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The World From Upside Down.....

The World From Upside Down - Vicky Marsden

7 years ago my life changed. First the death of my mother from Stomach Cancer. Caused due to the medication she was taking for her Systemic Lupus – a disease where the body immune system attacks the body. To say this was a stressful time was an understatement. As I was muddling through life, stressed, trying to find some new kind of normal, I began to feel unwell. I thought initially I was tired. My joints started to swell, mouth ulcers, low mood and Iritis – even my eyes were inflamed. Eventually, I too, was diagnosed with SLE (Lupus). This would leave me some days being unable to walk, talk and think. Eventually, as Lupus it does it attacked my internal organs, - namely my brain and kidneys. I lived life in a fog. In the middle of this my son was diagnosed with Autism. This began a whole new battle, trying to educate myself and others and gain the correct provision for him. He was isolated firstly by his autism, then by his peers. His teachers told me he was naughty. I knew he wasn’t. I just needed to reach him. I educated myself, as a registered mental health nurse I was fortunate enough to be given the opportunity to enrol on the MA Autism. However working, studying, fighting, feeling alone made my stress levels raise – the higher they raised the more ill I became. I couldn’t think, walk, talk. I ended up signed off work for 6 months. During this period I led in bed too fatigued to do anything at all. I began immunosuppressant therapy. A small dose of chemo every week. This started as tablets and ended up as weekly injections. This was along with my other anti-inflammatory medication, painkillers and benzodiazepines. I was so physically sick. I lost friends, no one understood. Eventually the pain became less but I felt just as ill, just a different type of ill. I lived like this for four years. This began me on one of my research journeys – is there a link? Autoimmune disorder and Autism. However, taking the medication came with stress of its own. What effects is toxic medication having on my body? It couldn’t possibly be good. The illness would peak and trough. I kept a diary, the higher the stress levels the more ill I felt. I attended for an out patients appointment in September 2016. During this time I was having an extremely severe flare. My son had started a new school and was struggling to settle and the service I worked for in the NHS was under review. My blood results indicated the inflammation in my body was high and my kidney functioning was poor. I panicked; resulting in a vicious circle, more stress equalled feeling more unwell. Whilst at the physio with my daughter for something unrelated I saw a sign for Trigger Point Pilates. It stated that this could help with chronic pain conditions. The results were good; I could move more freely, the inflammation in my body became less, resulting in a reduction in medication. The trigger point had made me feel good the medication reduced so I went back to the gym – big mistake, another flare, back on the medication. Then someone recommended yoga. I wasn’t sure about this. After all previously I had been a runner, I did mudstacles. Besides my anxiety was so high I could never go to a class. I could barely move let alone bend! I booked a 1-1. Worth a go. The teacher was lovely, welcoming. I left still unsure but something made me go back, I took my daughter as well, a dancer who really enjoyed it. I did feel better, less stressed but my joints still hurt and I still had continuous iritis. The results did not seem to be the same as the Trigger Point Pilates. Then the teacher stated she was going to be away for a few weeks but told me about a new hot yoga studio that was going to be opening. I thought she was joking. Go to a class – NO A hot one! – NO Go alone – NO I explained that Lupus and heat don’t mix, that it would make me feel very unwell and probably make me swell even more. Therefore it would most definitely be counterproductive to what I wanted to achieve. Then my friend called. Did I want to go to the opening weekend of the hot yoga studio in Penwortham. All classes were free. Errrrrrrrrrrrm! Tentatively and against my better judgement I agreed. Thinking I would never go again. I went. I survived. I WAS SWELLING FREE! I COULD MOVE! This feeling of movement lasted for about 2 days, I had energy, for the first time in years I felt good. I went again, and again, and again each time my body reacting and feeling more able to move more freely. I went to see the Dr. Again my bloods done and this time everything was in normal range for the first time in years. I have continued to go since it opened. I aim to go 3-4 times a week. I am currently medication free, for the first time in nearly 5 years. I daren’t say I am well. I have a chronic illness after all. I don’t know why it works after all the heat should make me worse. After some research I believe it’s a combination of things. The heat makes me sweat, therefore eliminating toxins especially the ones poisoning my internal organs. The movement reduces the swelling making my joints able to move more freely, the time I take for myself allows me to focus therefore reducing my stress, learning to control my breathing again helping to reduce my stress. Stress as previously discussed is the biggest cause of SLE flare. For me the benefits of Hot Yoga have been a winning combination. I am no accomplished yogi, probably never will be, however 18 months ago I could hardly walk, now I can stand on my head ( well kinda – badly) Maybe seeing the world from upside down gave me a new perspective.

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