Does it really matter what I eat?

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Could it have an impact on my health?

Why should I be aware of my cholesterol level?

I can see you thinking how does this link to Fibromyalgia?

Or even, why should I be interested; I’m not changing what I eat. I don’t want to eat a boring diet for the rest of my life. Living with pain I need some treats.

Well, maybe that isn’t necessarily what you would have to do.

What could happen if I ignore it and just carry on eating what I like anyway?

“I was shocked when we found that my carer has high cholesterol. Looks can be deceptive as this news reveals.

I thought they were super healthy, not visibly overweight; they exercise and visit the gym regularly. 

Perhaps more surprising, they rarely go out to restaurants or visit fast food outlets. Preferring to eat a modest meal at home.”

What is cholesterol?

It’s a fatty substance in the blood, produced by certain foods which can cause arteries to be blocked.

Why is high cholesterol a serious health concern?

If you have high cholesterol levels, your chances of suffering a heart attack or cardiovascular disease are much greater.

What can be done to lower it?

Changing your diet to a healthy balanced one, stopping smoking and regularly getting exercise.

My carer went for a free NHS Health Check which is available to UK citizens between 40 – 74. 

It checks if you would be likely to develop heart disease, kidney disease, dementia, type 2 diabetes or a stroke.

Imagine how you would feel if someone you cared about was diagnosed with high cholesterol.

If you think your cholesterol could be high, your doctor or health professional can arrange a blood test to check these levels.

They will be able to discuss a plan to help you lower it, if it is high.

Since my carer’s diagnosis; they have made changes to the diet they eat. This has helped a lot to not only reduce cholesterol to a healthy level and also lose weight.

What do you say to someone with #Fibromyalgia?…..

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

In my personal struggle with fibromyalgia this single fact has caused me the most stress over the last 15 years.

You may ask, if you know someone or meet someone with fibromyalgia. What should you say?

Show them compassion and listen to them. Just taking the time to talk about it in a non judgmental way will help.

Let them know you want to help them if they need it.

It’s difficult to ask for help when you are struggling.

Give an open invitation to join in or not if it’s a bad day.

Not feeling under pressure to attend, as symptoms come and go without any warning. Being included is important and can help to distract the mind from pain.

Try to avoid this….

I have Fibromyalgia.

When I meet people, l explain this

They think it’s a fake illness,

Or I’m lying,

because:

I appear normal

They say,

You don’t look ill’

I’ll reply,

You wouldn’t be able to see anything…

It’s an invisible illness,

It doesn’t make me grow two heads 👥

It’s not a disease that turns my head bright purple 👿

Or make my eyeballs enlarge to the size of plates 🔘

As ridiculous as these examples are….

I ask

Would you believe me then?…

And

What don’t you believe?…

Why do I have to constantly prove the validity of my illness

with cross questioning?

Such as…

Perhaps it’s because you are stressed?….

It’s all in your head….

You’re imagining it….

It can’t be as bad as you describe….

All of the above questions are not helpful;

I thought you had more intelligence than that.

So, 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.

The NHS description of fibromyalgia gives more information about the condition.

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.

Discovering Florence…

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Sometimes it’s easier to focus on others to put your own problems into perspective.

You may of read about Florence Nightingale as a student, but you may not be aware of her link to fibromyalgia or indeed Florence, Italy.

She was an inspiring person who despite illness and injury, lived an exceptional life.

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.

Mobility Secrets with Fibromyalgia

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

When you have Fibromyalgia it is a daunting prospect, keeping fit. Particularly starting out for the first time, with a new exercise.

On a visit to my Physiotherapist recently I mentioned I go walking regularly. She said doing moderate exercise can build up strength and help with mobility.

After I was was diagnosed with Fibromyalgia in 2004, I found that exercise helped me a lot to keep a reasonable level of mobility. But I struggled to find things I could do. 

I have made a list of everything that has helped me that you could try. If you’re starting out try hydrotherapy first and then some gentle flexibility exercises.

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.

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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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.

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

I hope this post has helped to give you ideas to improve mobility for Fibromyalgia. My goal is as always to help others with Fibromyalgia and similar invisible illness.

 

Your working, with fibromyalgia?

Yes

I’ve had fibromyalgia since 2004 and have kept working.

How?

Fibromyalgia is not a degenerative disease; studies have shown, for most sufferers it will stay the same or improve. Knowing this fact can help to give you a positive outlook on your future. Perhaps working towards small achievable goals to improve your health.

My story 

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 what your symptoms are and how they affect 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.

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.

Lastly…post me your experiences of working with fibromyalgia and other related illnesses.

The secrets to better #sleep…

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A few simple changes can make a difference to your quality of sleep. I know this very well from first hand experience, having suffered from poor unrefreshing sleep for years.

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). 

“If you’re thinking, I don’t have fibromyalgia, it’s still worth giving these suggestions a try.”

“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 a meditation, like yoga nidra or one for helping you to get 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 drowsy like reading or a yoga nidra sleep meditation 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.