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!

Motivate yourself ? and lose weight….

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If you’re trying to lose weight your probably also trying to find the answer to this question.

It’s even more difficult to do when you’ve got a chronic illness, like fibromyalgia, sapping all your energy and enthusiasm.

I know I lack motivation.

It’s something I’ve been trying to unlock the secret to.

It’s especially true for my diet.

Since my carer went on a low fat diet recently and lost a lot of weight. I’ve also cut back on saturated fat, cheese and cake.

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Now I try to eat low fat alternatives, which is not always easy.

My body wants to eat snacks and other unhealthy food.

I asked my carer how he managed to stay motivated enough to only eat certain foods.

He said he eats enough at meal times to feel full up and only snacks on fruit and healthy alternatives, when he is hungry.

He added.

Once your mind is set on achieving a target weight it’s easier to get motivated to keep working towards it.

Regularly checking your weight and keeping up exercise  which helps to keep the weight down.It’s obviously a formula that’s working for him.

But everyone is different and what works for one person is not necessarily going to help someone else.

You may remember my post about Keeping Positive and Motivated with Fibromyalgia from earlier in the year. I suggested a number of ways to reprogram the mindset, using positive thinking.

I read recently that the opposite is true for some people. Looking at things in a negative way motivates them more. Although I find it difficult to recommend using this technique to motivate, due to the downward spiral of thoughts it can trigger.

I have noticed that it has worked for me in the past. For instance the negative comments of others inspire me to prove them wrong. When someone says,

”You can’t achieve —————”.

”You’re be unable to complete ———“.

I will always prove them wrong and work really hard to achieve that target and surpass it.

Its a bit like us fibro warriors when we pretend to be well and not ill. We’re constantly striving to show we can do things, we want to engage in life and contribute.

To sum up, choosing the best way forward to motivate yourself is something that can be down to trial and error.

A period of experimentation could be helpful to find the way forward. Loosing weight is down to choosing the best motivational techniques for you.

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On reflection from…

black withered tree surounded by body of water
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So, you think you know all about fibromyalgia.

OK, tell me what your understanding of fibromyalgia is…

It’s a chronic illness,

With no cure,

It’s an invisible illness; because the pain or symptoms a sufferer has are not visible.

It predominantly effects women but also some men,

What are the main symptoms?

it’s not a definitive list because fibromyalgia symptoms can be combined with other illnesses which can in some cases magnify the symptoms.

Pain throughout the whole body; the pain can vary in intensity and type.

Joints and muscles feel stiff

Poor quality of sleep

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

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

How does fibromyalgia effect your daily living?

Everything I do from buying groceries, doing household cleaning, ironing clothes and cooking meals.

Using the example of household cleaning; my carer does the hoovering when it involves moving furniture. I can do some, but it varies how much I can do from day to day with fluctuating pain levels.

I wanted to reflect on my previous post partly to think about what has changed and how it can be improved.

I’m pleased that others with chronic illnesses and fibromyalgia liked my other fibromyalgia related posts. Thanks for your likes and comments, which are really encouraging.

I’ve been in situations with others not understanding what fibromyalgia/invisible illness/a chronic illness is and how it effects me.

I started my blog originally to give others some insight into what it’s like living and managing with fibromyalgia.

But, apart from surviving the constantly fluctuating illnesses and pain associated with fibromyalgia.

The main problem for me is,

getting others to understand that having 

fibromyalgia

means I have limitations on what I can do.

It’s not just one thing that’s affected

it’s everything, every day, all the time.

There’s a lot of ground to cover helping others understand what fibromyalgia is, but hopefully after reading my post you will be some way towards it.

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 although 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 since I was first diagnosed. I can now do some hoovering!

Tell me about…Fibro Fog?

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Fibromyalgia produces a number of conditions that are part of living with an invisible illness. 

One of these is cognitive dysfunction or Fibro fog. Due to sufferers feeling confused, experiencing short term loss of memory and mixing up words.

Before I was aware I had fibromyalgia I was often told;

‘Your a scatter brain…’

‘Why do I have to keep repeating this to you…You should be able to remember…’

Usually because I’d had forgotten the time I’m meeting someone or instructions about completing a task.

I used to feel frustrated that others had fantastic memories but I had no ability to retain information.

Now I know why, I’ve been suffering from fibro fog.

It’s true most people at some time in their lives have difficulty recalling things but with fibro fog it can suddenly hit you out of the blue.

At it’s worst I’ve found myself standing in front of someone I know and chatting to them as they look familiar but I cannot remember there name or anything else about them!

That’s really embarrassing!!

Or perhaps even worse than this I’ve forgotten to take tablets I need to help me feel better.

I end up remembering to take them days afterwards and feel annoying with myself for forgetting something so obvious.

What’s causing these symptoms?

Probably the most likely explanation of this is due to poor sleep quality. Added to this fatigue and the daily routine of living with pain all contribute to the severity of Fibro fog.

How can I cope better with these symptoms?

It’s been documented that fibromyalgia restricts the blood flow to the brain. Managing pain levels by practicing some  simple relaxation exercises or meditation and mindfulness can help.

When l was first diagnosed with fibromyalgia I had great difficulty relaxing. Learning some simple relaxation exercises helped me to cope better with the pain, and gradually I’ve found my symptoms have improved. I’ve worked out ways to lower my stress levels and experimented with different techniques for improving the quality of my sleep.

Look at my posts on  meditation , mindfulness , sleep exercise and diet. These all play an important part in contributing to our general health and well-being.

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Other ways to remember important information

Making a list of tasks you must do, perhaps keeping a diary or getting a calendar to make a note of important dates.

The most important of all is to not worry about getting things wrong it’s inevitable that we will forget something important. I think we tend to overcompensate for our short comings. Better to get what we can right and accept what we cannot and move on.

Keeping Active with Fibromyalgia

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Now that Spring is here and we are beginning to have lighter evenings. It’s a good time to consider reviewing your fitness and exercise regime if you have one.

After I was was diagnosed with Fibromyalgia in 2004, I found that exercise helped me a lot as I struggled to find things I could do. When you have Fibromyalgia it is a daunting prospect, keeping fit. Particularly starting out for the first time, with a new exercise.

It’s really important to keep as healthy as possible, as your level of stamina fluctuates so much.

I have made a list of everything that has helped me that you could try.

Walking

I found walking to be the most accessible and best for my circumstances.  Walking can help to boost your energy levels and enjoy nature.

If you suffer from low mood, walking on a regular basis is a good non medical therapy, to help feel more positive.

If you are on a low-income, it’s no problem to try out as there is no sign up charges.

If you are new to walking it is best to start with 5 to 10 minutes at first and gradually increase this as your body gets used to the exercise.

You will need to try out a pattern that suits you.

When you first start you may need to get some comfortable shoes and wrap up well with thermal layers on cold days.

Have a look at my post on walking  for more tips.

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Hydrotherapy

I found gentle exercise in a warm water pool can help. The water supports your body and has less impact on muscles and joints.

Research has shown that lying in warm water helps the body to relax and lowers pain perception.

A therapist that specialises in hydrotherapy or a qualified physiotherapist that has a good understanding of fibromyalgia, can help you to work out some exercises.

Your local sports centre or gym may have these facilities and let you have a couple of trial sessions.

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Pilates

Pilates strengthens the body as a whole, the main aim is to improve core strength. Regular sessions can help to reduce the risk of injury by increasing flexibility.

I  developed my own tailored exercise routine, by trying out different exercises, from visits to a physiotherapy practitioner.

If you go for physio ask the practitioner for advice and help about what exercises are best for you.

I practice these regularly once a day, for about ten minutes in total. Although, I had to work up to doing this amount gradually at first.

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Sitting Exercises

If you have limited mobility, sitting exercises could be a better option than other ways of exercise.

The NHS website has sitting exercises along with flexibility exercises that might be worth trying.

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The NHS live well  website has a lot of really useful tips to get you active.

I hope this short post has given you some new ideas on exercise for Fibromyalgia. My goal is as always to help others with Fibromyalgia and similar invisible illness.

I’m interested in hearing from any fellow sufferers of Fibromyalgia, particularly if you would like to share your experiences on my blog.