This injury had a devastating knock-on effect and I was quickly diagnosed with the autoimmune disease erosive lichen planus (LP) which in my case causes ulceration and lesions of the skin and mucous membrane. At about the same time the symptoms of fibromyalgia began and so did my battle to get back to some kind of normal life.
What happened next might sound familiar to many of you: reluctantly I had to give up a job I loved, because it was just too difficult to manage. Because of the pain, I wasn’t able to drive far or to sit at a PC for long periods and I was just no longer able to think clearly with the brain fog. I confess that getting out of bed was sometimes too much of an effort and I’d have what I now call ‘duvet days’ and yes, I still allow myself the occasional ‘duvet day’ when I’m having a particularly bad flare up – it’s part of effective self-management for me. Add to this, the restricted diet, the enormous weight gain caused by medication which made me feel old beyond my years, fat and unattractive (I still battle with this self-esteem issue even now). Quite honestly I didn’t see the point in living, if this was all that life had to offer me.
Because I have always been work focussed, when I gave up my job, I felt that I had completely lost my identity and my confidence hit rock bottom. So, to keep myself occupied, I set up a charity to support other people living with lichen planus (UK Lichen Planus). Many of those members also had other health issues and I found that I was informally mentoring them to take back control of their lives, to re-invent themselves and to be experts with their own unique experiences of the health issues affecting them. The positive feedback from clients and the realisation that I actually really enjoyed the work, encouraged me to make the decision to formally train as a professional coach in 2008.
It took me a year to qualify because of course, I had to gently pace myself. I negotiated around my mobility needs and was able to attend the training days in half day sessions. This helped a lot, not only in managing the pain and fatigue, but the brain fog, which makes retaining information difficult. I was very proud to graduate with distinction.
I had found something to make life worth living again, it had taken a long time to get there, but I had got my sense of purpose back.
Long term health issues can turn your world completely upside down and bring with it feelings of despair, inadequacy, isolation and frustration – it can feel a bit like being at the bottom of a black hole – but not knowing how best to get out, although you know you desperately want to! I now work with people who are in a similar situation to the one I found myself in a few years ago so I can completely empathise.
Some of the areas often affected by long term health issues such as back pain, vulvodynia, fibromyalgia, ME, MS, lupus etc are: poor sleep, a lack of self esteem and confidence (this is particularly relevant because it’s so easy to feel unattractive when you have to cope with weight gain, medication, pain and fatigue on a daily basis) and of course, all of this can have a devastating effect on relationships both at home and at work.
It’s good to get some balance back into life so that you can better manage the ‘bad’ days. It’s also worth working on some strategies to manage your health issues holistically, based on what looks and feels right for you and work positively with your health care professionals to find the optimum treatment plan for you.
In the workplace, we want to achieve all that we are capable of in spite of our health issues and it’s very important to have the confidence to ask for your needs to be met. Whether that is to ask for flexible hours, special cushioning or seating, to apply for a Blue Badge, or even to help you come to terms with using an aid for walking. Some days you will not be able to manage what you feel you ‘should’ be doing, and you might need to find ways to get around the problem of explaining to work colleagues, family and friends, that you may occasionally have to let them down.
We are all unique and we all have different ways of managing our pain. Having a positive outlook will help you to plan ways of overcoming the many obstacles you face day in day out. Plan for a different kind of ‘normal living’ which takes into account your health issues, so that you are able to live a life which has real meaning and joy; at work, at play and at home. What every person with a long term health issues does possess is the capability to re-build a life which is meaningful and worthwhile.
Bridie Nelson, problem solver, mentor, befriender and coach.
For a FREE copy of her e-book “A-Z of Feeling Great, Every Day of the Week” or to book a FREE introductory session, please visit: http://www.bridienelson.com.
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