Back to the Beginning

It would have been better for me if I'd had some support over the years that Lupus invaded my life

Unfortunately, that was impossible.

First, because pre-1990s in Australia, women who reported Lupus like symptoms to their Doctor would most likely have been advised to take a 'Valium and have a nice lie down'. I know because it happened to me, more than once.

Second, it came into my life very slowly. Looking  back it is possible to identify Lupus like events from my early teens. But hey, I was young, healthy, fighting fit. It was impossible to see them as serious problems.

The birth of my second child, a daughter, was problematic for lost of external reasons. I was really worried after the birth because I couldn't move my arms to cradle her. I had no strength, my hands couldn't move into a cuddle position. Nurses assured me it was not a problem, I was just tired. I didn't believe them, this was more that tiredness, more than exhaustion; my bone marrow was tired.

I really knew I was in trouble when, after a late night parent/teacher meeting day, I filled my car with petrol and tried to clean the windscreen. I didn't have enough strength to wipe the water from the screen. After the first try, I tried again, and again, no luck. Even with two hands on the squeegee I couldn't budge the soapy water. The last 2 Kms to home were very long and dark that night. 

Worst memories of those early days

While, in the early days, I looked no different this Lupus invasion turned my life upside down. By the time the diagnosis was suggested and then confirmed I have given up so many things: tennis, swimming laps, walking, gardening, dress making and household management to name just the obvious. Less obvious to those outside my family was my need to sleep more than 10 hours every night just to keep going; the painful 90 minutes it took every morning just to shower, dress and eat.

Living with Lupus: things I really hate

• the random nature of the changes - the worst feature of the disease for me was not knowing when a symptom would appear. I could be OK one minute and unable to get out of a chair the next. It's very hard to explain how that works to family and friends, impossible to work colleagues and forget about casual acquaintances. They just don't believe you - you look OK, what can be that bad. 
• tiredness - first time I've ever admitted this; I used to sleep under my desk at work, or in my car in a park. Not often, but sometimes I just didn't have an ounce of energy left in me. And when you are that tired words just don't come our in the correct order, often the wrong words spew out and you talk jibberish! 
• taking medication every day - prior to my diagnosis I didn't even use low level pain killers, having to take up to 4 types of medication every day was difficult to deal with. I just didn't like it, and has an effect on your core self. Or, it did to me.
• dealing with medication side effects - reading the information brochures for  each script was essential. In the days before the WWW, I spend hours in my local Thornlie library decoding the terms, researching the dangers and understanding their impact. After I'd done that I could put it away and only re-check when something 'new' appeared in the way I felt/behaved ...
• change of personality - this should have been at the top of the list. The warning did come from a Doctor, in Blogs and information articles but I never, ever got used to it. It caused me more heartbreak that anything else. It is quite surreal when you have a callous, flippant or insensitive comment leave your lips that just doesn't belong to you. To make matters worse, there was no way to apologize, "sorry I have personality change issues", it just wouldn't have worked!
•  marsh mellow brain - working as a teacher (computer science)  this was a real issue; facts and figures were important and I had moments when I couldn't name a chair. The best advice I received was 'keep working as long as you can'. So I did. I spend hours every night researching the next days lessons, creating very detailed lesson notes that I could work from in class. The amazing thing was having done this my memory the next day stood up very well. Eventually, I stopped making 'perfect' notes and created things more like brain storming charts.

A quick review: 10 hours sleep needed to wake up half rested, full-time work, 2-3 hours need each day to prepare for work. It was demanding, everyone missed out. My kids, husband and me. No time for friends, or relaxation. On the positive side I felt like I was fighting back a bit. Guess who slept all weekend?

• having to walk slowly - 'bull at a gate' is a term my Mother used often when describing how I moved through life. She was a tad harsh but you get the idea. Taking stairs two at a time, striding not just walking and fitness activities all gone. Now it was stairs two feet at a time, shuffling not walking and a walk to letterbox was exercise
•  using a walking stick - I still remember the first time I used one in public; I had broken my vow weeks before but had only used it at home. It was a casual work dinner, and it was the last dinner I could get to. The consensus was 'at last, great move, well done!' but I just felt the failure of it. Something else lost. I should have taken up the offer of getting some art students to decorate it. At the time, I just wanted to pretend it would be a short term thing, and so not worth it.
• appearance - very trivial but so important. In the course of one school year I went from clothes I loved to trousers without zips or buttons. Lovely high heeled well shaped shoes to walking shoes; all day every day. How I have hated this type of shoe!
  
  
  My hands just couldn't be guaranteed to work when I needed them to as fast as I needed them to. And, my feet felt constantly bruised and broken so heels of any kind were out, out, out! What did I do? I started to visit the hairdresser often, with new cuts, colours and curls regularly appearing.

I could go on, but I won't. Short and sweet that was my plan. This is a bit long but it's been good to get it on the page.