Living an exceptional life with Fibromyalgia

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Following on from a recent post highlighting inspiring people who despite illness and injury, have lived exceptional lives.

I’m focusing on Florence Nightingale mentioned in my page about me I want to explore a bit more about her life and link to fibromyalgia. 

Florence was quoted as saying

“There is no part of my life, upon which I can look back without pain”

Florence was born on May 12, 1820, in Florence, Italy, after which she was named. She was the youngest of two children.

Florence was born into a wealthy family and was expected to get married and have a children. Florence rebelled against this stereotype. She had always helped to care for sick people and started working as a nurse.

Florence was sent to nurse injured soldiers during the Crimean War. She proved to be a very dedicated nurse; visiting the injured every evening on a regular basis which started the phrase ‘the Lady with the Lamp’.

Because of her influence in nursing practices unsanitary areas were improved which increased the survival rate of patients.

Florence wrote about her nursing techniques from experience, which formed the basics for standards in nursing care adopted for the profession.

During 1860 St Thomas’ Hospital and the Nightingale School for Nursing was opened.

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Florence and fibromyalgia

Florence suffered from an invisible illness after she returned from nursing solders in the Crimea War.

Her symptoms are reminiscent of fibromyalgia; which was not a recognised condition at the time. Florence spent prolonged periods in bed, due to her illness. This was probably triggered by excessive stress carrying out her duties nursing in terrible conditions.

In recent years soldiers from the Gulf  War have gone on to develop fibromyalgia after they returned from war. The unbearable stress they were exposed to at that time triggering fibromyalgia.

Florence died on August 13, 1910; she received the Order of Merit in 1907 for her contribution to modern nursing practices. Florence was an amazing woman who cared for others and put others health before her own.

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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.

Inspiring people with illnesses and injuries

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In Britain we need to hear about an inspiring leader, at the moment, who despite personal injuries and constant illness overcame these and became a national hero.

I have fibromyalgia. What gets me through bad pain days?

After reading a Facebook post, asking fibromyalgia sufferers to swap ideas about what helps on bad pain days.

I immediately thought… chocolate. 

Then I thought…

Banish the bad if possible, like excessive stress.

My symptoms get worse on stressful days, as most people do when under pressure.

An invisible illness like fibromyalgia can mean it’s difficult to explain how we are feeling to others; especially people close to us.

It’s not like having a cold or broken leg, which over time recover. The pain and other symptoms are always there in some guise and will never go.

Its good to remind myself occasionally of the good things l can enjoy.

Perhaps making a list…

1 Chocolate!

2 Reading a gripping book

3 Writing a post

4 Chatting to friends 

5 Watching a good film

6 Walking

7 Inspiring people…..

Thinking more about this got me imagining what it might of been like for someone many years ago, who fell ill or was injured. Perhaps a famous person in history who has shown great courage and achievements, despite suffering from numerous illnesses, debilitating wounds and depression.

Vice-Admiral Horatio Nelson; a British Navy admiral, may not immediately come to mind.

Nelson is a celebrated hero in Britain for his great victories in the Napoleonic Wars and at the Battle of Trafalgar.

He was born on 29 September, 1758 at Burnham Thorpe in Norfolk. Accounts of him from the time describe a slightly built, sensitive child. Perhaps not obviously someone who would become a great courageous hero. Although early biographies describe Nelson as a brave and honourable boy. His mother died when he was just 9 which upset him for years to come. He joined the navy at the age of 12.

In his lifetime Nelson contracted malaria and survived. He was hit by musket ball distroying his arm and had it amputated. Nelson was reportedly giving orders again, after half an hour of the amputation. In 1798, Nelson lost his sight in one eye during the Battle of the Nile.

Sailing on his most famous ship called Victory, in 1805 at the Battle of Trafalgar. Nelson invented a new strategy for steering his fleet of ships. The Spanish and French fleets were trying to invade Britain. The British fleet won the Battle with Nelsons leadership but Nelson was hit by a musket ball and fatally injured. He died after hearing that his fleet had won the battle. A state funeral took place at St Paul’s Cathedral in London on January 9th, 1806.

A memorial to Nelson, named Nelsons Column stands to this day in London in the middle of Trafalgar Square.

Its inspiring to read about Nelson and visualise living on board ship back then. I visited the Nelson Museum  in Great Yarmouth, Norfolk and discovered more about him and the illnesses and injuries Nelson suffered. The most incredible thing, I thought was his heroic achievements in spite of these. 

How did he do it? 

He fought and won battles; showed incredible courage and determination to succeed. Throughout all this he described himself in a selfless way, writing in a letter;

‘I got a little hurt this morning’. Nelson had been hit in the face when a shell exploded and was blinded in the right eye.

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Spotlight on Mindfulness for fibromyalgia

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This week, I thought it would be worthwhile spending time discovering how mindfulness can help and perhaps trying it out.

In a previous post I mentioned that mindful meditation has been proven to help the symptoms of fibromyalgia. 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.

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 lifetime free from pain

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I wish……..

Living with a invisible illness like fibromyalgia I can never forget about it. 

I’m naturally a positive person and find every day my body feels different in some way. 

I can wake up with my head full of things I want to do and a body unable to carry them out. Normal everyday tasks are restricted by fibromyalgia. Over time I have adapted tasks to enable me to carry out as much as I can.

The single biggest obstacle I face on a daily basis is based purely on other people’s perceptions of me with fibromyalgia. Just putting it into words is difficult. 

I’m constantly frustrated how difficult it is to give an accurate explanation of what fibromyalgia is and what it’s like to live with.

Saying that, it’s difficult to be accurate because everyone that gets fibromyalgia has different symptoms and severity which can complicate a good definition.

This difficulty is illustrated well by my carer who recently said….

‘Every time I explain what it is, it takes half an hour,’

‘People go quiet,’

People seem to second guess what it is, and not listen to a explanation…

‘I know, Fibro cystic……. yes, I’ve heard of that, that’s not good,’

Oh,……I had something similar when I was young, it made me really ill for months,…..but now I’m fine.

Just to be clear,     IT’S    NONE    OF    THE    ABOVE

I am going to try now, with the following definitive list of symptoms.

My definition will be accurate in my individual case only.  Some of these symptoms may be shared by others with fibromyalgia.

The fibromyalgia I live with varies from day to day in severity. It can include all of these symptoms at sometime, not always together but occasionally I can have several at once.

Aches and pain throughout the body 

Anxiety 

Balance problems 

Bladder problems 

Bloating 

Cognitive problems 

Depression 

Dizziness

Dry mouth and eyes

Fatigue 

Fibro fog

Frequent Headaches 

IBS

Jaw pain

Light sensitivity 

Lower back pain

Muscle spasms 

Noise can impact on my symptoms 

Numbness

Painful periods

Pain in joints and muscles 

Physical activity increases can exacerbate my condition 

Poor quality sleep 

Rashes

Restless leg syndrome

Sensitivity to smell

Stress can affect my symptoms on a daily basis 

Stiffness 

Sinus’s problems

Temperature changes effect pain in the body

Tingling 

Tinnitus 

Types of pain experienced a ache, burning pain and sharp stabbing pain 

Varying degrees of pain 

There’s no cure, but with exercise and diet symptoms can be improved to some degree.

As you can see Fibromyalgia is a difficult illness to describe and live with, because it encompasses so many variables. 

If you are worried about having similar symptoms and have not received a diagnosis for them, you should contact your doctor or health professional for advice.

Have a look at the NHS description of fibromyalgia,  and links to support groups and the online community if your a sufferer.

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.

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How to unlock the secrets to better sleep with fibromyalgia

pexels-photo-374898A few simple changes can make a difference to your quality of sleep. 

After weeks of not sleeping the body’s functions become impaired making it extremely difficult to function in a normal way. (Whatever normal is for a fibromyalgia sufferer). 

I know this very well from first hand experience, having suffered from poor unrefreshing sleep for years.

Insomnia, fatigue and pain are all part of life if you live with fibromyalgia. The symptoms of fibromyalgia, such as fatigue and pain are all made worse with poor quality sleep.

Over time I’ve found some solutions that have helped me get a better nights sleep. Obviously, there’s no one size fits all with these suggestions. That said, it’s still worth giving them a go. Just being aware what might work is useful. 

On occasions I still find I have some problems sleeping but I can solve these more effectively than previously.

Common problems experienced range from:

  • getting to sleep
  • staying asleep until morning
  • waking during the night
  • getting back to sleep after waking up

Have a look at the following suggestions for improving your sleep

  • Go for regular exercise every morning, for example a walk 
  • Check your bedroom temperature and lighting are beneficial for sleep 
  • Adjust your bed and pillows to make it as comfy as possible 
  • Invest in a electric blanket to warm the bed before you get in and help relax muscles 
  • Avoid smoking, over eating or drinking caffeine directly before bedtime 

My top tips for getting to sleep

  • Help your mind wind down for the day
  • Get into a regular sleep routine for adjusting your Circadian rhythm, try to get up at the same time every day
  • Turn off all devices that emit blue light an hour before bedtime
  • Read a relaxing book or listen to gentle music
  • Try meditation, particularly one for helping you to sleep 
  • Use ear plugs and a eye mask to block unwanted noise and light
  • Get into a comfortable sleep position and then try a relaxation routine 

Whilst you are asleep make sure your room doesn’t have anything that will wake you like a mobile phone.

A pet that sleeps in your bedroom and disturbs you in the night, should be encouraged to sleep elsewhere.

If you wake in the night and cannot get back to sleep get up and find something that makes you tired then return to bed.

If you find by morning you have not had enough sleep go back to bed and sleep for a while longer. If you catch up with a couple of hours sleep every night you will see the difference after a few months.

I recently read several articles which mentioned vitamin D (sunlight) exposure daily in the morning shortly after rising can help and mindfulness meditation both improved the quality of sleep in fibromyalgia sufferers. 

I believe this to be true because I usually get up and do a daily walk every morning and this regulates my circadian rhythm over the next 24 hours. It’s more important to get up at the same time every day than the time I go to sleep. 

I’ve found improvements in my concentration and ability to switch off at night after practicing regular Meditation on a daily basis. Explore meditation apps for sessions covering mindfulness and sleep. Have a look at my Fibromyalgia Self Help pages on  Meditation and  Exercise

If you have insomnia and it’s not necessarily fibromyalgia related, get it checked out by your doctor or health professional. If they prescribe sleeping pills it would be advisable to be referred to see a specialist sleep consultant.

Have a look at the  NHS sleep self assessment  to determine how good your sleep is.  From this link you will find some helpful information about sleep.

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How can I keep working with fibromyalgia

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I’ve had fibromyalgia for fourteen years now and have kept working. How have I been able to do this?  Thinking back, I wonder myself.

Every day is a struggle. I wake up tired, my body is aching. Just getting up out of bed and moving about can be difficult with fibromyalgia.

When I was first diagnosed and before this.  I felt tired, fatigued and had pain in my body for months that just got worse. Nothing I did seemed to help. To some extent it was a relief to find out what was wrong.  I had managed to keep working and had odd days off.  These days stretched into longer periods of time off. 

After the fibromyalgia diagnosis, I slowly started to learn, how to manage my symptoms on a daily basis. Finding out my limitations and how much I could do without making my symptoms worse or triggering a flare up took time to find out. I found stress played a big part in making symptoms worse. Making sure I took adequate rest breaks during the day was essential. 

At some point during these initial first weeks you will want to consider what changes you need to make in your life to help manage fibromyalgia symptoms. One of them may be to re-evaluate your work choices. Perhaps looking at alternative jobs after doing thorough research.

Thinking about what would help you do your existing job and talking to your employer is worth considering. Beforehand gather together evidence to support your diagnosis such as doctors letters. Get the support of your superior and other more senior staff.  Explain to them what it’s like and how it’s affecting you. Perhaps taking along a diary of symptoms, would be easier to illustrate how to adapt your job. Approach this in a positive way showing you can be flexible, will help.

If you are newly diagnosed, your first step could be to educate others working with you, what fibromyalgia is. Your relationship with colleagues is important when your working, if they have a understanding of your condition it will help you feel more confident about work.

Things that could help you……

If you live in the UK have a look at the following information.

If your looking for a job, finding work with an employer in the UK who is disability confident can make a difference. Depending on what they have signed up to they are encouraged to recruit new staff and retain existing employees who would be defined under the equality act 2010 as having a disability.

The equality act 2010 states that all employers in the UK must make reasonable adjustments  for people with disabilities, or a long term health condition, so they aren’t disadvantaged when carrying out their jobs. 

Your employer can look at ways you can adapt your role, within the reasonable adjustments criteria. This could include switching your working hours to more suitable times or looking at special equipment to help you carry out your role. 

A UK access to work  assessment may be able to highlight things you have overlooked that could help you carry out your work. The assessor contacts you to find out more about your circumstances and makes recommendations to suit you.

So, what else can I do?

I personally think that having a long term health condition has made me more aware of my health and well-being. I look after myself better than some of my peers.

Because I need to exercise regularly to keep my body moving I have a very good awareness of what I need to do to keep as fit and healthy as possible. Take a look at my pages on Exercise , Diet and Irritable Bowel Syndrome and Fibromyalgia Self Help.

Telling your family and friends and explaining how it affects you. With their support you will be able to achieve more.

Having a positive mental attitude and setting yourself realistic goals. I use meditation to help me find focus and a positive direction in my daily life. Follow my link to meditation  for information about this.

I would welcome any fibromyalgia sufferers to get in contact with me about your experiences.

 

 

 

Keeping Positive and Motivated with Fibromyalgia

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Or trying to…….. When you have a long term condition like fibromyalgia and you often suffer from constant pain on a daily basis, it’s difficult to keep positive and motivated.

In January it’s probably more likely that you will feel more fed up. Feeling flat and deflated after Christmas is common for some.

My most FAQ as a fibromyalgia sufferer is….

‘Why am I in pain again and what will make me feel better?’

In truth there’s no quick fix. It’s going to vary quite a bit from person to person what can help. 

Putting a positive slant on it. It’s a new year, and it could be time to try out a new hobby or something you have always wanted to but have never taken the time. I like creating things as you all know in decoupage! Being absorbed by a hobby for me really lifts my spirits. Working on a project and seeing it through to completion is really exciting for me. 

Even writing my blog is a great way to help put things into perspective sometimes. 

Personally I have found any form of distraction helps.  When my pain is very bad watching a film or tv program helps. Even though it is only for an hour or so; if I can be pain free just for an hour it’s really helpful. 

Listening to your favourite music, talking to friends or family, looking at photos and reading a gripping novel are all ways to distract the mind.

I am lucky that I am able to work part time. I’ve found it helps me to some extent, as a distraction from pain. My job involves helping others and I find this is rewarding because it gives me a sense of purpose. I think if I did not work I would do some form of voluntary work, which involved helping others. 

Voluntary work is definitely worth considering if you are looking for a new challenge and it can be very rewarding. It benefits both the worker and employer and lots of various roles exist. If you are disabled or housebound don’t rule it out because many roles exist for homeworkers.

A number of organisations can help you to find volunteer roles in the UK.  The organisation Do-it offers lots of opportunities to volunteer, in areas nearby or from home.

What might you want to do?

What’s your inspiration?…….

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