A week of reflection 2020 @rapositivehub.com…..

As I reflect on how the pandemic has impacted my life and the lives of my family and friends, I’ve noticed one critical element missing from the lockdown and safe distance: human connection.

We ask each other, “How are you doing?” But do you think we all are truly looking for a full and candid response? I am not signifying we are being insincere, but perhaps the expression has become more of a virtual salutation than a true concern! My typical response is either “great ” or “good.” I mean it, even when it is not true—which is to say, I’m just trying to be positive and move on……

This makes me wonder, are we bypassing moments to understand how each other is doing and coping with life, particularly in a time when we are confronted with the challenges of existing through a global pandemic?

So now, let me stop and ask the question again: How are you doing, really? And I mean it….

It’s true that I have lost something or the other and you too  —failure to recognize this would be some form of super denial. I have lost our hugs and handshakes,small family & friend gatherings, window shopping, and impulsive walk through the corniches and cities by-lanes!

We all need to be aware that life needs to go on ..and just pondering will not get us to where we need to go..to be simply joyful in the moment  as Arthritic Warriors!

Joy isn’t found in yesterday or tomorrow; it’s found right here, at this moment. Happiness is something we design and create for our own selves rather than being tendered to us by other people or external environments.

Happiness exists on many levels. And as Arthritic Warriors not all are blissful and all-inclusive. Some are tender, some are bittersweet. Some happiness makes you feel like you’re going to burst, while at other times, it slips up on you. The key is to acknowledge your happiness at the moment and look for the little things in life that bring much joy. What it takes is an inner change of perspective and attitude. And that’s truly good news because it’s something anyone can do. when you focus on the present moment, you are much more likely to feel centered, happy, and at peace. You’re also much more likely to notice the good things that are happening, rather than letting them pass by unnoticed.

Honestly, I have never known life to be as tough as it has been during 2020. It’s still hard, and I’d still like very much for it to stop. But I can still experience moments of happiness. Through the 2020 pandemic zone…I had decided to intentionally put less energy into counterattacking change and more energy into fully engaging inside my moments, finding “the happy” whenever I can.

Who knows where I’ll find it next? It might be during a walk or a conversation, inside a movie, or a song. Or, it could simply be sitting on my kitchen counter, brewing a slow cooker broth waiting to be turned into a delicacy!

As Arthritic Warriors, I believe there are big-time benefits for finding simple moments of happiness in each day, in light of the challenging times we are all facing together……rapositivehub.com

ARTHRITIC WELLNESS ..YOU & ME…. SMALL TALK SERIES…

People with many different relationships use small talk. The most common type of people to use small talk are those who do not know each other at all. It is also common for people who are only acquaintances, often called a “friend of a friend”, to use small talk. Although generally thought of as surface-level, small talk can be crucial when it comes to establishing connections and relationships. In the current Covid 19 “new world of communication ” in particular, the gift of small talk can greatly enhance a community enthusiast’s networking opportunity and use this platform for spreading awareness and sharing other related topics. Hence, I resorted to setting off these series on..

                          Arthritic Wellness: You & Me

Tune in for next small talk series…until then…

Not all of us can do great things…but we can do small things with great love…Mother Theresa.

 

 

ARTHRITIC WARRIORS NEED TO LEARN ….TO RIDE THE WAVE OF GRIEF……BE IT PAIN OR A PERSONAL LOSS!

With the peaceful passing away of my Iron Lady..my Mom this week..I had a flashback of memories related to my diagnosis phase and the journey till date, which I felt like sharing…and could be an inspiration to all!

I clearly remember the day I was diagnosed with RA the first thought was how I am going to disclose it to my Mum! I knew she would be disturbed and never be able to accept it.

I remember when it was the day of her weekly visits to my place, I ensured that if I had my pain on that day I would take extra pain killers so that I am her “normal daughter”.. super active and healthy! There were times she would sense my lethargy but I would camouflage it by watching a serial with her and siting put…so she does not see me in pain.

Yes this went on for some months but I guess, the truth had to be told and after a few months Mum was made aware that I have RA…not really that she understood the intensity of the disease and her first reaction was no one in the family has Arthritis how come you? One of the main reasons was because she thought Rheumatoid Arthritis is thought to be an ‘old person’s disease’ and usually asked questions or comments like ‘but you look so healthy’ or ‘you are so young, you couldn’t possible have it’.

I continued going to office only to find out one fine day that she opted to come to my house and do the basic cooking and tidying my place and gone back to her home. This continued daily and it went for months, she only stopped the daily visits once she saw me much better after the medications set their results in me. That’s the unflinching support she surrounded me with in my difficult days! And all this was without much ado…it was her sheer unflinching support that took me through this journey! She continuously introduced me to naturopathy and other modalities of home-made medications, as she felt the side effects would be less as any mother would experience. Thank you mama..

Yes, I do remember there were days when I had to try to hide the full symptoms and problems it was causing and ‘put on an act’ until Mom got out my own front door.  It hurt but I felt good that my mum is not disturbed. This went on for years and it was funny but when she experienced a little bit of body pain she used to just blurt out and say….Hey just pass me your Voltaren !!!

As years passed and she spent some time with me did she realize what impact the disease was having on me. But I will always appreciate the encouragement and support from Mom that helped me get over my own shock at the diagnosis. Her weekly visits were full of activity like shopping my groceries, cutting and chopping my veggies for the week, doing the laundry and lots of other chores. She was a super active person.

She would always say celebrate the strength of this illness what it has given you and shaped you into today. Don’t focus on what you can’t do, but what you can.

She was one of my unsung hero in my RA journey  ..Mom was a part of my Patient Advocacy entourage…she always attended my Arthritis Awareness Sessions , Walk for Arthritis , World Arthritis Day and so on… Thank you Mom for being there for me in all phases of my life…

I pray that all Arthritic Warriors are blessed to have a Mom like you ..will miss you Mom

C.S. Lewis said it well. A loved one’s “absence is like the sky, spread over everything.”

Fatigue ..is just one of the symptoms ..it does not define you! So work on it…

Does this sound familiar?  You are all set to go to work but somehow feel too exhausted to even move an inch, or just slept without eating as no energy to even make some brunch!

Yes…this is fatigue which has not been easy to measure and conceptualize for Arthritic Warriors as the consequences permeate every sphere of life.  Fatigue is different than normal feelings of tiredness. People describe it as being overwhelming and uncontrollable. They feel worn out and drained of energy, and sometimes even lose all interest in anything.

Reasons I have been told by various doctors could be due to inflammation/swollen tender joints, pain, depression, anxiety, anemia, thyroid problems (hypothyroid conditions), infections, certain medications, sleep problems (lack of sleep due to insomnia), sleep apnea, work schedules or lifestyle, low levels of Vitamin D etc…overall all related to RA condition.

The unpredictability of RA-related fatigue is dominant, pervasive and is experienced as a vicious circle, which can be described in relation to its physical, cognitive, emotional and social impact. Over the years as mentioned earlier the spoon theory is an important tool I have been using to manage my fatigue.

I usually pace myself, avoid going overboard on my daily body limitations and listen to my body. There is a great deal that can be done to reduce fatigue and you may need to try different approaches before you find a combination that works for you. As the inflammation that causes the symptoms is brought under control and as you adapt to the disease, fatigue should become less of a problem. But it goes without saying serious hard work and dedication is required.

Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. How do we help ourselves? If you think your drug treatment may be causing your fatigue, talk with your doctor about reviewing your treatment in case certain drugs are causing drowsiness. They can also look for signs of other conditions that may be causing fatigue and check your inflammation or anemia levels when you are doing your regular tests.

I’ve learnt over the years that I can do more as long as I have proper rest breaks. I can actually fit more into a day. Earlier I just went headlong into something and then hit a brick wall.

‘Now I have the confidence to turn and say, “No, that’s beyond what I’m prepared or able to do.”’ Reduce your physical reaction to stress through relaxation so that you feel more able to cope with things you find stressful. Take time for yourself – read a book or have a warm bath, for example.

In my earlier days when RA non-acceptance was at its peak… my RA put various social roles under undue pressure in general, both in the family, among friends and in the wider social network. I put a lot of emphasis on my work life as I felt it affected my identity, social relationships and the sense of normality in my daily life.  After I slowed down and took to patient advocacy role, I have seen women with RA give the highest priority to their professional identity and compromise their leisure time and family time where RA-related fatigue bears the greatest impact. Agree it all boils down to your current economic well being too, but personally out of experience I feel we need to introduce a good blend of both worlds.

The effects of the disease can also change how you see yourself, as well as your role in your relationship, family or at work. Mutual give-and-take is often an important part of friendships and family relations. But rheumatoid arthritis can make it harder to continue to care for others – and may also mean that you need more and more help yourself. Fatigue can affect relationships because it becomes more difficult to carry out plans you make together. Personally I go through such moments and its sometimes get difficult to time and  again explain your condition to people as it sounds like a stuck record! But nevertheless this attitude does not affect me as by now I have learnt to get adjusted to my surroundings and the responses!

We should avoid struggling to manage our fatigue with little professional support, or perceive it to be dismissed, or assume it cannot be treated and that we must manage alone. Being aware of  how fatigue presents in your life allows you to better plan and cope. Friends and family may want to be there for you too, but often don’t know what to ask.  I keep on mentioning that it’s okay to say, “This is a bad day, is there any way you could help with the dishes (cooking, cleaning, laundry, etc.)?..Go out and get help.

Cognitive behavioral therapy (CBT) strategies can also be learned to help cope with fatigue. Some involve recognizing and then changing certain thoughts, beliefs and behaviors that make it more difficult to live with the disease.

Lastly, be gentle to yourself.  As mentioned earlier…Fatigue is just one of the symptoms, it doesn’t define you. There is  a lot more to you then this fatigue syndrome…so go all out and try and work on it…and yes.. you can if you want to!

Stay Safe ..Stay Agile!

MY RA FEET…HAVE FOUND MY SOLE MATE! SOMETIMES SORE BUT HAPPY FEET..AS THEY ARE ABLE TO WALK ME THROUGH !

 

How does rheumatoid arthritis affect how people see themselves? Topic for July @ RAPositivehub.com  

In this series of article, I will share my side of the Arthritic Warriors Foot Wear predicament.

When you have RA your footwear choices can make a big difference. Over the years I have realized that healthy choices for your feet is like having nutritious diet or getting regular exercise which adds up to big improvements in quality of life… My foot wear mindset is like I think of my shoes as a tool that can modify to help minimize pain and maximize my ability to get out and do things.

Wrong foot wear are not only uncomfortable but they aggravate joint problems, bunions, hammertoes, even further.

For people with conditions that affect the feet such as Rheumatoid Arthritis, the right footwear is essential to maintaining function, resting symptomatic joints and preventing or limiting our structural foot problems.

We are all aware each foot has more than 30 joints. Arthritis that affects any of these joints can make it difficult — and painful — to walk.

Just a bit of concise medical description from an arthritic warrior’s window collated from various workshops I have attended.

RA affects the smaller joints such as the fingers and toes first, so feet are often one of the first places to be affected. Symptoms usually strike the toes first and may then affect the back of the feet and the ankles. The joints may enlarge and even freeze in one position, so they can’t extend fully. During my flareups my small toe sometimes is so painful and inflamed that even a whiff of air that passes by can make me scream…during these times I wear thick and cushioned socks thereby covering it from external pressure and it works for me.

The metatarso phalangeal joints  are often affected (where the long bones of the feet meet the toes), and can result in Hal lux vagus (the big toe is angled excessively towards the second toe) and hammer toe deformities (the toes curl up in a claw-like shape). Each of these deformities can cause further problems, for example, if you have hammer toes, you’ll be more likely to develop corns on the tops of your toes.

If the joints in the middle of the foot are affected, the arch can collapse leading to a flatfoot deformity and spreading of the forefoot (where the front section of the foot becomes wider). The fatty pads on the balls of the feet may slip forward, causing pain on the balls of the feet and backs of the toes. If this happens, it can feel as if you are walking on stones. During these days I am always moving around the house in my double padded house slippers.

If the joint where the heel bone meets the ankle (the joint that lets you rotate your ankle) is affected, it can lead to a condition known as vagus hind foot (where the heel bends outwards), making it difficult to walk.

Finding a safe and comfortable environment for your feet is not always as easy as you might imagine. I have always noticed selecting shoes can be quite difficult when you have rheumatoid arthritis: A lot of stylish shoes aren’t an option because they don’t fit right or you can’t put special insoles in them. I am always on the look for deep and broad shoes that can be secured on to my feet with Velcro’s and straps. Deep and broad shoes as feet can swell and have a flare up anytime. I also, consider avoiding shoes with laces. RA flare ups sometimes leave hands swollen making it difficult to tie shoes.

Velcro, elastic shoelaces and zips fastenings these become easier to do up. There are also many devices to help put on shoes and do up fastenings.

For some of us with sickness, pain, or mobility issues, fashion can be scary, and it can sometimes be bleak. There have been times in my journey with rheumatoid arthritis , where fashion and I found ourselves at odds with one another. In my corporate career days, I saw an automatic change in my footwear once I was diagnosed with RA, to all the comfortable shoes without laces or just Velcro bound… I have not regretted my stilettos era …just accepted my new footwear era!

I have gone through all this with a smile and with me there was an acceptance of the condition hence it became a cake-walk to walk! I constantly am on the lookout for comfort and pain free foot wear rather than the look and fashion and have found my SOLE MATE in various shapes and designs.

To summarize I would say we need to realize as Arthritis Warriors, our feet provide support for our entire body and are the first things to go forward when we move in any direction. They take us everywhere, so it is best for us not to neglect them. Take care of your feet by putting them in the best foot wear for rheumatoid arthritis.

Let us step out in the right direction….

 

 

 

 

 

 

 

The spoon theory that has helped navigate my RA journey!

 

Today I am going to share a known arthritic toolkit…the Spoon Theory and how it has been an indispensable part of my RA journey.

In one of the early workshops I had attended on Pain Management I was introduced to the SPOON THEORY, which most of you must have heard about it. This was the analogy that was first introduced by Christine Miserandino in 2003. It was just a year after I was diagnosed with RA!

The Spoon Theory has been circulated worldwide since Miserandino first shared it. Many people now call themselves “spoonies” and our warrior tool is the spoon!

Personally, When I was introduced to this concept, I was grateful. Finally, I felt I had a way to explain my endless fatigue to my extended family, friends and office colleagues. Sometimes it is hard to express our feelings. Finding the right words to describe our feelings can be just as frustrating as the feeling itself. With this theory in mind, positive communication while promoting our own self-care can be as simple as ‘spoons’.

I speak at various conferences and workshops and many ask me to describe what a typical day for me is like, and I immediately say, “Have you heard of the Spoon Theory?”. I recapitulate it for them and tell them to surf and find out for themselves. What I experience is immediately the audience is able to relate to it …and they share a statement saying “Oh really. Now, I get it.”!

Normal people begin their day with limitless energy levels, that they are raring to go. Whereas Warriors like us have our own daily limitations.

The minute my eyes open in the morning a visual body Xray is done and I am aware of my energy and pain levels which I equate it to how many spoons I have.

I normally assign 12 spoons for a day, which in normal times without a flare up, covers up my basic routine activities.

On a flare up day my basic activities become a real struggle and need meticulous allocation of my energy spoons. By doing this simple allocation in my mind I have visually charted the course of my day. Hence the feeling of helplessness or frustration is on a very low scale as predetermined activities that can be attended to are taken care of on priority basis.

My daughter will always check with my spoon levels for the day. And without saying anything just by the number of spoons I mention, she understands how my day would be and accommodates her presence and involvement around me through my day!

Each activity I need to attend to is given the number of spoons by assessing my pain and feelings accordingly and the rest are carried forward for the next day!

It has been my indispensable partner on this journey ..thank you my one dozen spoons !

Be a Happy Spoonie and pace up your lives as per your daily spoons!

Next update on how I pace myself for a day and the thought process behind it! See you soon….

 

 

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!

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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!