Star:
1. any heavenly body.
2. a person's destiny, temperament, etc.
www.dictionary.com

Whether you’re reading this because you’re gluten intolerant, suffer from PVFS or CFS, are starting to grow your own veggies, embracing natural and/or alternative remedies, or just want to enjoy the journey with us, please remember I’m not a medical expert, nor am I here to debate global warming. Being diagnosed with a life-changing illness, looking for answers or changing the way one lives can all be overwhelming events, so I hope that by sharing the triumphs and tragedies, you too will benefit in some way from our journey.

I hope you enjoy the journey and if you leave this blog having learnt only one new recipe or started to think about finding your star, then this blog’s purpose has been served.

My two favourite sayings:
Pondering the choices we make at the crossroads is like revision in the school of life. Regretting the mistakes or taking for granted the successes means we have learnt nought.
An attentive student will gain wisdom from the mistakes and joy from the successes. Cartillyer – 2008

'Strength does not come from physical capacity. It comes from an indomitable will.' Mohandas Gandhi

Saturday, May 19, 2012

Our PVFS Three-week Plan


The thought of having post-viral fatigue syndrome (PVFS) for six months depressed me. I already felt useless as a wife and mother and I struggled to continue with my online studies. I had heard of chronic fatigue syndrome (CFS), so when I started researching PVFS I soon discovered that PVFS, CFS, myalgic encephalomyelitis (ME) and Fibromyalgia shared similar symptoms. The thing that scared me the most was how long some people had suffered from debilitating fatigue. 

Just like in the early days, each time I felt a little better, I’d try to do a bit more. A bit more wasn’t much – going to the shops to buy bread and milk, or hang a load of washing on the line instead of putting it in the dryer. As soon as I did a little bit more, I’d crash. The fatigue would wrap itself around me like chainmail; the nausea and headaches returned; and the aches would spread through my arms and legs.

Not only could I not go on like this, but nor could my family. We were eating take-away dinner nearly every night. Mr T looked haggard from constantly worrying about me, while continuing to work in a highly stressful, full-time job in advertising. He always has been and always will be a worrier. Even after we finally worked out what was causing my health problems, he still shoots me a worried look if I sneeze more than three times in a row.

So we created a three-week plan that allowed us to reorganise our lives.

The next time I visited the doctor I explained our plan and asked for a medical certificate to cover Mr T for the three weeks off work.

Week 1: Mr T would take care of the house and kids while I got some much-needed rest – something I’ve not been able to do since I first fell ill.

Week 2: We would test my body to see what made me crash and how much I could do before crashing. We soon worked out that I could cope with 20 minutes walking around a shop, but 40 minutes was too much – more than enough to make me crash and leave me ill for two days.

Week 3: Knowing what my limitations were we rearranged my daily routine so that our family could function and I would feel in control of my life and my body. This was important, not just for the well-being of our children and Mr T’s sanity, but also for my mental well-being. I was becoming very depressed – I felt as if my body and I were always at odds and I had no control over my own body.

Although we hadn’t yet put it into action, our three-week plan gave me confidence and filled me with hope that I could be normal again. I felt sure that I could beat the PVFS in no time, but my doctor tore through my confidence like a wrecking ball. She told me that the only way I was going to make any improvements in three weeks was if I used the time to stop breastfeeding Miss Flora.

I knew that breastfeeding added to my fatigue, but I wasn’t about to make a very clingy baby, who suffered milk protein and wheat intolerances, and whose only source of calcium was my breastmilk, give up the only thing that settled her. Mr T and I shuddered at the nightmare we would endure if we forced Miss Flora to give up the breast. She was not ready to give it up and I wasn’t prepared to put her through that.

I left the doctor’s surgery without a medical certificate and feeling depressed. All I could think of was how ripped off Mr T and the kids were. They had a wife and mother who couldn’t perform basic everyday tasks without spending the following few days fatigued and useless.

I like to believe that if one door closes, another opens, and it did in several different ways after that visit to the doctor.

To be continued next week.

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