FIBROMYALGIA – YOU ARE NOT ALONE

I am just entering my 11^th year with Fibromyalgia.  I feel incredibly sad about all the time I’ve lost over these past 10 years.  I wonder if I will ever get completely well and be able to live my life as I used to.  I am definitely better than I was when I first got it, but progress has been annoyingly slow.

One of my biggest disappointments has been that just when I finished my career in real estate and finally have the time to do the things, I’ve always dreamed of doing, I can’t.  I have had to learn to take things at a much slower pace.   It has certainly taken me much longer to achieve my goals – 10 years to write my Memoir “A Spanish Love Affair”and the way things are going I think I’ll take another 10 years to write the sequel.  ‘Fibro fog’, one of the symptoms of fibromyalgia, only allows me to be able to concentrate for 3 hours a day.  With an incredible amount of planning, organisation and the support of my husband Markus, I fulfilled another long-held dream.  In 2015, I walked the Camino de la Plata in Spain.

Fibromyalgia is not a life-threatening disease, but it is certainly life-altering.  It has turned my life upside down. I have had to completely change my way of life in order to manage it.  Markus, my husband has also had his life turned upside down too. It has caused difficulties within our relationship as he tends to be overprotective and tries to curb my activities, especially when I want to let my hair down every now and then.   He is well aware of the aftermath, but I have to live!

I have always been an outgoing people-person but I have had to change completely and limit my social life dramatically.  These days, I rarely go out at night and have very few catch-ups with friends as I find social interaction exhausting.  We also don’t have people staying or over for dinner as we used to. I have had to give up my singing lessons, day walks and can only attend my Spanish and French speaking groups for half the time.

My senses are easily overloaded.  Loud noise, artificial lighting, strong smells and tastes affect me. I also have food intolerances, itches all over my body, muscle aches, am always cold especially my feet, plus I have an increased sensitivity to pain. When I go to the dentists I have laughing gas and a needle.   I have to avoid supermarkets and malls, noisy establishments, concerts and large groups of people.  If I can keep to this rather boring routine, I can keep my symptoms at a manageable level and I don’t suffer from post exertion malaise which feels akin to an extremely bad hangover.

What I’ve found works best is “pacing” my energy and activity levels.  This has been exceedingly difficult for me as a former professional tennis player. I’ve always had loads of energy.  However, these days, I find I can expend all my energy quite quickly and then am essentially done for the day.  Pacing involves planning and helps conserve my energy so tasks can be done through the day by taking rests between activities.  I also have learned to listen to my body and obey its commands instead of overriding them and pushing myself to the limit.  Sticking to a routine is also essential. Although in my mind I would like to run wild all over the place, my body likes regular habits. Fortunately, I am married to a Swiss who lives by the clock.

Diagnosis of fibromyalgia is difficult.  It takes 5 years for most people as there are a lot of other diseases with the same symptoms.  There are no blood tests or scans that can test for it either. Usually, a diagnosis is arrived at by eliminating all other possibilities as happened in my case. There is no treatment for it either.  I’ve tried all kinds of remedies without success –  Chinese herbs for 12 months with no success at all and they tasted terrible to boot, meditation and tapping – ongoing with a small amount of success,  38 sessions of cognitive behavioural therapy – the jury is still out,  exercise and diet – ongoing, and as a last ditch attempt – supplements.  Unfortunately, the side effects of the supplements were every bit as bad if not worse that the symptoms of fibromyalgia.

Sadly, I have lost a few friends since I’ve had fibromyalgia. People find it a hard disease to understand.  They think it’s all above the eyebrows.  However, trust me, it isn’t and has been recognised by the WHO since 1992.  I also don’t like disclosing that I have fibromyalgia because when you meet me, you’ll see that I look the picture of health. And so I should.  I live like an Olympic athlete.  I eat a very healthy diet, live a boringly regular lifestyle, have a rest in the afternoon and go to bed early.  Some people tell me that they are tired too which isn’t surprising.  Life can be very busy and stressful these days.  However, the tiredness experienced by people with fibromyalgia is a bone-weary exhaustion that completely drains your body of energy – physically and mentally.

When I was researching on the internet to see if there were any new remedies/treatments available, I was surprised to find just how many people have fibromyalgia. There are 1,000,000 people in Australia who suffer with it.  That’s 4% of the population – more women than men. You probably know someone who has it but they may not disclose it.  As I mentionioned, I don’t very often.  It is a disease that people tend to keep secret.

Prior to 2010, I’d always enjoyed excellent health although in retrospect I frequently pushed myself way over the limit.   I’ve always eaten a healthy diet, exercised regularly and in fact didn’t even have as many colds as my work mates.

This all changed when we were in Cunnamulla on a camping trip around Australia. I’d been feeling unwell for a couple of weeks when I noticed blood in my urine. It turned out to be a kidney infection.  It took 7 months and a lot of antibiotics to finally get rid of it.  But that wasn’t the end of it.  I still felt unwell and had to sleep twice during the day.  As we went from town to town, I had numerous tests with doctors of every nationality who were unable to come up with a diagnosis.

Halfway through the trip my Mother, who I was very close to,  became very ill and died. I flew to Sydney to be with her during the last week of her life and then as her sole executor finalised her affairs and got her home ready to go on the market.  This involved a huge physical effort and a lot of stress.  I came down with a severe attack of bronchitis halfway through but kept pushing myself to finish the job.

As we continued our trip, I had more tests.  Still no diagnosis.

I was only diagnosed with Fibromyalgia a couple of years ago.

WHAT CAUSES FIBROMYALGIA?

There are many things which may lead to a person getting fibromyalgia.  Although the cause is unknown at this stage, the risk factors include a traumatic experience or injury, rheumatoid arthritis, emotional stress or depression, other autoimmune disorders such as lupus and genetic factors. It can be the result of the body becoming extra sensitive to pain due to an overactive pain system.

Or as in my case an illness such as a virus or following an illness or infection.  I was sexually abused by my tennis coach when I was 11 which is believed to be another possible cause.

I also have the Alpha-gal syndrome (Mammalian meat allergy) from a tick bite and can’t eat red meat, pork or dairy.  A lot of people who have this Alpha-gal syndrome have reported various symptoms of fibromyalgia.

I consider myself very fortunate that I don’t have fibromyalgia as badly as some people who have to spend days in bed.  I’m still able to take my morning walks along the beach or around the lake, which I’m sure stops me getting depressed.  I’m also very lucky that I have interests I am passionate about which I can enjoy quietly from home.   Fibromyalgia can be very isolating.  I am fortunate to live in this era of technology and can keep in touch with friends via Facebook, email and sms’s.

The stress of coping with fibromyalgia can lead many people to anxiety and depression.  I feel extremely lucky that I don’t suffer from either of these debilitating conditions.  The good news is Fibromyalgia has made me focus on what is important to me in my life.  Every day I ask myself the question “What is the most important thing to do today?” and do it.

I am also blessed to have my husband Markus who is very tidy around the house and does the shopping and cooking not to mention that we can afford to have a cleaner every fortnight.  If I had to do those things, I wouldn’t have the energy to do anything else which would make my life miserable.

I’m doing everything I can to get better and it is very frustrating when I get a relapse instead of an improvement.  The worst thing is that some people never recover from fibromyalgia.  I am an optimist and hold out hope that I will be one of the lucky ones.

So please forgive me if I can’t come to an event you’ve invited me to or don’t stay long if I do.