Read me and #BecomeFibroAware

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Don’t you find, there’s always someone who starts a conversation with…

‘You know, I think I had fibromyalgia years ago.  I was sick for months with pain as a child……but now I’m fine’.  

I get exasperated when I hear someone say something like this; I want to say to them,

So, you think you know all about fibromyalgia?……

But I just remain calm and agree with them 

O, yes you are probably right’, 

thinking to myself, why did I agree when I know there completely wrong? I now realise they’re not as clever as they think they are!

Fibromyalgia is an illness with NO CURE, it’s not possible that you had it ‘years ago and are now cured’.  

The best doctors in the world have not found a cure for fibromyalgia yet. Look it up on google as, ‘fibromyalgia cure’, it will say there’s no cure.

For anyone who is confused and does not know anything about fibromyalgia,

I will run through the main symptoms.

The main symptoms are:

Pain throughout the whole body 

Joints and muscles feel stiff

Quality of sleep can be poor

Feeling tired and fatigued 

Irritable bowel syndrome (IBS)

Extreme Sensitivity 

Cognitive problems, feeling confused, or dazed, sometimes called Fibro fog

Headaches

Depression 

Anxiety 

Painful periods in women 

The symptoms can vary from person to person.

Symptoms can get better or worse from time to time.

Factors that influence this are:

  • the amount of stress you are experiencing 
  • how much daily exercise you have
  • and changes in climate and temperature 

Further information is available on the NHS website.              

If you think you may be suffering from fibromyalgia, consult your doctor or health professional.

Going back to the fact there’s no cure.

I’ve lived with fibromyalgia for 14 years and found some times are really tough.

I have been able to boost my general health through diet, exercise  and meditation  .

The positives are my symptoms are still there, but have improved greatly since I was first diagnosed.

If you would like to read more about how I achieved this have a look at my Fibromyalgia Self Help or contact me via the link below.

I appear normal but…

 

I have an illness that’s not visible.

Although you cannot see it

For me #fibromyalgia is real.

It causes me #chronic pain and #fatigue.

The pain can be debilitating and constant.

Some days it can get better or worse.

It’s altered my life choices

I’m not asking for sympathy

Just empathy

This week it’s #fibromyalgia awareness week

If you’ve never heard of fibromyalgia or know very little about it. Please take a few minutes to read this.

What is fibromyalgia?

Briefly, it affects the skeletal muscles throughout the body, causing varying degrees of pain.

The pain ranges in severity from day to day and it is affected by temperature,

stress

and the amount of physical activity carried out.

Fibromyalgia sufferers commonly experience a range of different types of pain.

The pain can range from a sharp stabbing pain,

an ache

and a burning pain.

Other symptoms that can be experienced are

fatigue,

poor sleep quality,

stiffness,

IBS,

headaches,

cognitive problems

“Fibro fog”,

depression,

dizziness,

anxiety

and painful periods.

Have a look at the NHS description of fibromyalgia for more in depth information about the condition.

Invisible Illness and Fibromyalgia 

One huge difficulty of living with fibromyalgia is it’s an invisible illness; others assume you are well because there is no physical evidence of being ill.

In my personal struggle with fibromyalgia this single fact has caused me the most stress over the 14 years I have had it.

You may ask, if you know someone or meet someone with fibromyalgia. What should I do?  Showing them compassion and learn about their symptoms can make a difference. Just taking the time to talk about it with them will help.

If you have just been diagnosed and are trying to find links to support groups and the online community. Have a look at the organisations below and also Facebook groups.

UK Fibromyalgia is a brilliant site that covers a wide range of information about fibromyalgia.

Also

Fibromyalgia Association  is a registered charity that provides information and help to sufferers.

 

 

Hot summer heat…What does it mean for our future?

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Our carbon footprint and the damage we are causing to the environment has been publicised widely this year.

This summer has been difficult for me to live through with wildly fluctuating temperatures, here in the UK. (If you don’t follow me, I have fibromyalgia.)

It’s been so hot in the UK this week; temperatures have been up to 32C. I have no air conditioning. Back in July it reached 37C.

Me and my computer 💻  are completely frazzled.  I’ve decided to have a break and try again next week.

In the meantime….

I have some questions for you to think about.

Why is it hotter in the UK this year than I can remember in my lifetime?

Why have all records for heat been broken this year in Paris, Spain, Portugal and the Netherlands?

I don’t think you have to look far to reach a conclusion to these questions:

I found a comprehensive answer on the Greenpeace website.

“It’s the use of fossil fuels – coal, oil and gas– that’s the main problem. Burning them has released carbon dioxide and other greenhouse gases which were locked deep within the Earth. Because of this, the amount of carbon dioxide in our atmosphere has rocketed. It’s now at levels not seen in millions of years, before humans even existed. Carbon dioxide traps heat from the sun and as a result our planet is now warming fast. 

The UK’s top ten warmest years have occurred since 2002, and this trend is set to continue.”

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Climate change is happening now 

It’s a crisis facing the whole world

For us and future generations

We can do something now

By making changes to how we live

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What can we do to help reduce our carbon emissions?

Have a look at this UN Carbon Footprint calculator.

What have I done?

I drive a hybrid car.

I’ve changed my energy tariff for a green energy deal.

I’ve stopped using plastic bottles for my water drinks and use a recyclable bottle.

I leave you with this question to think about….

What could you do to change your carbon footprint?

For more ideas have a look at the following links:

Friends of the Earth UK

Greenpeace UK

Revisiting Mindfulness

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I’ve neglected my meditation practice recently; getting back into it proved straight away how helpful it is.

If you have never tried mindfulness or meditation join me now and find out how it can help you and perhaps try it out.

In a previous post I mentioned that mindful meditation has been proven to help the symptoms of fibromyalgia and also help to calm a active mind. I was intrigued to explore this in more detail. 

How can mindfulness be described?

In a nutshell, it’s focusing our attention purely on the present moment. Doing this without letting the mind drift back to past memories or thinking about future events. Mindfulness is embracing the present with acceptance, without judgment.

The monkey mind 🐒

There are so many distractions for us to focus our mind on. To illustrate the monkey mind, try this exercise for a couple of minutes.

Focus your mind on your breathing.  Think about where you can feel movement in your chest from your breathing.  Concentrate on this area, for a few minutes. You will notice your thoughts stray, thinking about numerous things other than the breath.

These thoughts are from past or future experiences. The mind is rarely focused on the present. It jumps from one subject to another, like a monkey playing. This practice is called the monkey mind.

Why should I try mindfulness?

Clinical researchers have carried out a number of tests which have shown that mindfulness can improve your overall health and wellbeing. For fibromyalgia sufferers the benefits can be:

  • lower stress levels 
  • lower depression
  • improve the quality of sleep 
  • reduce anxiety 
  • encourage positive thinking
  • alter the way the mind reacts to difficult situations 
  • improve decision making 

How do I start to practice mindfulness?

Start by focusing on your senses when you carry out your everyday routine. By thinking about the feel, touch, smell and the sound of everything you are experiencing. 

If you carry out a task such as washing the dishes, think about the heat of the water, the texture and feel of the plates, the scent of washing up liquid and the sound of water filling up the bowl. 

If you have a regular daily routine build some time into it every day to practice mindfulness.

You could try changing your daily activities. For example if you regularly go for a walk and always walk the same way; try changing the route to one your not as familiar with. Or try a completely new walk. 

By changing your routine to something different or new it will get your mind to focus on a familiar task in a different or new way.

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Thought watching 

If you find while you are concentrating on tasks thoughts interrupt you. Just observe them, try not to be side tracked by them.

Introduce a label for each thought that arises; ‘I’m nervous about a exam result’, label it ‘thought’, or a feeling ‘I feel worried’ label it ‘emotion’; and go back to the task you are carrying out.

This practice will help train the mind to not follow a thought and get sidetracked by it. Just observe thoughts without judgment, acknowledging them, and labelling them. Going back to the task.

Mindfulness meditation

Taking mindfulness a step further incorporating it into daily meditation practice can encourage the mind to work in a regular pattern.

Mindfulness meditation works by silently spending a few minutes every day thinking about one aspect of the body, such as breathing awareness and acknowledging thoughts, when they arise and bringing back attention to the breathing.

Have a look at my page on Meditation for more information about suggestions for meditation practice.

 

A different view of the world, having empathy

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For most of us, our lives are basically pretty boring and mundane.

But what if one day you woke up and everything had totally changed?

Sometimes for a brief split second we have a thought and visualise it becoming reality.

How strange and unusual it feels.

Just for a moment now,

stop 

and take yourself to that thought.

                                 💭  💭  💭  💭  💭  💭

What did I think of?

I imagined I was free of fibromyalgia

and visiting the Great Barrier Reef in Australia.

I’m looking out onto a perfectly blue sea; staying in a floating hotel 🏨overlooking the reef. I’m going snorkelling around the reef; an I was getting an underwater camera 📸ready to take pictures of the coral reef and the fish.🐠🐟

How did I feel ?

Totally free and like I was visiting a giant tropical fish tank. Swimming around the coral reef, the water was warm. The coral looked like a fantasy underwater garden; the different colours changing as I swam past. 🏊‍♀️

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I hope I have been able to illustrate how it feels to be totally free and able to do anything you want.

The opposite is true living with an invisible illness like fibromyalgia. Plans are broken all the time;

constantly letting others down because your illness is so unpredictable.

Just meeting a friend for a meal is fraught with problems.

Planning what type of food you can eat;

Could it trigger my IBS?

Does the restaurant have chairs with padded seats that are comfortable to sit on for about an hour or more?

Could it start my lower back pains if I am forced to sit on a wooden chair?

On the day I planned to go out, I woke up with pain in my head and feeling disoriented, I’m unable to drive. The meal is cancelled.

Now you are thinking;

and perhaps you’re feeling sorry for anyone with an invisible illness.

Having empathy for someone is a better response; rather than sympathy.

Or to explain this in a better way a quote from the novel,

To Kill a Mockingbird by Harper Lee

“You never really understand a person until you consider things from his point of view…until you climb in his skin and walk around in it.”

Just putting yourself in that persons shoes can give some insight into our version of living; our different view of the world we face on a daily basis.

Perhaps now you could repeat the above exercise, but this time, imagining you have fibromyalgia.

I’ll start you off with how my day can start….

You wake up and you’re legs are aching, as you move to get out of bed a muscle in your back twinges in a spasm. Your in intense pain for a moment, luckily the pain softens. You manage to get out without any other area going into spasms. As you start to get dressed your head feels achey. Your chest feels painful as well…

A great way to start the day and I’ve not got to work yet!

On the beach 🏖

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It’s a wonderful feeling walking along a beach; watching the sea touch your toes as you walk.

I enjoy walking all year round winter and summer.  It’s a good way to exercise and keep the weight off.

There’s no better time to start exploring new surroundings on foot during summer.

Being a fibromyalgia sufferer, my joints feel less painful and movement gets easier during the warmer months.

If I can try to increase my exercise by walking a bit further each day in summer. It can help to prepare for when autumn and winter limit my movement. 

I first started walking regularly before I had been diagnosed with fibromyalgia.  I had been suffering with lower back pain, which had got progressively worse.  I had been unable to work and my doctor said I need to go to physio first and suggested walking.

At the time I thought it was really unhelpful advice as I could barely move, let alone walk anywhere!  But after the physio got me mobile, I started with short bursts at first of 5 to 10 minutes, progressing to longer walks.  Now I do a regular walk every day and have not suffered from back pain so much; I also have more energy to do things.

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I look forward to my walk everyday, sometimes twice a day if I’m not too tired later on. I am fortunate that I live near a park and I can vary my daily walks through wooded areas and quiet residential streets.

I usually spend about 25-45 minutes on each walk and vary the terrain. On really cold or wet days when my symptoms are worse, I go for a walk at a local covered shopping centre, which means I still get exercise but I’m not exposed to the elements as much as outside.

If you have started walking recently or plan to begin and have not exercised recently you may want to consult your doctor or health professional beforehand.

If your joints are very stiff it might help to try gentle exercise at your local heated swimming pool first. Exercising in water supports the body and would free up joints. If you are a wheelchair user some pools have special equipment to access the water easily.

Throughout the UK free regular guided walks are provided by  Walking for health  which is funded by the UK People’s Postcode Lottery and Macmillan.  They offer different short walks for beginners which are for 20-30 minutes long. The route you walk over is easy terrain as they are specifically designed for people who are not very active. Some walks are suitable for wheelchair users and people with buggies.

If you are a wheelchair user the UK website Walks with wheelchairsis dedicated to routes for wheelchair users.  All walks have been tested by wheelchair users.

The NHS Walking for health site gives helpful advice for anyone wanting to start walking.