Living with Lupus…and why I’ve been quiet lately

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Per my post’s title…I have lupus. I spent a lot of time trying to decide if I should blog about this or not but given how much of an impact it’s had on my life these last few months (and will continue to have in my future) I’ve decided to be open and share this experience. Get this coincidence! – May is Lupus Awareness Month and May 10th is World Lupus Day.

I’m truly hoping I can provide relief to anyone else who’s experiencing this (or similar medical issues), encourage those with health issues to just keep doing what you can do, and hopefully inspire those who are able to be active to not take it for granted:  get out there as you never know what will happen! I’ve always supported anyone who can just do what they can. It’s about the effort and intention, not the end result. Whether you’re training for a marathon or just trying to walk around the block: focus on being proud of what you can do.

So here’s the bit of history and backstory, along with what the heck lupus is!

At the beginning of March, I fell ill with what I thought was simply the flu that was going around. Within about 24 hours of that first throat tickling sensation, I could barely walk due to intense pain in my heels and feet area. This pain migrated around my body, settling in all joints: hands, fingers, elbows, shoulders, hips, knees. I could barely get off the couch nor could I even type. It was intense, fast, and completely debilitating. At this same time, I was experiencing extreme fatigue: sleeping between 15-16 hours per day. The smallest walk (I mean, 500 metres in length) would require a 2 hour naps afterwards. On one hand, the symptoms were so incredibly horrible but – the silver lining – my blood work came back with all sorts of indicators and combined with the quick onset of symptoms, I was able to see a specialist within a few weeks. Near the beginning of April, I was diagnosed with lupus.

The more I open and share my diagnosis, the more I’m finding out how common lupus is. Lupus is an auto-immune disease. However, because symptoms manifest themselves in so many different ways (the “Disease of 1000 Faces”), lupus can be difficult to conclusively diagnose. Lupus is an auto-immune disease. There are lots and lots and lots of different auto-immune diseases but, in essence, my immune system is on some hyper-overdrive and instead of just killing the ‘bad guys’ (like bacteria and viruses), it’s attacking and killing the good guys, too. It’s causing all sorts of inflammation within my body (hence the joint pain) and my poor body is just confused and doesn’t know what’s going on. In addition to the joint pain and exhaustion, I’ve experienced some lung/breathing pain as well, the ‘butterfly’ rash, and general muscle achiness.

Prior to my diagnosis – when the pain was just horrifying – there was about 2 weeks in which I was preparing myself for the possibility of living in a wheelchair. I had no idea what was happening and I could just barely get up to go to the bathroom and, at less than 900 sq ft, our house is one level and by no means was the couch to the bathroom a great distance to walk! Although I’ve always been in awe of para-athletes, reading the inspiring stories of the hurdles some people have overcome brought me great comfort.  And it always brought me back around to being appreciative of what I have: a network of family and friends that are here to help and support me, a financial situation that does not force me to work, and one particularly close friend who also has lupus and has been an absolutely, solid rock for me.

I’ve now been on a motley of drugs for about a month and they do seem to be kicking in. Getting used to taking pills everyday has been quite a change. It’s been really hard for me to accept that I will likely be on some kind of medication for the rest of my life. The first morning I took them, my thoughts were already on how to reduce them but yet another friend said to me “It’s ok if you have to be on them and you may have to accept that”. Believe it or not, this was another huge mental hurdle I had to overcome: the idea that it’s “ok” to be on these meds for the rest of my life. I am looking into alternatives – I’ve already been to see an amazing naturopath here – as I do believe I can take steps to help maintain my health (and keep flare ups to a minimum) through diet and stress management but right now, I need the drugs.  And so I take them.

I’m sure I don’t really need to spell out exactly how I devastating it was for me not to be out and moving around. March was an EPIC ski month and I missed so many pow days (but, a true indicator to not being well, I didn’t even actually “miss” them since I couldn’t even fathom putting on my ski boots!) and now that we’re in biking and hiking season, I’ve been desperate to get out and “do stuff”. But my entire body is worn out and I literally need to rebuild myself.  I have to set my new standards and lower my expectations to the reality of what I have. This entire time, however, has been focused on how to continue getting up and getting out. In spite of pain, even the medical experts will tell you how important it is to do what you can. For me, I started with a simple (flat), 800 metre loop around my house.  It took me 20 minutes and 2 hour nap the first time but just having the physical ability to walk – outside – made me so incredibly happy. And I’ve just been slowly building from there; recently culminating in my first mountain bike ride!

On days when I’m feeling too sore or tired, I’m learning to truly scale back and this has allowed me to start my new hobby of birding (heck yes, I’m becoming a bird-nerd!). Meditation has something I’ve been interested in for a number of years but I’m finally making the time to fit it in and I’ve worked up to 15 minutes per day now. Even when I had incredibly painful days – days I couldn’t even sit outside – I could sit on a chair or my couch and mediate. I’m learning how to slow down and calm my mind.  More reading, less Facebook!

Many people ask if this has been related to my illness on the PCT last summer.  Officially, no: my doctor’s don’t believe there is a connection. However, I believe that they are connected in some way.  How can the gut and your digestion not be related to what else is happening in your body?  Was it a cause? Was it a symptom? I’m not sure and I’ll probably never know.

This experience has truly shown both Adam and I how quickly something can happen and the importance of living and doing what you love. There’s no point in being unhappy with life: we only get one. I’m so happy that I’ve been able to have incredible adventures (cycling Canada, hiking the CANOL, hiking California) along with living in a wonderful town surrounded by people who choose to live their passions. Happiness is a choice and I believe the first step in that choice is getting outside.

Being outside makes us happier and healthier so let’s all choose to get out!

 

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There are 2 comments

  1. Judith Lawrence

    So sorry to hear about your diagnosis; I am sure you will be the type of person to fight through it and still leave an active and fulfilling life.

    Like

  2. Elaine Klemmensen

    Hey Tara, I just wanted to say hang in there and stay positive. I know how hard it can be to be surrounded by active people, trails calling to you and to be struggling with chronic pain. Take it one day at a time, listen to you body and know there are brighter days ahead. Thinking of you and sending healing thoughts,
    Elaine Klemmensen

    Like

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