Here I open up a bit about my experiences in the health sector while going through diagnosis for a potential autoimmune disorder (or two). I hope that by reading these, people are able to understands the day-to-day life of someone with a chronic illness, to find emotional support for their own health journey, as well as know that the medical industry should not be a one-size-fits-all approach.
WED, 1ST FEB
Ultrasound on my right foot. I have recently received an x-ray on it but had a waitlist for the ultrasound as technicians for that are a bit more rare than x-ray technicians they told me. About 3 weeks ago I stepped on the right foot too hard/funny after having only 4 hours of sleep (which flares up my chronic illness symptoms and makes me more susceptible to bruising and pulling muscles).
FRI, 3RD FEB
Lung function test at St. Vincent's Hospital. This included breathing into machines so they could test my lung capacity, if Ventalin changed my lung capacity, and one where I sat in a telephone booth-like box and panted quickly (I'm not sure what this was testing exactly). This test was because I have asthma symptoms but no former diagnosis of it.
After this I went to pathology in the same hospital, but they were unable to do my test because they couldn't process the paperwork. Second unsuccessful blood test at this hospital.
Went home and napped before visiting pathology at a hospital near me. I laid down as when I went there 2 weeks ago I fainted. Was dehydrated so blood took a while to drain into tubes.
WED, 8TH FEB
Had a job provider appointment as part of my Centrelink obligations. They "cannot" do phone apointments so I had to get up early and spend money on an Uber as I can't move much in the mornings. They looked at my circumstances - that I am currently self-employed - and asked for more information on what jobs I search for and what type of work Iβm looking for. I explained to them that Iβm too unwell to work. They looked at my profile and said that Centrelink was currently processing my claim that I have medical anxiety from about five months ago. They suggested that I keep pushing for that to be processed and I focus on diagnosis rather than work.
THU, 9TH FEB
I had to walk to an appointment. It took about 25 minutes. The sun made me feel so sick it makes me wonder if thatβs a trigger for me. I have symptoms very similar to Lupus so this made me think I should see how better sun protection goes.
MON, 13TH FEB
Left the house at 10 for a therapy appointment at 11. This is rather early for me. I generally donβt leave before midday. Knew I had to get food on the way as without it my pains would flare up under her fluorescent lights. When I got there she almost immediately turned them off because she remembers that they give me migraines. I spoke to her about how Iβm getting very depressed and stressed out about my lack of mobility and ability to socialise. I told her how simultaneously isolating having a chronic illness is, while Iβm really struggling to manage my health living in a busier and more high strung environment. She reminded me that comparing myself to others will always lead to anxiety and depression because we inherently focus on the negative, and the best thingΒ to do is just think about my own life and where I want to be. She also reiterated the point that the more integrated you are in society unfortunatelyΒ everyone is looking out for themselves and as much as I can hope for understanding when I express needs and limits, I will need to accept resistance.
MON, 20TH FEB
I had a general eye test with the optometrist. He began by doing the normal reading and vision test. Then he explained to me he was going to do an eye pressure test. He began by putting eyedrops in my eyes which made me anxious to not be prepared for because I have anxieties around eyeballs and I donβt enjoy the drops. And then he surprised me again by putting dye in my eyes and then did an air pressure test blowing bursts of air into my eyes. About two minutes after this I got incredibly faint said to him I need to go get fresh air, opened the door and fainted out of it. He said I banged my head very hard and to look for a concussion and my right knee hit the door on the way out. It almost immediately bruised. There was a cut on it and by the end of the day my entire right knee was covered in bruises.
TUE, 21ST FEB
I had a follow-up appointment with my GP to look over all the results of everything. She told me my eye test came back completely fine and that I have no issues with my eyes that could be causing the migraines. She explained to me that the lung function test showed that while my lung function is slightly low it is normal for my size and weight because I have a low BMI. She said I donβt have asthma; my thyroid, kidneys, and liver are fine; and rheumatoid arthritis did not test positive. She explained to me that my blood tested positive for something called anti-phospholipid syndrome or APS. She said this is an auto immune disorder that causes closing of the blood and is likely causing my migraines, my asthma symptoms, and a lot of my pains. She wrote a referral and sent it to the rheumatologist at Royal Melbourne Hospital. She didnβt explain too much about the condition, I think because she didnβt want me to have anxiety about it. She encourages me continuing to make lifestyle choices that make me feel comfortable until I can get a diagnosis such as managing my diet, smoking cannabis, and not working.
TUE, 28TH FEB
Had another job provider appointment as part of my Centrelink obligations. These are every two weeks and I need to go in in person. I had a new person. He said that my medical exemption for anxiety had been processed and they said that I can work 15 hours a week. I explained to him that my symptoms make me unable to work. He heavily suggested that I try to get on the disability payment because my condition is ongoing, chronic and valid for that criteria. He also recommended I take it in in person so it gets processed quickly. I generally find that people that work for the government do not like the government.