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!

 

 

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What were some of my lifestyle changes I had to make as an RA Warrior!

How RA affects my health; it’s as simple as that. My lifestyle choices affect all aspects of my physical well-being, and that includes my joints.  I constantly experience a struggle to determine the right balance of lifestyle habits in order to enhance my quality of life and to try to achieve a normal life, independent of my established RA.

(RA) is a health condition I have realised that has played several different roles in my life. Sometimes it is strong and angry. Other times it can be gentle and in control. It has a way of making surprise visits when least expected. Funnily it has a personality of its own. Keeping RA in check means finding a balance of medications and lifestyle changes that allow me to lead the live I desire.

RA not only influences my everyday life and work, but it also affects my relationships. The condition has an impact on many different parts of my relationships, and influence the roles I assume, the division of chores in the household, mutual family plans and leisure activities. All holidays and outgoings require planning including travel, movies or family gatherings. A few times I had to cancel my trips as I was not feeling too confident of my health.

I constantly find myself balancing between ideality and reality!

As a reminder, I am sharing what worked for me; this does not mean that it will work for everyone. I do not have any medical training other than living with chronic illnesses and pain for 18 plus years, yes but I know more than the new RA warrior who has just been diagnosed!

  1. Staying Active

Exercising for most will be the last thing we want to do when your joints ache, but I have seen through the years that physical activity alleviates joint pain and stiffness, increases joint mobility, strengthens muscles and improves my mental health.  I do at least a small amount of yoga movements every day. I do what I can to make sure the muscles in my body are able to help my joints work well and to protect them from themselves.

My prime mission is I always want my joints and my muscles to remain as strong as possible, hence I keep using them daily. The trick is to use them the right way.

I will vouch that these lifestyle changes, along with my medications, have assisted me in helping to achieve greater mobility and reduced pain.

  1. Always maintain a Healthy Weight

Always concentrating on my BMI and ensuring not to put any extra kilos through the years. As any additional pounds worsens my aches and pains.

  1. Eat a Balanced Diet

Concentrate on foods which assist to fight inflammation, strengthen my bones and boost my immune system. These include foods rich in inflammatory-fighting omega-3 fatty acids like salmon, olive oil; antioxidant-rich herbal teas; fibre-rich multi whole grains and beans; and vitamin C-rich citric fruits. Found myself to be allergic to some foods hence totally avoid them and feel better. Diet -based and lifestyle- based disease management is very hard.

  1. Constantly on the lookout for balanced Vitamin D levels

Avoid vitamin D deficiency as it can worsen existing arthritis symptoms. Not having sufficient vitamin D can lead to a pro-inflammatory result and can cause symptoms to arise or worsen. Hence always control it with regular blood tests and Vit D supplements.

  1. Manage my Stress

I always recognize what causes my stress and divert what I can. Schedule time for breaks, my hot baths, avoid people who antagonize me and give me negative vibes. Negativity is a no-no for me. My daily routine involves relaxation exercises including a few minutes of meditation, deep breathing and guided imagery.

  1. Fighting Fatigue

Resting my body is an important aspect when living with rheumatoid arthritis, especially during a flare-up. Dealing with the day to day pain and stiffness of RA during flare ups can be draining. Fighting fatigue is all about a balance between rest and activity and that is what I am on top of it.

  1. Always try Alternative Treatments along with my Medications

Over the years I have also relied on a combination of lifestyle changes, medications and alternative treatments to control my symptoms and prevent flare-ups. The addition of these changes and alternative treatments have helped to reduce my dependence on drugs and lower the side effects and costs of RA medications. It could be a massage therapy, herbal or essential oils, acupressure, NST, etc, I cannot pinpoint to one single medium, but I have never stopped my medications.

When we take steps to control our RA symptoms, we are at a lower risk of developing additional diseases and permanent damage.

Incorporating all the above into my lifestyle has helped me to not only live well—but thrive—with rheumatoid arthritis.

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Speak our hearts out…….

 

I Just thought ..Let us speak our heart out in these COVID times

Join me, get comfy and have a virtual cuppa coffee with me in these lockdown times.

We all know sometimes you just need a friend, a hug, and time to care for the ‘you’ inside. We understand that arthritis affects lives in ways beyond the physical; it can hurt your emotions, your self-esteem and cause worries too. Too much of the corona virus Stress, Anxiety and Worry talks happening around.

This section is a pure hug in words!

I will releasing small podcasts and if you have your views please respond.

I am working on my website to get it more interactive ..hopefully it gets done soon.

This is all from the heart! Let us give each other some moments of strength in all this uncertainty.

Be safe be happy! Watch out for my next round !