“BUT YOU DON’T LOOK IN PAIN?” WHAT SOME SAY TO PEOPLE LIVING IN CHRONIC PAIN…

“But you don’t look in pain?” What some say to people living in chronic pain.

I bet most of my readers will have been told this at least once while they are actually in great pain.

I have many a time wondered why some people have to make say this comment about how you look. I mean why on earth would we say we are in pain if we arent?

Did you know that the National Health Service spends more than £1 billion per year on back pain related costs? In the private healthcare sector, £565 million is spent on back pain every year. Back pain is the number 2 reason for long-term sickness in much of the UK. In manual labour jobs, back pain is the number one reason.

It also does not help if you are suffering from #fibromyalgia pain as for years it was described as general aches and pains or even seen as mainly psychiatric, related to depression and anxiety. The trouble with #fibromyalgia is that as yet no authoritative test has been established.

The British Pain Society says that approximately 8 million adults in the UK  report chronic pain that is moderate to severely disabling.

So, how are you supposed to look if you are in chronic pain?

The Harvard Medical School call chronic pain the “invisible” disability. Laura Kiesel contributor to The Harvard Medical School writes about her own personal story of her diagnosis of #fibromyalgia and how they said ‘you don’t seem sick’. She was even told by a school nutritionist “You have such shiny, healthy-looking hair,” she explained, pinching a lock of it between her fingers as though I were a doll on display. “People who are really sick don’t have hair like yours.”

Spine Health says that what your friend or family member needs from you is your support and kindness, not condemnation. Statements like “Get over it” or “It can’t be that bad” don’t accomplish anything other than to discourage those with chronic pain. Thankfully, there is an increasing consensus in the medical community that all chronic pain is real, and that it needs to be treated even if there is no known cause.

Pain is deeply personal. Each persons experience of pain is different. For example, two people may have the same condition, and one may display no ill-effects, while the other may be incapacitated.

An article on The National Pain Report website wrote ” If there’s no evidence of some bodily damage or injury, people seem more willing to believe we’re making it up or imagining it. They become suspicious of our motives. To them, our incapacity seems like a built-in excuse to get our way, and this provokes resentment.”

This is so true for the majority of chronic pain sufferers.

So, what’s the answer? Well, Survive Strive Thrive (I am currently covering their Control My Pain Project) have two great images which explain about chronic pain.

They also have a great quote to remember to tell anyone who does not seem to understand what chronic pain is “I won’t tell you I understand your pain because I don’t, nobody does…except you.” Failing that, listen to what Princess In the Tower says how you should respect a person in pain by understanding that we “are merely coping, sounding happy and trying to look normal.” 

I think that final statement says it all, failing that this quote is a good one as well  “I had learned quickly that life doesn’t always go the way I want it to, and that’s okay. I still plod on.”—Sarah Todd Hammer, Determination

 

CONTROL MY PAIN PROJECT- WEEK 4 RELAXATION & WEEK 5 MANAGING ACTIVITY…

This is my review on Week 4 and Week 5 of  Control My Pain Program from the Survive Strive Thrive team which was designed to teach people holistic strategies to heal their pain. The whole course is video and audio content which I think makes it more interesting and easy to understand.

Week Four is Relaxation …

The relaxation introduction video explains how mindfulness and breathing exercises can help with relaxation as a strategy to help with pain. It explains slow breathing techniques and mindfulness as not all breathing is created equal.

Next, it talks about breathing techniques with nose breathing exercises and slow breathing exercises. I found this really interesting as I quite often listen to relaxation music if I am struggling to go to sleep and using these exercises would really help.

Recognising tension is on audio or you can download for you to record the location and level of your tension. You can monitor your tension levels at about the same time every day for you to see when you are most tense. They give you a list of areas around your body to monitor like your jaw, neck, scalp shoulders etc which are some areas I would never have thought of to try and relax.

The next topic is mindfulness of self-awareness to help you to be aware of the situation you are in. This video helps you to understand how you can be more aware of your situation in order to help with your pain control.

The relaxation summary is in the usual format of a quiz and some downloadable resources.  The downloads include a sheet which you can use to practice slow breathing at a specific time every day plus a sheet to recognise when your tension arises.

In the relaxation resources section, it has all the downloads plus details of a useful book on reducing and restoring your well being.

I love filling in forms and found this week’s downloads a great way to see how I am coping with my pain and to make a note of the different relaxation strategies.

Week Five is Managing Activity… 

The managing activity details are available as an online quiz or a worksheet which helps you to see how to identify your reasons for less activity. The sheet prompts you to write down activities that you are having difficulty in completing or even are no longer even doing due to your pain. It asks you to fill in what affects the reduced activity has on your life and looks back at your answers in order to learn a variety of strategies that will help you problem solve and plan.

The next video is what they call the Boom & Bust Cycle which is in the form of a quiz, and goes straight onto Activity Pacing. You can do this virtually or actively take part in a walking programme.

The activity planner is a sheet to download and fill in and finally another sheet to download to help you to succeed by writing down how you will achieve more that week. For example, ‘this week I will walk every day at the following times’.

The Managing Activity Resources has lots for you to look at including a website and books and downloads all to do with keeping you active.

I honestly do feel that writing down your activities in the format they have done this week can only help and encourage you to do a little bit more each day or each week. I have the usual steps counter but looking at how I have increased my activity by doing a little bit more each day is an ideal way to get yourself, fitter. I really enjoyed week five on the Control My Pain Project.

10 TIPS TO HELP YOU COPE WITH THE SYMPTOMS OF #FIBROMYALGIA…

1.If at all possible try to de-stress as apparently stress may trigger #fibromyalgia symptoms. Some of the best de-stress treatments you could try are yoga (some great blogs on yoga here), exercise, sleep and meditation (great guided meditation sites here).

2.’Fibro Fog’ is a common ailment of #fibromyalgia so rather than getting frustrated that your short-term memory has let you down, try and get into the habit of jotting things down on paper on a daily basis.

3. Exercise, as in low-intensity exercise like walking, or warm water exercise is great for helping the pain of #fibromyalgia. This type of exercise can decrease pain and stiffness, the best exercises for people with #fibromyalgia can be found on Healthline.

4. Have a long soak in a warm bath or hot tub as this has been proven to relax tense muscles which will then reduce pain.

5. Try to use decaf as caffeine can increase anxiety and insomnia, so watch your intake of chocolate, coffee, teas and some soft drinks.

6.. Make your work-life balance work for you. If work is leaving you exhausted and in pain then design a flexible plan that works better for you and your boss. Maybe try some products like a telephone headset or keyboard tray.

7. Talk about your #fibromyalgia with your family and those around you. Let them know what can trigger it or make it worse. Never be afraid to ask for help from either your friends, family or other #fibro sufferers or a counsellor.

8. Many people call #fibro the ‘invisible illness’, as you can look fine but feel awful. So, when arranging your social life be prepared to say ‘no’ to something if you know it will be too much for you.

9. Try and keep a journal so that you can see what can trigger off an attack, then you can do something about it.

10. Join a support group, be it in person or online, they offer a place to talk to others who share your problems.

5 ACTS OF KINDNESS THAT HAVE BROUGHT ME JOY WHILE IN PAIN…

Simple acts of kindness can bring joy to anyone in pain.

My favourite acts of kindness that have brought me joy while in pain are –

  1. Someone offering to carry things for me.
  2. A cup of tea in bed.
  3. A phone call from a loved one.
  4. Someone giving me their seat.
  5. A note from a loved one saying ‘Thinking of You’.

What are yours?

 

BACK PAIN AWARENESS WEEK 8th-12th OCTOBER, 2018 (#backpainweek)…

Back Pain Awareness Week (#backpainweek) this year is the 8th-12th October, and the theme this year is back pain in older adults.

Backcare write that Back pain is one of the major disabling health conditions among older adults aged 60 years and older. Many causes of lower back pain are age-related with physical and psychosocial changes. There is a distinct lack of awareness, especially in older adults to the causes and effects of back pain and pain management. 

In BackCare’s TalkBack Summer Magazine an article from Arthritis Research point out that INCREASING numbers of people are suffering from low back pain worldwide – an issue being made worse by the prevalence of inappropriate treatment methods, according to recent scientific papers published by The Lancet.

It is most common and burdensome in working populations, with many older people finding that their back pain prevents them from taking part in daily activities. Although most cases of low back pain are short-lasting, recurrences are common, with the costs associated with back pain-related healthcare and work disability
shown to be enormous.

For more information on the Back Pain Awareness Week (#backpainweek) make sure you check out my posts.