This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

2016 Intentions: I wanna live like the common people

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Doesn’t that sound lovely? Intensions are so much more passive than resolutions in the connotations that are drawn to mind. To me the phrase “I intend to make these changes in 2016,” doesn’t leave me with quaking knees and crying hysterically as if I am standing on the edge of a ledge about to make yet another attempt at bungee jumping. “My New Year’s Resolution to…”, however, does. I just can’t handle that sort of pressure, you know? Perhaps, it is just me. I need to go on a few dates with an exercise routine before I spend the night with it, or even commit to it with convincing energy and a full 70 min workout.


Okay, Jessie, get to it. What is going on and where is this leading?

You may have noticed I took part of my title from a popular 1990’s song by Pulp ‘Common People‘. It started as a joke in a conversation with my brothers when I said, “I just want to do what I used to do. I want to be able to not worry about being close to an emergency department or a doctor that works weekends. I want to feel like a glass of wine at dinner won’t make me unwell, that I can stay out on a Saturday past 9pm and that a day at the beach is possible. I want to do yoga and surf again, run, be fit, do the gardening when no one is home. I want to be like everyone else. Normal!”

“You want to be common? Haha.”

I laughed and faked a posh British accent (circa The Queen), “I want to be a commoner. I want to live like the common people.”

And then I started singing. This song.

 

It is a tongue-in-cheek song lyrically and it is not really relevant to me in that I do not deem myself to be financially, intellectually or in any other way more ‘elite’ and ‘well-off’ than anyone else. I know there is more to life but I do not try to place myself on a scale anywhere.

Except with health. I have been more unlucky with my health than the average person, considering my age. (Even now I still hedge my position with vagueness.) So now I am determined to get better. I’ve had enough. I’ve had the big glowy thing from the big fall. I’ve had the month in hospital and my mother care for me for three months. I’ve had the brain surgery, the chemotherapy and finally the triplicate immunosuppressant therapy. And then I had Christmas and told everyone I’m done. Not in a giving-up-way but in a fighting-back-guns-blazing-way.

2016 I am going to live like the common people. I’ve had gastro and several bouts of colds. I’ve had allergies from plants and roses and wind burn. But these are not choices, nor things I have hunted down and actively invited into my life. When I say I want to live like the proverbial ‘common people’ I intend to live as follows.

Less medication

I do not take medication ‘for the fun of it’. I am also one of the population that has faith in medication and does not feel as some are more hassle than they are worth. Some of my medications are difficult to manage in both side effects and doses. None of my medications have been optional this past year. From the anti-depressant to the ones treating my lesion, the ones treating my seizures and the one stopping them all from eating a hole in the lining of my stomach, I can say I’m not taking any unnecessary medications.

Prednisolone: As of December 21st 2015 I was able to lower my prednisolone (steroids for immune suppression) from 17.5 mg to 15 mg. As of 4 January 2016 I dropped a further 2.5 mg to 12.5 mg. All going according to plan on 11 January this will go to 10 mg, which is where I will stay for the remainder of January. Given I have been on a high dose (50 mg) of this potent drug since August last year, I am not able to move down too quickly. This is the first big drug to go and we are most excited about this. Gallowe is practically jumping at the prospect of it going .

Pantoprazole: As I finish the Prednisolone this one will just go. Like that.

Venlafaxine: Given my difficulties, this one will be trickier to predict. It is my hope that towards the end of this year I will be able to ‘free ball’ it and just deal with life without this stabilising presence.

Sodium Valproate: I will likely be on this for a few years at the very least. This prevents me having seizures so it may even be a ‘lifer’.

Hydroxychloroquine: To be honest, I don’t want to stop this. The last time I was off it for a bit (accidentally) I developed some horrific skin lesions and my Lupus and Arthritis went into overdrive.

Mycophenolate: I have been told for certain I will be on this the entire year, if not two or three following this.

More exercise

I have to be careful here. I cannot allow my heart rate to increase when I am not in a safe environment. I cannot go anywhere unassisted where I may become confused or disoriented. I should not do any exercise unattended. I must not do impact sports or activities, nor prolong sporting activities and sun exposure. Basically I have to be inside in a group or supervised setting near a phone and a ‘stop button’ in a low-impact or minimally aggravating environment.

Well gone are the days of street running, but also surfing, stand-up paddleboarding, outdoor yoga, 10 kilometre ‘adventure walks’ about Perth and long distance cycling along the freeway, coast or river. I cannot even be in large classes for yoga and pilates, nor in classes where the instructor isn’t also qualified in physiotherapy.

The danger with yoga of any kind when you are at the level I was, which was advanced, is that if your body is not proportioned for the maneuvers you end up working for years to be able to perform contortions that are contraindicatory to a healthy body such as I aspire to. Yet most yoga teachers aren’t taught that as they aren’t taught physiotherapy, just advanced anatomy, so they will just keep pushing. But don’t tell them that! Yoga at home is dangerous because I’m unsupervised.

So I am left with the only option. A gym membership. I find it hard to motivate myself for even basic activities such as showers and getting out of bed, brushing my hair and making my own coffee. The gym? That’s two kilometres away! AND it is Summer.

Add on to this that for as long as possible I am determined to go for a walk each day. In Summer this will need to be in the evening so the sun has gone and the temperature is cooler. Doable. I’ve actually been writing to you on my walks once or twice! 😉

Health Challenges

I will try a few of these, they float around social media often enough! The first is from Bad Yogi and started Monday 4th January 2016. a 14 minute daily video of less strenuous yoga which I will do while my housemate Bow watches TV. I like her lessons as she feels approachable, these are free online (youtube) and she doesn’t do hard things or things that don’t make sense. Plus 14 minutes isn’t that long. The first video was on Lower Back Pain.

My next challenge, parallel to Bad Yogi, is 100 days of Healthy by local group Green Goodness Co.

My Diet

I want to be clear here that I am refining the way I eat, but it has been my intention that for the next few months I take you on a journey to explore popular and not-so-popular eating choices. I will be the guinea pig and my mantra in determining which programs to test is:

I want to be healthy. I want to be free from as much medications as possible. I want to use diet and lifestyle to send my illnesses into long-term remission.

You will see I actively avoid some programs. I will be outspoken about those so you will get warning if you like them. I will try always to use research and will justify why I have my opinions, but I will also not push any particular program your way. So no favouring paleo/ no sugar/ low carbs/ gluten free/ vegan/ rosehip oil/ blood of virgins/ eye of newt.

Just saying.

These are my intentions for 2016.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

2 thoughts on “2016 Intentions: I wanna live like the common people

  1. Pingback: A lack of inflammation | This Lupus Life

  2. Pingback: January, starting my recovery | This Lupus Life

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