Fibro

Five Ways I Cope with Fibromyalgia: Aka How to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. But what happens if no matter what you do, you are exhausted and sore? There’s no escaping it, you have to do the work. Here’s the five ways I use to cope with my Fibromyalgia and chronic fatigue:

1.       Healthy eating

From; http://systemaxonline.com/clipart/original2.htm
From; http://systemaxonline.com/clipart/original2.htm

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. If you’re looking for more pointers try this Health Eating Plan for the Rest of your Life. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair up last year, my food diary became a love song to carbohydrates. I subconsciously craved fuel that my body could turn into energy; unfortunately, all those carbohydrates created the opposite effect. My already exhausted system was battling its way through the simple and complex carbohydrates I was throwing at it every few hours – it had no time to create energy. It took a few days of concentrated effort, but once I replaced a few of these servings with other foods, I began to feel the effects.

2.       Exercise

Unless your doctor forbids it due to a medical condition, you should be exercising. A person with Fibromyalgia will work at a lower intensity and for a shorter period, but they should still exercise.

The amount of energy I have fluctuates, depending on many things, but I always go for my walk with my dog. Sometimes it is only around a 15-minute block, other times I will go for a course with a decent hill or will walk for a little longer. I have found 25-30 minutes to be ideal for me. I am always treading the fine line between proper muscle exhaustion and pain. This can be hard to monitor with constantly changing goalposts like fatigue and pain levels, but after two years, I have worked up to my current level.

Pilates is my favourite form of resistance exercise. I have done it faithfully for about ten years. Sometimes I operate at a beginner level and other times I can advance the exercises. When I was starting again after a bout of extreme pain, my physiotherapist created a 20-minute programme for me to follow. With my experience, I was able to advance the exercises as my energy levels allowed.

As my pregnancy has advanced, I have had to drop most of my Pilates routine and have begun to favour yoga. I have found it more important than ever to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

3.       A compassionate, knowledgeable physical practitioner

My physiotherapist is a valuable component of my healthy life. Someone you trust, who knows about Fibromyalgia and can bring about lasting changes with their treatments is vital to coping with long-term pain and fatigue. Someone who can come alongside you and take the burden of your body, even if only for half an hour is great for physical and emotional health.

My physiotherapist is the only person I can speak candidly to about what I have been coping with for the last 7-14 days (depending on how long I can stretch out the periods between treatment). After trying many of the different types of therapies, I have found acupuncture to be (one of) the least invasive and longest-lasting treatment.

4.       Sleep and rest

From: http://www.itworksforbobbi.com/2011/02/cathing-some-zzzs-photoshop-brush.html
From: http://www.itworksforbobbi.com/2011/02/cathing-some-zzzs-photoshop-brush.html

Sleep is my hardest battle. A full night’s sleep is the best way to cope with life. I try to go to bed around the same time every night and have a set routine that involves getting ready and reading before I switch off the light. I also try to get up around the same time every day. This helps, but I will not always sleep through the night, I will not always fall asleep straight away and I will often wake up at 4am (or every hour or two) with an incredibly stiff and sore neck.

To counteract these things I adjust my daily schedule as necessary and, when I am being good, I will lie down at some stage during the day to read. Yoga stretches and meditation are things I do regularly and these help with sore muscles and fatigue.

5.       A plan for the “hard” days

These are inevitable. Everybody gets sick from time to time. A person with Fibromyalgia will have some harder days. I have found a written list with suggestions for what to do on one of these days to be useful for pulling me out of the downward spiral of panic that accompanies intense pain.

Things like:

  • Specific stretches for my neck (tightness in my neck often causes headaches, nausea, dizziness and extreme fatigue)
  • Things I can do in descending order of ability (a gentle walk, gentle stretches, watch a DVD, read, lie down with an audio book on, lie down and do nothing else)
  • A reminder of the pain relief options I have at my disposal (wheat pack, icepack, heat cream, Ibuprofen, prescribed pain killers) – you would be surprised at how often I forget these things exist in the grips of serious pain.

P1000247All of these ways for coping should be underpinned by hope. Hope that your “hard” days will occur less often. And hope that you will be able to compile a life that is heading towards wellness, rather than just away from sickness.

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Fancy, Fibro

What Fibromyalgia Taught Me: My Journey so Far

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A funny set of learning from a journey filled with pain and fatigue, but these are things I’ve gradually learnt living with a chronic illness.

My story of happiness and wellness didn’t begin until a couple of years ago. Prior to that, I coped, but only barely.

The pain began when I was a young teenager and grew over a period of around 10 years. By 17, when I was at university my shoulders would ache and burn so much at the end of the day that I usually ended them in tears.

No one knew why I had this pain. Some of the doctors intimated that they thought I was making it up.

I was struggling through university, in my final year, when I was hit with an extremely bad bug. Profound fatigue and flu-like symptoms descended upon me like a ton of bricks. There are 9am tutorials from which I can only recall my near inability to keep my eyes open. After a few weeks, I saw a doctor and they gave me antibiotics. It took a further few weeks for the symptoms to recede but the fatigue had made a permanent home.

Doubly burdened, I struggled through the remainder of university, graduated and entered the workforce.

I have since realised that my inability to do and care about a job for long is related to my illness. I need a lot of passion to drive me through the fog, pain and fatigue to complete my work.

After four years, I was barely coping, feeling just a step away from fainting at every moment. I was sleeping terribly and waking unrefreshed. With nausea and levels of pain at 6/10 by 10am. By 3pm pain levels rose to 8/10, the caffeine needed to keep me from falling flat on the desk caused further nausea; the jaw and temples felt as though someone has a wrench and was turning them constantly tighter. Minutes crept by until 5pm, cue an hour-long bus ride on which to keep from vomiting, falling asleep or crying (or all of the above). The evening was a blur of lethargy, waiting until bedtime.

That was my life. Yet, I managed to look normal (albeit a little paler), complete my work and occasionally force myself to socialise.

After many years of struggling and of tests and regular blood tests revealing nothing, the doctor was able to check the 18 tender points and confirm that I had fibromyalgia. That was all that they did. There was no medicine, no advice, and no referrals. There weren’t many books or websites yet either.

Coop is gorgeousThe turning point came when my parents invited me to move to Auckland with them. I was able to put the changes into place that I’d been dreaming of, starting with slightly reduced work hours. Working 3/4 time, in a warm climate helped immensely. So did meeting the love of my life – a ruby Cavalier King Charles Spaniel named Coop!

In the first year in Auckland, I didn’t do much more than recover. I worked until 2.30 each day, utilising my skills to support an organisation that worked with vulnerable families. I rested in the afternoons and gradually increased my evening walks with Coop.

The second year was more eventful. I began a writing course (I’d always wanted to do one) and I found an excellent, caring, knowledgeable physiotherapist who introduced me to acupuncture – the only treatment that isn’t akin to torture, and the effects last. Perhaps most importantly, she was the first person ever to understand the extent of what I had been dealing with.

This year, the most exciting things have happened. I started a blog and my own business – these have enabled me to do what I am passionate about. Also, I met a man who not only loves me as I am (for all my quirks) but also wants to understand my fibromyalgia, who wants to help me with this burden. The enormity of this cannot be appropriately articulated.

Melissa Gershwyn Aug 13

Some of the things I’ve found that help are:

  • Working 3/4 time
  • Eating healthily
  • Yoga, Pilates and stretching
  • Walking my dog daily (for the exercise, the time out and the pleasure of being outside)
  • Resting
  • Seeing my physiotherapist every couple of weeks
  • and following my passions

With the ability to look back, I’ve become very protective of my new life. I hardly ever lose words anymore, my memory is improving and so is my spacial awareness. The nausea is far less frequent and headaches only tend to bother me every couple of weeks – and they don’t drive me to bed so often. My neck still causes me trouble, but the extreme tightness, dizziness, nausea and faintness is much rarer.

Most importantly, I am living life, not just coping.

I have a larger capacity for empathy. I have been forced to work only enough to live, in a job I am passionate about with no stress, and I love it. Seeing friends bust their guts working 40-50 hours per week in jobs they don’t love makes me thankful that I have learnt that I don’t need the money or the prestige. I’ve gladly skipped the year living in London, buying fancy cars and clothes – because my dreams lie elsewhere.

I hope I make a difference in the lives of those that intersect with mine. I hope I always know what’s important.