This Lupus Life

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

Recovery: My Fit

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This is a somewhat long, rambling post. I hope my point will be clear. The main thing I want to say really is that in the past I have been less that frequent with my writings and I normally apologise. This time I am less sorry because to be honest I’m glad of my reason; I have been exhausted and busy. Some people are born with the desire to read every spare second of the day. Some instinctively can understand the workings of algebraic and trigonometric equations. Some people are born with that innate need to burn energy physically. I was from that last group.

I also have a strong natural yearning to create anything in any way possible but that is beside the point. I love to get physical in the athletic sense of the word, constantly finding new and exciting new places to try out my muscles and ‘mad skills’ tiring myself out. In my early years I was involved in netball, hockey, softball, tennis, swimming and golf. I won a gold medal in a regional gymnastics competition, a trophy in a pool competition (the balls on the table variety), I completed the ‘Rottnest Channel Swim‘ in my local pool (a distance of 20 kilometres).

But of course, that was prior to the onslaught of my body’s civil war. I accept now that I will no longer be able to run on a regular basis. I know that I need to maintain my muscle strength to keep my skeleton from collapsing in on itself and causing the Rheumatic pain issues once more and that I need to be very careful about how I do this. My cycling needs to be infrequent at best and I cannot commit to a sports team due to the nature of the exercise involved. I need to be aware of the amount of time and nature of each activity I indulge in so as to not over exert myself and incur the wrath of my body and Lupus.

Following my initial diagnosis in 2009 I went through a deep period of what they call in school as ‘feeling sorry for myself’ (I refer of course to the School Of Hard Knocks). It bowed often even into depression, as these things are won’t to do. The important thing is I knew I needed to get my head clear and start thanking the universe that I was in a position where I could recover.

During the next few years I alternated between high and low levels of activeness. When I started to pick up my activeness in any serious way I was 21 and started out with Matwork Pilates, quickly followed by Remedial Vinyasa Yoga. These were the saving graces that enabled me to re-enter the world of athleticism almost as I had left it.

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The years between then and now were mostly spent with bi- or tri-weekly yoga classes. I took up long distance cycling, had a few goes at martial arts and Cross Fit, once tried my luck at windsurfing and found a second love at Stand Up Paddleboarding. Of course i found the stick to break that camel’s back by mixing all of these, as well as the fact that Lupus seems to dislike me being happy. When I was afflicted with the Costochondritis the Rheumatoid Arthritis flared up again, as well as the general Lupus pains. Shortly after the masses set in and I began having seizures.

Over the last year I have been in a world of heartbreak sitting around watching others run and go to the gym while I couldn’t do anything for fear of losing consciousness or hurting myself. I couldn’t decide what hurt more, the loss of yoga or the loss of paddleboarding so soon after I had bought a new board and learned how to surf on it with confidence.

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Needless to say, I am at a point that I can try to ‘get back in it’. I have actually been allowed to do the things I love the whole time although I told people I wasn’t clear. To be honest I didn’t think the doctors (Connor and the Leos) at RPH Neurological Clinic really understood the full weight of my condition. If I was 20 metres off shore trying to catch a wave and I became dizzy and fell or staggered, well the dangers were high. To fall would mean being caught on a reef during the swell with now safe and easy way back to shore. The added concern is taking my board then back up to my car and driving home after one such episode. I am not familiar with anyone who I could surf with that could watch out for me and help me in a pickle. If I do I cannot remember them, oh the joys of Cerebral Vasculitis! The concern with yoga was mostly that I’d lose consciousness during an asana and would cause a serious injury from not coming out of it correctly. The inversion asanas in particular could lead to long-term, if not fatal injuries. In yoga my temperature and heart rate increase significantly also, which leaves most of my energy and body functions to keeping my body regulated, no time for focusing on mere consciousness.

Finally to my joyous news: I recently have had the confidence to start again. I joined in with a special yoga class with my long-time mentor just before Christmas. I didn’t last long but I was able to watch and join the yoga market afterwards. I did have a dizzy spell and forgot which sides were left and right immediately following which I took to the foyer for a small cry and a lot of half-hearted meditating. I don’t think I will be able to do yoga again for a long-time, not in the way I used to. This knowledge fills me with a sorrow I cannot describe.

My parents have been staying over Christmas and my mum has been taking me out with my gorgeous paddleboard. Just flat water, just in short bursts, yet we all start somewhere! My legs were weak the first time but I quickly got back into the groove. I think I could be happy taking this one as my main activity when I get my licence back.

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So I have been away from the quiet sedentary world that I existed in this past year because I have been walking, swimming, cycling and testing my boundaries each day. I am literally on the move until I exhaust my body and mind, at which point I go to bed to start over again the next day. I take anything I can, from tenpin bowling, crabbing, fishing, snorkelling.

Boy, does it feel good! IMG_1994

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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.

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