How I found healing from Lupus and Fibromyalgia
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Where it All Started
I first got sick towards the end of 1999 shortly after the birth of my first child. I had repeated flare ups of arthritis, kidney inflammation, pleuresy, skin rashes and extreme fatigue. I was a reserved, self sufficient person, and I thought that my will alone was enough to make it go away, and didn't really share what was going on with anyone. I was happy and enjoying my life with my new child and would not allow these recurring spells of illness to impose on that life.
The doctors would not run tests or admit that there was anything really wrong with me, and kept trying to fob it off as post natal depression, when I was in fact not depressed in spite of having every reason to be. I suffered with clinical depression and beat it early in life, and know what it's like and how debilitating it can be. But this was not depression.
I was too stubborn to ask for help or admit how ill I was. To be honest, I don't think I realised how ill I was. Inevitably, I ended up in hospital, barely conscious. I had no idea until afterwards that my family were so worried they were preparing for the worse and actually feared I was dying. I never thought about what they may have been going through, and never let them in to help.
In the end, I had to admit that I couldn't go on like I was. I was getting sicker and sicker. Even then I may not have made the decisions I did if I had not had my child to think of, but I was now so ill that without the hands on support of my family, who at that time lived 200 miles away, I knew I would have to arrange respite foster care for him when I was just too ill to function.
So, in spite of being 28 and with a life and a child of my own, I returned to my family and the house where I grew up in the Cornish countryside to hopefully find some healing.
The Turning Point
I was finally taken seriously by a new set of doctors there that recognised straight away that I had the symptoms of Lupus, or SLE, an auto immune condition often first triggered by pregnancy and childbirth. I was diagnosed with both SLE and Fibromyalgia, although I never suffered the extreme pain that many Fibro sufferers do. Extreme fatigue, muscle weakness and "brain fog" were always the worst, most frustrating and most debilitating of my symptoms. At this point even walking 100 yards on a flat path was an achievement for me.
I think people really struggle to understand what the word "fatigue" means unless they've experienced a condition like CFS, Fibromyalgia, Lupus or MS. It is like a black swamp that sucks you in and robs your life. You can sleep 18 hours a day and feel like you've never slept at all. You don't fall asleep anymore, you get dragged into it because the ravenous monster demands it and you just can't do anything else, and you wake up feeling even worse.
Slowly, I started on the first stage of crawling out of that pit. I rested, I was supported by my family, I ate well and lived a quiet, almost stationary life.
Still very few people knew I was ill, or why I had left my old life and moved. I was a very private person and just not the type to share and express my feelings. I also irrationally felt that I would somehow be rejected or be repulsive to people, like there was something shameful about being so physically weakened.
My kidneys and lungs at last calmed down and allowed my body to start healing itself, but I was still extremely fatigued and sleeping during the day as well as 9 or 10 hours at night. But at least the extreme flares had settled down.
I used homeopathy, which I feel certainly helped my recovery. I also found chiropractic treatment invaluable for easing and freeing my stiff back and joints.
I also started to connect with others in a way I had rarely done before, especially to those who were on a similar path, and knowing I was not alone as I walked gave me so much strength, and knowing that they had found their own healing gave me so much joy.
After about 3 years I felt strong enough to contemplate moving again and start to reclaim my independent adult life. I took the decision to relocate to my dream home, back to my roots where my family originally came from, but still close enough to visit them regularly in Cornwall.
I had come a long way but was still struggling with fatigue, and still needing to sleep during the day. And I still had to come to terms with and let go of a lot of my cherished hopes and ambitions, like completing my degree and pursuing the career I had wanted.
But when you feel those doors closing against you, it is amazing how new doors open to a different life and a contentment you never dreamed possible. My son has complex special needs, and through the joy and the battles of bringing him up, and the wonderful people I have met through that, I have found my true work and voice in supporting and advocating for families in the same position, as they seek access to education and services, and justice when they are let down by the system.
Then in 2006 I seemed to cross a barrier, like waking up after a long, long night's sleep, and felt freer, happier and more energised than I had done in over 6 years. I don't think you fully realise how sick you have been until it lifts, and you remember what it was like to have a body that does as it's asked, and can actually get through each day awake and look forward to a normal bedtime.
When you are in pain, each breath without pain is like a rebirth, a moment of perfect euphoria. When you have been chronically fatigued, each day without brain fog when your body will work for you is like the first day of creation in it's hope and it's joy. When you live with a condition you know intellectually could resurface and clobber you at any time, even if instinctively you know it won't because you understand your body and mind and the processes of true healing, the gift that can leave you is the ability to live each day like it could be your last. And then the richness of your life cannot be put into words.
How I Got Better
To summarise through the waffle, the main things I feel healed me were:
* Fresh air, a good well balanced diet and lots of water
* A "low toxic" lifestyle, including no drinking, no smoking, no unecessary drugs, and keeping household chemicals to a bare minimum
* Managing stress
* Managing UV exposure (SLE specific)
* Learning to reach out to others walking the same path
* Learning to express myself, my feelings and speak my truth
.....and a lot of hope!
I believe there is a lot in the theory that auto immune conditions like SLE, and related chronic conditions like CFS and Fibro, are more common in people who do not express themselves and who bottle up their feelings and thoughts. The path I have been on has bought me closer to those that I love, has taught me patience and humility, and broken down the barriers of reserve and self control that had caused me to hide my emotions and hold back my words through so much of my life.
The frustration and the helplessness of having a body that will not work is so similar to the frustration of being misunderstood, misjudged or disempowered by others. Ultimately, the only answer to this is to take the responsibility to find your own voice and express yourself in a way that leaves no room for misunderstanding. It is not enough to know that words unsaid, justice unrealised or love unspoken does the greatest harm and causes the most profound of regrets. It is the need to realise with every atom of your being until all fear and constriction lifts, all vanity and reserve melts to nothing, and the words come pouring out like a waterfall, with honesty and openness, and without disguise.
It is a strength to lay our hearts open to those we have loved, and to ask forgiveness from those we have hurt, however unintentionally, and to find peace and extend blessing when we have had to say goodbye and move on.
This type of closure can heal all wounds, emotional and physical, and through this healing, lead to the greatest contentment and joy.
This recovery story is in categories: Fibromyalgia, Lupus (SLE)