As I mentioned in a previous post, I have mobility issues, and regularly use a combination of crutches, a cane, or a wheelchair to get around. This is because if I was on my feet for more than a few minutes, my hips, knees, feet and lower back would start complaining, and then start screaming at me. In other words, it is painful for me to stand for more than a few minutes at a time. And the worst part of it was? I didn’t know why. Every GP and orthopaedic specialist I had seen could not explain why. I even once had this doctor insinuate I was faking it, just so I could use a wheelchair.
This week, after months on a waiting list, I saw a rheumatologist. Nice lady too. And within 15 minutes she gave me a diagnosis. Benign Joint Hypermobility, also known as Hypermobility Syndrome.
It is a connective tissue disorder. A lot of the joints in my lower body over-extend themselves (similar to when you are double jointed). I never thought anything of it. I thought everyone’s knees locked backwards, the way mine had since I was a child. Anyway, what happens is that my muscles in my joints are forever working extra hard to keep the joints in place, that they are becoming worn and tired. It is a genetic condition, and I have since found out that my younger sister, who lived in Melbourne, was diagnosed with the same condition six months ago. We hadn’t realised that it was the same thing, as for her it manifests in joints that are easily dislocated and ligaments that tear easily. For me, I just had very sore joints that I couldn’t stand on.
I have been given some medication specifically for chronic pain (which doesn’t have any narcotics or opioids, which I always hated), and been referred to a physio which specialised in a pain management, and they are going to revaluate me in six months.
But the truth is, I couldn’t care less what my diagnosis is, or whether it is treatable or not. All I cared about was that I had a diagnosis. I had a reason, an explanation, for what was going on with my body. One of my biggest issues in getting help and accessing disability services has been my lack of documentation to justify my needs. So many disability services require a definitive diagnosis before anything can be done. I still don’t have access to everything (Centrelink disability payments have a criteria that you have to be permanently disabled for the next two years…Now I am getting treatment, who know what state I will be in six months), but it means I can access some things.
So what happens now? I go to the physio, I take my medication, and enjoy my new wheelchair (a second hand chair which I paid for out of pocket, as I have neither the funding nor the money for a new one). That and continue my campaign for my apartment complex to install a ramp at the front gate, so I don’t always need to enter from the back alleyway.
By Suzie Day
Originally published on CatalogueThis.com
One thing about me: I have difficulty with mobility. I have been using crutches to walk increasingly since the beginning of 2010, and have used a wheelchair as needed since March 2012.
My current employer, FPWA Sexual Health Services, does not have an issue with this. Considering one of the services FPWA offer is sexual health education for people with intellectual disabilities, and the promotion of sexuality and disability, I have never felt that there was a chance I would be discriminated against because I can’t shelve the returns on the top shelves.
This year the Health Department received a 10% budget cut, and as they are our main funding body, those cuts have passed on to us. This means that in April, when my contract with FPWA runs out, they are unable to fund an extra staff member. I am not alone in this. A number of the Education Unit and the Clinical Services staff have also had hours cut, contracts not renewed, or been forced to resign.
So now what do I do? Before I got my wheelchair, I used to apply for jobs and not tell them I should be using crutches to walk. I would just limp heavily and take a handful of pain meds every day, which didn’t really work. After all, there is no way to prove it, but the moment you tick the box that says I have a disability or a medical condition, you know your CV goes to the bottom of the pile. Legally, I don’t even have to declare my disability until after I have a job offer, but a wheelchair is a bit hard to hide.
I am worried about finances. My partner is autistic and has bipolar disorder, and is unable to work. Right now, we are living off my wages, her pension, and my meagre Centrelink Newstart Allowance. Yet things are still pretty tight when we get to the end of each fortnight.
Because of my income levels, my Centrelink payments won’t change when I lose my job. This means that we are going to be relying on around $1000 per fortnight, for two people. That works out to $250 per person, per week. There is never much left after rent, and we are still trying to save money for the wedding.
I am worried about transport. Most library jobs are in public libraries, or in schools. Wherever I work, it needs to be easily accessible by public transport from the city. I can’t drive, and I am not eligible for taxi vouchers.
I am worried about my studies. I only have four units left to complete, and I am doing two units per semester (that is, Part Time). Hopefully, I should graduate at the end of next year, but usually you can’t get the librarian positions until your degree is complete, and Library Assistant positions have a lot of job competition. I want to work. I want to support my family. But when a local government official looks at me, they see someone who can’t reach the bookshelves. They don’t see someone with an education, a family to support, a wedding to save for, and a drive to succeed. All they see is the chair.
By Suzie Day
