The Unsung Heroes

 

If you have Rheumatoid Arthritis, osteoarthritis,  Ankylosing Spondylitis, or any critical illness your pain and stress can be off the charts. Truth time: You’re not the only one hurting. Another negative side effects of being diagnosed with Chronic Arthritis is the strain it can put on our families. Our diseases can wreak havoc on day to day life.

We need to talk about their struggles, too. They do so much for us, so it’s important to acknowledge and validate their feelings.

A BIG SALUTE TO;

To the parent of a child with juvenile arthritis who wakes up earlier than usual to prepare a warm bath, so their child can move his/her joints before heading off to school. It is the parent who has to prepare a good breakfast because their child will need to take morning medicines. It is the strength of a parent who cries in the shower alone, but puts on a brave face in front of their child as they prepare their biologic injection.

To the friend of a person with arthritis who learns to hold their hands differently because crossing their fingers is way too painful.

To the spouse/partner of a person with arthritis who quietly helps his loved one dress, put on their shoes, and get ready to face the world every day, while no one else has any idea of what it may have taken to get them out the door. It is the spouse who waits patiently after the clinic doors close, leaving them alone with their thoughts and prayers as their loved one undergoes yet another shot. Thank you my hubby!

To the child of a person with arthritis who grows up all too soon by taking care of their parent, reversing the traditional caretaker roles. These children, who mature before their time, learn to take on a myriad of adult-type responsibilities. Thank you my baby!

When someone with rheumatoid arthritis like me is surrounded by people determined to live above the illness, an interesting thing happens.

The person embraces this challenge. Connects more. Smiles more. Reaches for newer paths. Holds their care circle—family, friends, treatment team—tighter. Maybe even shares what they’ve learned with others taking their first steps along this journey…like what has been my mission!

KEEP MOVING, TO STAY A STEP AHEAD OF ARTHRITIS.

There are many different forms of exercise to choose from. The type that is best for you will depend on your personal preference, the severity of your symptoms and whether or not you have other musculoskeletal conditions or health issues.

If you aren’t sure which exercises are suitable for you, be guided by your doctor or other health professional, such as a physiotherapist

Getting started is tough for people with arthritis, no doubt about it. But once you become consistent, exercise is self-reinforcing, because it gets easier, you lose weight, you gain strength, you experience less pain, and you feel better emotionally.

Aim to do some form of exercise every day. The exercises you choose should ideally help with:

Flexibility – stretching and range of movement exercises help maintain or improve the flexibility of your joints and nearby muscles. They will help keep your joints moving properly and ease joint stiffness.

Strength – to build muscle strength, provide stability to your joints and improve your ability to perform daily tasks

Overall fitness – exercise that gets you moving and increases your heart rate (such as walking, swimming and cycling) will help improve the health of your heart and lungs (cardiovascular system).

Many types of exercise can help with flexibility, strength and overall fitness at the same time, including:

  • swimming or water exercise classes
  • taichi,
  • walking
  • chair exercises
  • low-impact aerobics,
  • strength training and
  • dancing

The exercise you choose should be something you enjoy and you’re committed to doing. Consider exercising with friends, or in a group or a team environment if you find it difficult to get motivated. I have been personally doing these group classes for the last 5 years and look forward to each one of them.

Sometimes it can be difficult to exercise due to pain. An inflamed, hot or painful joint needs rest, but too little exercise can cause muscle weakness, pain and stiffness. It’s important to find the right balance of rest and exercise.

The trick to not losing quality of life, it is to find a substitute for the activities limited by arthritis. What can you do? Walk, swim, walk in water — anything that gets you moving. The bottom line: As we get older, if we don’t get up and move around as much as we can, then we soon won’t be able to move at all.

If you’re not sure what the right balance is for you, talk with your doctor, physiotherapist for some advice… but keep moving!

 

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Points to remember about Arthritis – Part 2

 

Arthritis is the leading cause of disability in the world. It is not a single disease, but a grouping of conditions that affect joint pain.

There are more than 100 different types of arthritis and related conditions.  While arthritis can affect both men and women, it is most common among women and occurs more frequently as people get older.

Common arthritis joint symptoms include swelling, pain, stiffness and decreased range of motion. Symptoms may come and go and can be mild, moderate or severe. They may stay about the same for years but may progress or get worse over time

Severe arthritis can result in chronic pain and inability to do daily activities. Arthritis can cause permanent joint changes.

These changes may be visible, such as knobby finger joints, but often the damage can only be seen on X-rays.

Some types of arthritis also affect the heart, eyes, lungs, kidneys and skin as well as the joints.

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Mind-Body Practices when Living with Arthritis

I have resorted to Mind-body practices like mindfulness which has helped me to deal with rheumatoid arthritis which usually is accompanied by pain, fatigue, sleep difficulties and stress, among other concerns. By remembering that the body and mind work together, I have learnt to channel this bi-directional (mind influences body, body influences mind) experience towards achieving some stress reduction and improving my overall sense of well-being.

Mindfulness as I have been thought through my special sessions, simply means the focus of the energy of the mind – or focused awareness. The idea is that you focus, aim, and sustain attention. There are many ways to be mindful, but the foundation of all mindfulness is being in the moment.

Mindfulness is the practice of purposely focusing your attention on the present moment—and accepting it without judgment.

Mindfulness has been one of my most powerful tonics on my journey of wellbeing!

Will talk about the tools used in my next posts.

Peaceful moments to all!

Points to remember about Arthritis

 

This is the last week of May-Arthritis Awareness Month, join in the efforts to increase arthritis awareness and encourage someone you know with arthritis to take the leap and engage in safe and effective physical activity programs to improve their physical function and overall quality of life.

Arthritis Awareness Month is the perfect time to share information because it will generate impassioned dialogue among members of our patient communities

My sincere effort in raising awareness is for my story to resonate with the community and inspire my fellow arthritis warriors to live an active life despite an arthritis diagnosis. Yes we can!

  1. Plan ahead.Every single day organize your routines so you minimize movements that are difficult or painful. Listen to your body.
  2. Keep moving.Avoid holding one position for too long. When working at a desk, for example, get up and stretch every 15 minutes. Schedule exercises through the week.
  3. Discover your strength.Put your strongest joints and muscles to work. To protect finger and wrist joints, push open heavy doors with the side of your arm or shoulder. To reduce hip or knee stress on stairs, let the strong leg lead going up and the weaker leg lead going down.
  4. Ask for help.People with arthritis often worry about the possibility of growing dependent on others.
  5. Take advantage of labor- saving devices and adaptive aids.Simple gadgets and devices can make it easier to perform daily activities such as cooking, writing, or even getting dressed. Long-handled grippers, for example, are designed to grasp and retrieve out-of-reach objects. Rubber grips can help you get a better handle on faucets, pens, toothbrushes. Pharmacies, medical supply stores, and online vendors stock a variety of aids for people with arthritis.

 

 

When a Loved one has Arthritis

 

Looking after someone or becoming the carer for someone who has arthritis can be difficult and it can be challenging.

There is a fine balance to strike which involves providing a good level of care but also allowing that person their independence and respecting their wishes about their care.

It’s important to gauge when care is needed and when you can stand back and there will be bumps along the way but you can be sure every day you provide care, will be highly valued.

Understanding Arthritis is important because it not only affects the person with the ailment but impacts every person in their close circle of family and friends. Arthritis is a chronic condition and its impact is a life-long journey.

People with arthritis often are discouraged and say, “My family doesn’t understand”, or “My friend doesn’t get what it’s like for me”. Family and friends are not deliberately trying to misunderstand, be difficult, or seem uncompassionate. They really don’t understand, as they are not in your shoes! Hence awareness campaigns are important.

Suggest certain actions family and friends can take to enhance their understanding.

Understand what arthritis means – what causes it, how it develops, and how it affects people. In the same way that understanding their condition helps people with arthritis to cope with it, the more you understand about arthritis the more you will be able to provide successful care and support.

Communicate effectively. Good communication in both directions is essential. The person with arthritis needs to feel well supported and may also need reassurance that you do not resent the responsibility falling on you. It needs to be transparent.

Offer practical help with the treatment. This may mean helping the person to take their medications or assisting with recommended exercises, activities or therapies that they have found helpful in reducing the symptoms of their arthritis. Continuity is the key.

Support the person as a family member or close friend of the person who has arthritis, ask if you can accompany them to their doctor appointment. This is a way of demonstrating your support and also gives you the opportunity to raise questions and to hear the response directly from the doctor. It is yet another good way to learn and support at the same time.

 

An RA Update

People have long feared rheumatoid arthritis (commonly called RA) as one of the most disabling types of arthritis. The good news is that the outlook has greatly improved for many people with newly diagnosed (detected) RA. Of course, RA remains a serious disease, and one that can vary widely in symptoms (what you feel) and outcomes. Even so, treatment advances have made it possible to stop or at least slow the progression (worsening) of joint damage.

We are all aware our Rheumatologists now have many new treatments that target the inflammation that RA causes. They also understand better when and how to use treatments to get the best effects.

RA is an autoimmune condition, which means it is caused by the immune system attacking healthy body tissue. But so far it is not clearly known what triggers it.

Your immune system normally makes antibodies that attack bacteria and viruses, helping to fight infection.

If you have RA, your immune system mistakenly sends antibodies to the lining of your joints, where they attack the tissue surrounding the joint.

This causes the thin layer of cells (synovium) surrounding your joints to become sore and inflamed, releasing chemicals that damage nearby; bones, cartilage, tendons and ligaments.

Small joints in the hands and feet are most commonly affected. Sometimes RA can affect your organs, such as eyes, skin or lungs

Have been working on ppt presentations on the above – a basic patient awareness version which I have accumulated through my various visits to all the medical professionals through the last 18 years!

Coming soon…

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MAY – My RA Musings:

 

I must admit my websites name is RA Positive Hub…but yes, some days it’s pretty hard to stay positive!

Whenever negative knocks at my door, I make sure my full room is filled with positivity, so there is no place for negativity, these are those difficult flare up days!

As every RA Warrior is well aware, it could be exhausting explaining to people why you’re not working, or why you are not socialising, or why you are not driving and so on…but never give up!

Actually, in my good old days if I heard “but you actually don’t look sick from out you look fine”, I would be upset…

But as time passed and I gracefully learnt to accept my ailment it gave me courage and hope in some of my darker moments. Today I can say all my baby steps on the road to well-being, are counted as my major achievements and have been placed in a better space to manage myself.

We have special months dedicated for ailment awareness…and month of May is ARTHRITIS AWARENESS MONTH.

So, let us go out in full spirit, spread the word and make the world a better place, thereby try to change the community mindset! Awareness is the key as it does not only help to make the lives of Arthritis Warriors much easier but also, if the community at large is made aware of the ailment and a conscious inner awareness can be ignited, they themselves will be on the constant look out for their own wellbeing and their families and automatically become good care givers if they have RA Warriors like you and me in their families!.

Be Positive and Blissful!