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.

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BUY CHRISTMAS GIFTS THAT KEEP GIVING SOMETHING BACK…

What could be better than giving someone their independence this Christmas? Well, that’s exactly what daily living aids are designed to do.

You might have a grandparent who’s finding it increasingly difficult to walk unaided. Perhaps you have a friend who is differently abled? Or maybe you know someone who has just left hospital and will be recuperating at home over the festive period.

From larger equipment, such as rollators, to nifty gadgets, like jar openers and grabbers, daily living aids come in all shapes and sizes with the aim to make everyday tasks that little bit easier.

The best thing is that most daily living aids are now designed to fit seamlessly into a modern environment, with a contemporary look and feel, making them perfect Christmas gifts for your friends and family.

NRS Healthcare have put together a handy gift guide which you can browse through to decide what equipment may help a loved one who could do with some help. Just click on this link for the brochure.

NRS Healthcare is a award winning member of the British Healthcare Trades Association (BHTA) and abides by its Code of Practice. The BHTA Code of Practice is recognised by the Consumer Codes Approval Scheme managed by the Trading Standards Institute.

Check out their aids brochure soon, it’s never too late to help someone with mobility problems.

TEN GIFTS FOR SOMEONE IN CHRONIC PAIN…

My top ten Christmas gifts for people suffering from #fibromyalgia and chronic pain.

  1. Walking Sticks Online – an online marketplace full of unique and trendy walking sticks to suit everyone’s budget and style. From walking sticks with animal handles to ladies selection of petite handles and many more. Plus a collection of accessories for your walking sticks like this ‘Carry Wallet’ for £4.50
  2. Pain Relief Cushions – another online marketplace for all types of shapes and sizes of pain relief cushions to pop in your microwave or your freezer. From £16.99
  3. The Sciatica Relief Cushion – for anyone suffering from sciatica and low back pain.The Sciatic Pain Relief Cushion is an entirely new form of relief for Sciatica, developed by people who have experience of suffering and treating sciatic pain, from £34.00
  4. Joya Shoes Bliss for Back – shoes designed specifically for people with back painJoya shoes have come up with a type of shoe which can solve all those problems. The positive effect of a soft, springy surface on the locomotive system has been put to good use by physiotherapist for a long time now and is a highly topical subject in the fields of prevention/rehabilitation. The Joya brand has developed a shoe which makes use of this principle. The soft, supple material of the patented Joya sole means the load on the sole of your feet is ideally distributed as you walk and stand instead of being concentrated only on certain spots from £154.95e
  5. Dreamland Electric Heat Pad – I could not manage without mine. There are other makes on the market but this is my favourite. With new Intelliheat Technology for perfect temperature control.Instant heat up with 5 heat settings to choose from. Machine washable at 30 degrees. Very low running costs, less than 1p per session3 hour treatment auto shut off for your safety and peace of min, from £32 
  6. The All New Kindle Fire HD – I have the right music, the right books and the right audiobooks to help me relax and use it every single day. I think probably the best place to buy one without a doubt is from Amazon and new ones start at £79.99 
  7. A Massage from Groupon – all people in pain appreciate a massage and Groupon has some amazing offers all over the UK from as little as £15. 
  8. The  N:rem Sleep System which has an offer for my readers. If you wish to purchase a mattress you can have £30 off your order  – just quote BACKPAINBLOG at the check out.
  9. You can try the N:rem mattress for 100 nights in the comfort of your own home. This will give you the time to ensure you relax and get the perfect set-up to meet your needs. You can sleep on it and adjust the comfort and support up and down your body until it is just right for you, your partner can do the same on their side. The N:rem mattress provides the ability to tailor each side differently offering different levels of support wherever they’re needed. Simply unzip the N:rem’s cotton top cover and you’ll discover two sets of 5 variable density foam tablets,  from £540
10. iPad cushion -the perfect gift for all # fibromyalgia sufferers so they do not have to hold their iPads from Etsy from £7.00

TOP SIX BOOKS AS GIFTS FOR FIBROMYALGIA AND CHRONIC PAIN SUFFERERS…

This is my top six of books as Christmas gifts for people who are suffering from #fibromyalgia and/or chronic pain.

Pain Tracking – Your Personal Guide to Living Well with Chronic Pain by Deborah Barrett Phd, available from Amazon and other good bookstores.

This book offers a hands-on approach to improving life with chronic pain, whatever the underlying cause. As a sociologist, psychotherapist, and someone with firsthand experience with chronic pain, the author understands the challenges that accompany pain and has devised realistic strategies to fare better.

Paintracking provides a systematic method that empowers individuals to navigate the otherwise overwhelming array of treatment options and incorporate the effective ones into their lives for continued, incremental progress. Its cornerstone is a self-study tool that enables readers to improve. Readers are instructed on how to track and interpret their experience, whether using a pen and paper or the online tool offered as a companion to the book. By cultivating awareness of how their body responds in different situations and to different therapies, readers will become capable self-advocates, able to make informed choices.

Written in clear, understandable prose and filled with sociological insights, therapeutic lessons, practical tips, and empathy, this book offers realistic hope to individuals who often feel hopeless in the face of confusing, debilitating pain.

The New Bible Cure for Chronic Fatigue and Fibromyalgia by Don Colbert, available from Amazon as a book or audible and from other good bookstores. This book includes

· Steps that take you from feeling burned out to fired up
· Foods that harm and foods and supplements that restore energy and health
· Exercises that help relieve pain
· The emotional and spiritual roots of these debilitating disorders

Living with Fibromyalgia New Edition by Christine Craggs-Hinton, her third revised edition of this great book on Living with #fibromyalgia available from Amazon and other good bookstores. In line with the latest thinking of fibromyalgia as a disorder of the CNS (central nervous system), this third edition looks at how an over-sensitised system may amplify pain messages and trigger the symptoms of fibromyalgia. It also looks at research into the link between poor sleep and the disorder. Other topics include: a physical cause? – the evidence for fine nerve damage in fibromyalgia sleep problems and manage the benefits of yoga and music therapy updated recommendations on diet and supplements the importance of posture and exercise pain and stress management complementary therapies.

Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse and Ginevra Liptan, available from Amazon and other good bookstores. A #fibromyalgia patient herself, author and Fibromyalgia Coach, Tami Stackelhouse, has gone from disabled to thriving. In this book, you will learn how to Take Back Your Life using the techniques and strategies Tami has used to get well. More than just a lifestyle or self-management guide, this is a concise reference book woven with Tami’s own #fibromyalgia story.

This book is a page-by-page survival guide for the action-oriented #fibromyalgia patient who wants to feel better as quickly as possible. It’s written for the patient overwhelmed with a new #fibromyalgia diagnosis and for the fibro-veteran who is stuck and needing new ideas. It is also a great resource for the caring family members and support team of anyone suffering from #fibromyalgia.

To finish my list I have included two books that will just make you feel good when you read it. The Man I Think I Know: A feel-good, uplifting story of the most unlikely friendship by Mike Gayle, available from Amazon and other good bookstores. A powerful and bittersweet story of an unexpected male friendship and an unlikely love story, a thought-provoking storyline told, this uplifting tale reminds us of the simple courage at the heart of every human being.

Ever since The Incident, James DeWitt has stayed on the safe side. He likes to know what happens next. Danny Allen is not on the safe side. He is more past the point of no return.

The past is about to catch up with both of them in a way that which will change their lives forever, unexpectedly. But redemption can come in the most unlikely ways.

The Map of Us, The Most Uplifting Feel Good Fiction Book of 2018, by Jules Preston and available at Amazon and other good bookstores. A story of love and lost directions

Violet North is wonderfully inconvenient. Abandoned by her family and lost in an imagined world of moors and adventure, her life changes in the space of just 37 words exchanged with a stranger at her front door.

Decades later, Daniel Bearing has inherited his father’s multi-million pound business, and is utterly lost. He has no idea who he is or where his life is headed.

When Violet’s granddaughter’s marriage falls apart, Tilly, always adept with numbers, compiles a detailed statistical report to pinpoint why. But the Compatibility Index Tilly creates has unforeseen consequences for everyone in her world. Tilly and Daniel share a secret too. 10.37am, April 22nd. Soon, a complex web of secrets and lies is exposed and an adventure begins with a blue typewriter…