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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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

CONTROL MY PAIN – WEEK 6 – COMMUNICATION AND DEALING WITH PAIN FROM THE LOSS OF A LOVED ONE …

This is my review on Week 6 and Conclusion 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 Six – Communication

Communication and relationships are discussed through a video which explains in great detail on how important it is to have a good communication and relationship with anyone who is looking after you as your pain may interfere with your communication. Your relationships are important to your well being and can increase or decrease your pain.

They then go into communication styles through a quiz and explain with an infographic on 10 tips to help a family member in pain. Another infographic will help you to improve communications when living with chronic pain. I think the infographics are a brilliant way to remind you how to deal with certain pain problems and are something you can always look back on if you are going through a bad patch with your family/carers/friends.

This particular lesson was even more appropriate for me at the moment after losing my father two weeks ago at the young age of 93. I had no idea how the loss of someone so dear could affect my pain and health. It’s been an uphill struggle ever since but as my father had been in hospital for the last three months it should not have come as a surprise to us that he could end up with pneumonia, which eventually took his life.

This week’s session on how to let your family and friends know how you are feeling has made it easier to speak to friends and family without feeling that the odd tears are good for your pain rather than boxing it all up which then causes more pain.

For anyone suffering from chronic pain in any way be it emotionally or physically this program will definitely help you get through it. You can look back on different strategies they have put together whenever you need it but always remember to discuss your problems with a Doctor or specialist before trying anything different to do with your pain control.

I would suggest you also write the the details of this program down to take to your Doctor so they can also see the advantages of this type of treatment for dealing with chronic pain.

A CLOSE LOOK AT FIBROMYALGIA SYMPTOMS…

A close look at #fibromyalgia symptoms…

There are a large number of symptoms of #fibromyalgia but the main symptoms as listed on the Fibromyalgia Support Network are -It is very important that other possible causes are ruled out. The number of, and severity of the rest of the symptoms, seems to be different for every person. They can also vary from day to day, even minute to minute. You could be walking along limping from a severe pain in your left leg for a few minutes, that slowly wears off, only to have a worse pain in your other leg next time you start walking.

The main symptoms of #fibromyalgia include:

      • Chronic widespread pain without apparent cause
      • Fatigue
      • Sleep Disturbance
      • Cognitive Dysfunction
      • Morning Stiffness
      • Cramping and Muscle Spasms
      • Restless Leg Syndrome
      • Digestive Problems
      • Headaches and Migraines
      • Skin Sensations
      • Balance Problems
      • Sensitivities – to just about everything are common as well. Sensitivities to:
        • Touch – It can feel ‘uncomfortable’ to be touched. Tickling can be completely unbearable.
        • Heat – sweats and feelings of breathlessness
        • Cold – increases in pain and difficulty getting warm
        • Changes in the weather – pain increases
        • Side effects from meds – more susceptible to side effects and side effects can be more severe. Also, a med that works well for one person can make another very ill.
        • Foods – Common foods that people become especially sensitive to include chilli, dairy, gluten and fatty foods.
        • Light – Bright or glary light can be an issue. So can seeing in low light levels.
        • Sound – Loud sound can cause tinnitus. It can also be very difficult to separate sounds, like when talking to someone in a noisy room.
        • Taste – Some tastes can appear stronger than others, and this can vary.
        • Smell – a sense of smell can be diminished, but it can also be more sensitive. Can cause nausea and headaches.
        • … the list goes on and on.

For me personally from this long list of symptoms I suffer mostly with chronic widespread pain, fatigue, sleep disturbance, digestive problems, balance problems and most definitely some of the sensitivities listed above. What do you suffer from most?

The Fibromyalgia Network that has this list is based in Western Australia and was formed in Perth by Dr Kaye Brand, Physiotherapist. Kaye was diagnosed with Fibromyalgia in the mid 90’s, finding no support and little understanding of the challenges facing those with this diagnosis. She studied overseas, including a scholarship to the USA on Advocacy Training for Fibromyalgia sufferers.  In 2007 Kaye founded the Fibromyalgia Support Network WA along with Sian Doughty, the earliest member.  The Network became incorporated in 2011 and was granted a Charitable Collectors License.