Well so what prompted that title, every couple of weeks we end up travelling 3 hours up to the big smoke for one appointment or another. Now normally that would not be a problem, but lately it has. 3hrs to the city, sit around for another couple of hours then 3hrs back normally an easy day out, but it has been taking its toll lately, so we have decided that to save both of us we are going to do more overnight stays to freshen up before coming home.
We are lucky here in Western Australia as there is a good travel assistance programme that enables you to put in a mileage claim, and get some money back for parking and accommodation, so we are taking advantage of that. Sometimes I used get a little proud and feel that it is not necessary to take handouts from the government, but now that our circumstances have changed I have no issue with it.
The other thing we are doing is buying a wheelchair for Julie. It is not an everyday requirement but, it has made things easier when having a big day out shopping or going to an event, it would have been very handy when we had a week up in the city as some of the things we wanted to do would have resulted in Julie being dogged tired for the rest of the week, I am getting quite handy pushing a wheelchair now, even put together some moves dancing around Target, not that Julie appreciated it!
So we are now looking to the future and planning ahead, as I have more time on my hands I want to look at raising awareness of Lupus in Regional Western Australia, starting in the South West, where we live.
We now have a couple of walking sticks for Julie, and I have amassed a little first aid station with Blood Pressure monitor, Thermometer, Blood Sugar Level monitor, Pulse Oximeter, a torch for checking her pupils and a notebook to give to the ambulance my observations, if we need to call one.
The other great thing I have done is put together a care plan file, containing all the relevant information on Julie and her lupus history. As a carer it is harder and harder to remember everything so having this file is a great help. It is just a word document with a number of sections, the first is Julies details including her Medicare number and Disability pension details, her emergency (Me) and alternate emergency contacts (Her sister). Next comes general information about her condition, such as any diagnosis (SLE, Fibromyalgia etc), her allergies, a brief medical history and her medications. I then go on to listing her medical care team including her GP and any specialists. Next comes any emergency hospital visits, then a timeline of her medical procedures from a simple biopsy to major treatments she has received. Finally some general information, such as how we confirmed her allergy to all Penicillin based medications and lupus medications she cannot take and why. This file now goes with us to any medical appointment.