Thursday, September 29, 2016

Invisible Illness Week

Hi everyone,

September 26 - October 2 is Invisible Illness Week. And I'm a little late to the party but I wanted to share a little bit about my personal battle with an invisible, chronic illness.

The illness I live with is:
Rheumatoid Arthritis

I was diagnosed with it in:
June 2006. I was halfway through Year 12.

The biggest adjustment I've had to make is:
 Learning to live with pain, but not let it control what I chose to do.

Most people assume:
That I'm too young for arthritis.

The hardest part about mornings are:
Waking up with something different hurting. And then getting out of bed and stumbling to the shower.

My favourite medical TV show is:
Grey's Anatomy. 13th season and still going... I kind of got to the point where I just have to keep watching it now.

A gadget I couldn't live without:
Laptop. Essential for my study. I can't handwrite for long, but I can type for hours (usually).

The hardest part about nights are:
Trying to wind down and shut off my mind.

Medications I take:
Plaquenil, twice a day. Adalimumab (humira) injections once a fortnight. Variety of supplements. Pain medications - anything from over the counter to opioids. I generally have a fairly well stocked personal pharmacy in my handbag at all times.

Regarding alternative treatments I:
Am relatively open minded. As long as it doesn't include the word "cure".  I have an autoimmune condition. You can't cure it. I'm currently interested in how diet can influence autoimmune conditions by way of the gut and am researching The Autoimmune Protocol. I intend to do another post about this shortly as I know it will raise a lot of questions if/when I decide to commence the elimination phase.

If I had to choose between an invisible illness and a visible I would choose:
Visible. But my answer may chance depending on the day. It just seems that would eliminate the feeling of needing to justify and explain yourself all the time.

Regarding working and career:
I'm lucky enough that I am well enough to perform my chosen career. I'm a nurse, and a midwife, and an ongoing student (currently undertaking a Graduate Certificate and a Masters). My decision to work in a day surgery unit (although I do love it!) was initially bought on by my knowledge I would not be able to handle a heavy medical ward. I have a strong focus for education and aim to teach at a tertiary level one day. Again, this has been influenced by the knowledge that I won't be able to work clinically forever. I also don't work full time. Shift work is tedious enough, but throw in an autoimmune condition and it really can cause havoc.

The hardest thing to accept is:
Hmm, this is a tough one. One thing that does spring to mind though is that I have been told my numerous orthopaedic doctors that I need shoulder replacements. But I am too young. So I just have to deal with it until I hit some magic age where they will do it.

Something that I never thought I could do with my illness that I did was:
In general: travel.
More specifically: climb Mt Kosciuscko, in well under the estimated time frame.

That may have sprung to mind so quickly because I've been looking at photos from our trip in 2014.

Something I really miss doing since I was diagnosed is:
Exercising without fear. When I was diagnosed, I was doing and coaching gymnastics as well as playing water polo. I was never a huge sports fanatic but I did move. Immediately after I was diagnosed, the fear was put into me by a less than amazing rheumatologist and I basically stopped everything. Down the track, I realised how important exercising and staying moving actually is but it is hard to start back up again when you've stopped. I walk, I swim sometimes, do body weight exercises, yoga, pilates etc. But nothing too intense. We hike up hills sometimes but I am always cautious and worried that every bit of pain might be joint related and cause me grief later, when actually, it's probably just good old muscle pain.

It was really hard to have to give up:
At the time, coaching gymnastics. I absolutely loved coaching and teaching the little ones especially. And the friendships I'd made while coaching the teens/young adults have faded over the years (as they likely would have anyway - that happens!). But when it became near impossible for me to even do a tuck jump or a forward roll, I knew I'd reached my limit, so I let it go.

My illness has taught me:
To be patient. And not take anything for granted.

One thing people say that gets under my skin is:
Do you take glucosamine?

I understand people are trying to be helpful and that rheumatoid arthritis is not a condition everyone knows about. People hear the word "arthritis" and relate it to what their grandmother has, or what they get in their little finger sometimes. Glucosamine is used as a supplement in people with osteoarthritis to help build joint cartilage. Osteoarthritis is a condition where there is a deficit in cartilage, so this helps. RA is an autoimmune condition. My immune system attacks my joint cartilage. Glucosamine would help develop more cartilage, which my immune system would then react to and attack. Thereby causing a "flare". Fish oil and turmeric on the other hand, are beneficial supplements and I do take those.

But I love it when people:
Understand. Or even just try to understand. Coffee instead of a walk because I can't handle it on the day. A sympathetic text after I called in sick for a shift. Those kind of things.

Best piece of advice for someone newly diagnosed:
Take your medications. For sure, research alternative therapies. But take your meds in the meantime. You can always wean off them if the alternative therapies are helping. I was diagnosed when I was 17 and after an extreme allergic reaction to my first medication, and a bout of weight loss and decreased appetite with my second, I became a little rebellious. And I assure you, that is what has caused such bad damage to my joints, especially my shoulders.

Thanks for taking the time to read this. If anyone has any questions or topics they would like more info on, please feel free to let me know by leaving a comment.

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