BOOK REVIEW ON DAILY SYMPTOM TRACKERS…

I have written before on how keeping a diary of your symptoms can be a great help for your GP or Consultant to totally understand your condition and symptoms. As I have mentioned before I was diagnosed with Fibromyalgia simply because my spinal consultant asked me to write down every pain and ache after my epidural for six weeks so he could see if the injections were worth giving. After reading my diary he immediately said he was sure I was also suffering from Fibromyalgia and referred me to a Rheumatologist.

When I spotted these books I thought you would all agree with me that just the look of the pretty Fibromyalgia (and other conditions ) symptom checker would prompt me to use them on a daily basis.

The Fibromyalgia CFS ME MS Cancer Daily Symptoms Tracker: A 3-month Fill in the Blank Health and Well-Being Self-Assessment Diary Journal Tracker Logbook… Chronic Pain and Invisible Illness sufferers…’ is a A 3-month fill-in-the-blank health and well-being self-management diary journal tracker logbook for Chronic Pain and Invisible Illness sufferers. Worksheets include: Personal InformationMedical ConditionsMedicationsHealthcare ContactsAppointmentsDaily Symptom tracking. Weekly Symptom SummariesFood and Beverage trackingNotes .Great for people with:FibromyalgiaPolymyalgiaChronic Fatigue Syndrome (CFS)Myalgic Encephalamyelitis (ME)Multiple Sclerosis (MS)CancerChronic PainUndiagnosed Conditions. Take the diary to doctor’s appointments to help remind you of often-forgotten-to-mention symptoms experienced and to work with your treating health professionals to gain diagnosis, explore and provide feedback on treatment options to self-manage your diagnosed and undiagnosed medical conditions and symptoms, the medications taken, natural remedies tried, and help identify your specific patterns and triggers by Char Casey, Owner / Founder, eDiY Publishing.

Char was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and possibly MS in late 2016. It took 5 long, frustrating years of doctors appointments and tests before finally receiving a diagnosis. Getting a diagnosis was just the first battle; getting proper treatments and finding doctors who knew, understood and or believed in the diagnosis and didn’t make accusations of hypochondria, mental health issues and drug seeking were the bigger, real battles. Char finally met the right healthcare professionals in 2018, and although symptoms are still ever-present, It has somewhat improved – though she would love it to improve further.

At the height of Char’s pain and fatigue symptoms, and feeling completely alone and unsupported by family, friends and health care professionals, out of frustration she started recording her daily symptoms in a spiral notebook and taking it to appointments with her in the hope to prove her symptoms and would be taken seriously and receive treatments to ease up the severity. But, Char struggled to write (among other things), and so, already a self-publishing author, she decided to create a simple to fill in book for her to use. 

Over a number of weeks, Char created the files, published and then ordered proof copies and started filling it in. She took the ‘diary‘ to Pain Clinic appointments, where she finally started receiving the diagnosis and treatments. The Pain Clinic team – consisting of Pain Specialists, Physiotherapists, Occupational Therapists, Psychologists and Psychiatrists – each commented on the daily symptoms tracker which helped them to learn what information they considered important / unimportant, and layout the information so that it made sense for them (as well as for Char).

Char says she is often still bedridden for days and weeks on end, and so revised the daily symptoms tracker to reflect the advice received and recently decided to publish it so that others could track their symptoms too, to give her something to do – she says ‘it is frustrating not being able to work or even do housework most of the time.’
Propped up in bed, Char started out only being able to do 5 to 10 minutes worth before she became too fatigued to continue. But she is now able to work longer – so long as she takes frequent breaks and listen to her body signals.
I am sure we all relate to Char and I just felt these two books were worth posting on here. They would make a lovely gift if you know someone who is struggling to get a diagnosis and may help someone along to a more comfortable life.
Char’s second book is called Invisible Illness Daily Symptoms Tracker. A 3 Month Fill in the Blank Health and Well-Being Self Assessment Diary which to me, looks far more masculine and perfect for that gentleman you may know who doesn’t like talking about his symptoms. Both books are available from Amazon.
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WORLD FIBROMYLAGIA AWARENESS DAY – 12th MAY, 2019…

On May 12th and throughout the month of May of each year, people worldwide spread awareness of fibromyalgia and other chronic pain conditions through live events, online activities, and personal efforts. In the UK our awareness day is 2nd – 9th September but we can still raise awareness in the UK this May.

Join the millions of people who will be participating on this day by holding various events to raise awareness for fibromyalgia, an invisible and debilitating chronic condition.

Awareness and funding are the keys to battling the enigma that is Fibromyalgia, and this day was created for just that.

Symptoms of Fibromyalgia may include heightening skin sensitivity – especially to pain, muscle stiffness, some difficulties sleeping, problems with memory and concentration, extreme tiredness, and headaches.

These symptoms are not uncommon in other diseases – and some sufferers don’t even experience all these symptoms – so it’s easy to see what makes fibromyalgia so tricky to diagnose.

There is no cure for fibromyalgia, so at the moment the only option for sufferers is to have a number of treatments. For example, medication such as painkillers and antidepressants are often prescribed.

Fibromyalgia Association has been involved in producing an online fibromyalgia learning package for professionals and patients.  Fibromyalgia UK have it and It is free and after testing a certificate can be printed off.  While some of it may obviously fit the American system rather than the NHS, it is still a useful resource with much valuable information.

8 TIPS ON HOW TO FIND INNER PEACE…

1. A basic meditation which you could try for 10 minutes each day is to start by finding a quiet space and sit comfortably with your hands on your lap, keeping your back straight and neck relaxed.

2. Now breathe deeply and gaze into the middle distance and take nice deep breaths in through your nose and out through your mouth and on the last exhalation, close your eyes,

3. Notice your posture, the weight of your arms and hands, the sensation of your body touching the chair, your feet on the ground and what you might smell, hear or taste.

4. Now turn your mind inwards to scan your body from head to toe, observing any tension or discomfort then scan again making a note of the parts of your body that feel the most relaxed.

5. Notice any thoughts that arise without trying to alter them.

6. Now observe the rising and falling of your breathing in your body and where the sensations occur. Focus on the quality of each breath, deep or shallow, long or short, fast or slow.

7. Count 1 as you inhale, 2 as you exhale, 3 on the next inhalation and carry on in this pattern until you get to 10. Repeat this five or six times and if any thoughts appear to guide your attention back to your breathing.

8. Spend 20 to 30 seconds just sitting then slowly become aware of everything and slowly open your eyes.

LIVING WITH A CHRONIC ILLNESS – WHAT DOES THIS ACTUALLY MEAN?…

What does living with a chronic illness actually mean?

A chronic illness is an illness that is persistent and long lasting. It is a permanent illness/condition that may not be life threatening in the foreseeable future, but it’s something you will have to suffer from and live with. The chances are there is no cure for it but you will control it with a cocktail of remedies from drugs to alternative therapies.

Some chronic illnesses get worse over time, and others come and go over months or years. There are lots of different chronic illnesses, and each has different causes and symptoms. Some examples are:

  • epilepsy
  • asthma
  • cystic fibrosis
  • cancer
  • diabetes
  • depression and other mental health issues
  • Fibromyalgia

Chronic illness can also influence your ability to work. Morning stiffness, decreased range of motion, and other physical limitations may force you to change your work activities and environment. A decreased ability to work may also lead to financial problems.

As you learn more about your illness and how to take care of yourself, your feelings may change. Fear or shock may give way to anger because you have an illness. You may feel sad or depressed because you may not be able to live the way you used to live.

Chronic or long-term illness and its treatment pose special problems. You need to learn how to:

  • live with the physical effects of the illness
  • deal with the treatments
  • make sure there is clear communication with doctors
  • maintain emotional balance to cope with negative feelings
  • maintain confidence and a positive self-image

When you’re living with a long-term condition, it can be helpful to learn everything you can about your symptoms and treatment options. Ask your doctor specific questions about your condition, but don’t stop there.

Your local library and patient associations for specific conditions are excellent resources for increasing your knowledge base. You can also find information online, although some sources are more accurate and reliable than others. Join a support group either online or at your local hospital. Support groups can help in so many ways that it’s definitely worth finding one for your condition.

Here are 10 helpful strategies from Harvard Health for coping with a chronic condition.

  • Get a prescription for information. The more you know about your condition, the better equipped you’ll be to understand what’s happening and why. First direct your questions to your doctor or nurse. If you want to do more in-depth research, ask them about trusted sources of medical information on the Web.
  • Make your doctor a partner in care. We’d put this one more bluntly: Take responsibility for your care, and don’t leave everything to your doctor. One way to do this is to listen to your body and track its changes. If you have hypertension, learn to check your blood pressure. If your heart has rhythm problems, check your pulse. For heart failure, weigh yourself every day and chart your symptoms. This kind of home monitoring lets you spot potentially harmful changes before they bloom into real trouble.
  • Build a team. Doctors don’t have all the answers. Seek out the real experts. A nurse might be a better resource for helping you stop smoking or start exercising. You’ll get the best nutrition information from a dietitian.
  • Coordinate your care. In an ideal world, the specialists you see for your heart, your diabetes, and your arthritis would talk with each other every now and then about your medical care. In the real world, this doesn’t usually happen. A primary care physician can put the pieces together to make sure your treatments are good for the whole you.
  • Make a healthy investment in yourself. Part of the treatment for almost any chronic condition involves lifestyle changes. You know the ones we mean — stopping smoking, losing weight, exercising more, and shifting to healthier eating habits. Although these steps are sometimes relegated to the back burner, they shouldn’t be. The people who make such changes are more likely to successfully manage a chronic condition than those who don’t. Investing the time and energy to make healthy changes usually pays handsome dividends, ranging from feeling better to living longer.
  • Make it a family affair. The lifestyle changes you make to ease a chronic condition such as high cholesterol or heart disease are good for almost everyone. Instead of going it alone, invite family members or friends to join in.
  • Manage your medications. Remembering to take one pill a day is tough; managing 10 or more is daunting. Knowing about the drugs you take — why you take them, how best to take them, and what problems to watch out for — is as important as learning about your condition. Talking with your doctor, nurse, or a pharmacist can put drug information into perspective.
  • Beware of depression. Dark, dreary moods plague a third or more of people with chronic diseases. Depression can keep you from taking important medications, seeing your doctor when you need to, or pursuing healthy habits. Read up on the signs of depression. Let your doctor know if you think you’re depressed or heading in that direction.
  • Reach out. Doctors, nurses, and other health care professionals aren’t always the best reservoir for information about what it’s like to recover from open-heart surgery or live with heart failure. To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing.
  • Plan for end-of-life decisions. If the diagnosis of a chronic condition, or life with one, has you thinking about death, channel those thoughts to the kind of care you want at the end of your life. Spelling out whether you want the most aggressive care until the very end, or whether you’d prefer hospice care and a do-not-resuscitate order, can save you and your loved ones a lot of confusion and anguish later on.

ACTIVE POSTURE SHIRT ON ITV’S LORRAINE…

On Thursday 8th November on ITV’s Lorraine program Dr. Hilary talked about back pain.

He explained how many people suffer from back pain but if you promote good posture it could help to alleviate some of the pain, especially in the thoracic and neck region.

With today’s technology many people have their neck bent for most of Active Posture’s, posture shirt can help with this problem by correcting your posture for you which was worn on Lorraine.

I have reviewed this shirt before as I felt a real benefit in my thoracic area after wearing it.

If you missed it then this is the link to the second review which basically explains all about the posture correcting shirt from Active Posture.

It makes sense that good posture will help anyone with spinal problems and I noticed a difference after wearing mine but I had no idea how many other people were looking for something like this for them.

I have since done a little bit more research on posture correcting items which are quite widely available on the internet. They vary in price from this brace posture orthotic corrector back adjuster for as little as £5.42 from Gear Best to a posture brace/corrector from Back Pain Help at £39.99

Amazon has over 8,000 results for Posture Correctors which again vary in price but if I type in posture correcting shirt then you have to scroll over quite a few pages to find a proper posture shirt like this Skins Mens DNAmic Ultimate K-Proprium Posture Top at £98.23 which states that it has Biomechanically placed Proprioceptive Power Bands wrap the body’s prime movers to give them the support they need to stay activated and able to control motion for longer periods of time. But it doesn’t go into any detail about it helping with pain.  

Tommie Cooper Womens Posture Shirt also on Amazon has said it has targeted compression to the shoulders and muscles along the spine and helps relieve everyday aches and pains at a cost of £72-£197. 

It is obvious that to get the best ones of these tops/shirts to help with your posture and ease pain will definitely not be cheap but as with anything in life, you pay for what you get. I’ve only tried the posture correcting shirt from Active Posture at £89.95 so I cannot comment on any others that I have written about above,  but it’s a trial and error for anyone wanting to give this a try and Active Posture do offer you a money back guarantee and has five stars from 803 reviews. So maybe that’s why I had so many readers on my review of this top.