category and I was 26 when I was diagnosed. They say that 26 is the best child bearing age.
Sure that sounds like an awful thing to have, it’s incurable and comes at many different levels from a rash, to death. But the symptoms of the disease often ale into comparison when you put them up against how it affects you and your family’s entire life. I think that’s something you don’t see until you’re on the inside. And, believe me, I don’t say this with any disrespect to those who aren’t dealing with something like this, it’s just hard to understand something. Even my husband, who is a caring and empathetic person, has admitted that this whole experience has been a shock, and he looks at certain this type of thing in a new light.
It was April 2008. I remember it well as my kids had chicken pox and I had bought them some cream from work. I’d been having pain for a while, in my hips and back, and had been to see my GP who sent me for an MRI. I had suffered muscular skeletal pain throughout my teenage years so I didn’t think anything would be serious. Initially, I was right. My Doctor called me at home and said the scan had come back clear so, as always, I was to take anti inflammatory pills and go and see him in two weeks if nothing had improved. I didn’t question it, I had no need to.
It was just a few days later when I was struck down with the worst pain I’d felt since childbirth. My husband put me in bed and tried to take care of me as best he could. I was so weak I couldn’t even lift a drink. At first we thought it was due to something physical I had done, combined with my already aching back, hips, and active lifestyle, it seemed logical, albeit a little on the severe side, At the same time, because of my history, it made sense. Of course this had to happen on a Friday when you know the Doctors won’t be open for the weekend. I suffered it out over the weekend, then on Monday morning my husband got me in for an appointment with my GP. I told him my symptoms and he immediately turned to me and told me I had an auto immune disease. Initially he said it was “polymyositis”, but that was later changed to Lupus.
We learned later that a diagnosis this soon was almost unheard of. It can often take people years to be diagnosed, and I’ve read some accounts of some taking 5 to 6 years. He had seemingly taken all of my unaccountable aches, pains, rashes, and other problems throughout the years and, added to this new pain, come up with a preliminary diagnosis. He immediately put me on a steroid treatment, right there and then, and booked me in to see a rheumatologist as an inpatient at the local hospital. I went to for my first appointment and she admitted me that day. I had so many tests in the 4 days I was in there. MRI’s, X-rays, biopsies, and they took so much blood it left me with a migraine. My husband was by my side as usual, my parents had our children for a night, and even my brother travelled 200 miles to see me, which meant a lot.
I was given medication called Hydroxychloroquine which regulates the activity of your immune system. I remember sitting in the bed as a nurse held up a piece of paper and asked me if I knew how to pronounce it. Now I think back, I’m not sure if she was taking the piss as I could have barely read my hospital wrist band at the time. Anyway, for those that wonder, it’s “Hi-drox-i-chloro-quin”. It is actually an anti-malaria drug and is often referred to as ‘Lupus Insurance.’ If I’m honest I still don’t know how they do it, but for me specifically, they help suppress the rash, mouth ulcers, blisters, hair loss, and many other things that were frequently happening before I started on them. They really are a godsend, and I dread to think where I would be now if I wasn’t put on them almost immediately. My husband, who has done a lot of research on Lupus, tells me how lucky I am. I believe him, and can’t thank my doctor enough.
For the next few years there were ups and downs. The downs are called ‘flare ups’, which is basically where your immune system just goes to town on your body. The ups aren’t really called anything specific, maybe just breathing space, or me time. A lot of people are prescribed anti-inflammatory medications to help, but over an extended period they can affect your kidneys. As well as the Lupus I was also diagnosed with: Chronic fatigue syndrome, which is exactly what it says on the tin. Fibromyalgia, which as well as widespread pain, people with fibromyalgia may also have: Increased sensitivity to pain, fatigue (extreme tiredness), muscle stiffness, difficulty sleeping, problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration, headaches. I’m not really sure how it works. All these things are associated with Lupus but are written as separate diagnoses on my medical paperwork.
This was basically what I dealt with for the next few years. Ups and downs, but mostly things I could deal with. Then I had a real problem, I got the flu. I‘ve seen people walking around saying they have the flu, but this was unreal. I spent three weeks in bed barely conscious, burning with a fever so bad that after it subsided I had sun burn. One of my few memories of that period is of my husband carrying me to the toilet. I couldn’t eat and only had a sip of water to take tablets and then I’d be back to sleep. It was as close to a coma as you can get, it would have been scary if I were at all conscious throughout it. Ever since then, with all the new problems I have had, my husband has regretted not calling a Doctor. He just didn’t know what to do. We have mostly been the type of people who hold off calling a doctor until we have no other choice. It was the same for me when he had appendicitis, I didn’t call the emergency Dr until it was on the verge of bursting which was stupid of me, but we both thought he had really bad gas and didn’t want to waste anyones time. Since having the flu my health has gone downhill. I developed chronic obstructive pulmonary disorder, for which I have to take 2 inhalers for, one of which is a steroid. I now have chronic kidney disease, psoriatic arthritis, and have recently been having neurological issues for which I have to go to London for tests including a lumber puncture, ugh.
All these things are awful but, as I mentioned before, the worst part of it all is the way it affects your family life. My husband didn’t get to sleep in the same bed as me for 18 months. The fibromyalgia and COPD cause my airways to weaken at night, meaning I have to sleep sitting upright. The problem is when I started sitting up to sleep I began to twitch violently throughout the night. I even twitched myself out of bed a couple of times. When I saw my renal consultant she diagnosed me with restless leg syndrome which is caused by the kidney disease. She prescribed clonazepam and I stopped twitching so violently. But still because of all the issues I have we can still only sleep in the same bed occasionally, which is one part of the disease resent the most. My husband having to sleep on the sofa nearly every night, it’s one of the things in life I am really sad about. Don’t get me wrong I know full well there are people in worse positions than I am, regardless of the illnesses I consider myself very lucky. Although I have days where I can’t help but feel sorry for myself I am well aware of how bad it can be.
You might be reading this thinking “And your point is?” or with the thought that maybe I’m looking for sympathy. Trust me, I’m not. I know I’m one of the lucky ones when it comes to this disease. There are so many people who suffer with this, and other diseases, far worse than I do, and I genuinely know I am truly lucky. Lucky that my doctor picked up on it so quickly. Lucky that I have a husband who will suffer me. Lucky that I already had my children (see my previous blog), and most of all, lucky that we have the doctors, nurses, and medical system that treats me the same way it would treat anyone else with this condition. There are people out there, with the exact same condition as me, who are really not so lucky.
Thanks for Reading.