The one where it all began…
Once upon a year ago, two women putting their shaky footsteps on the path of friendship inadvertently solidified their fledging bond over the most unlikely of topics – their aches and pains (and of course, mutton curry). The two women, both in their 30s, were amused (and secretly delighted) to find someone ‘young’ who understood their own battle with chronic health issues, especially ones that translated into aching limbs, throbbing joints and more. Only, in this case, one of the young women happened to mention a condition that the other – a journalist on sabbatical – had never heard about. And what ensued was an attempt to understand this unknown condition better.
The condition is fibromyalgia that Kamini Patel – founder of Nature Therapy and restaurant consultant — struggles with on a daily basis and the one doing the grilling was Rapti Bhaumick, journalist & independent content writer. Here are excerpts from the attempted replication of a very detailed conversation that gave birth to the Fibromyalgia Series in #NTJournal.
How did you realise you have an illness that needs to be understood?
I realised almost 10 years ago, that something is not right with my body. The exhaustion I would feel, the inability to get up and get moving. Initially everyone called me lethargic – but soon I figured that it was not mere lethargy or laziness, because there was a lot of pain.
Deep down there was an instinct, and serious concern, that there was more than what meets the eye. I knew it is not normal to wake up feeling exhausted or to constantly be struggling with severe leg and shoulder pain. The leg pains were so severe in my late-teens that I was never able to stand for very long. I always needed a chair and for this I would be mocked often.
I went to innumerable doctors – orthopaedics, general, neuro, and got countless X-rays, MRIs etc, done, but all told me that everything was normal and I am fine. These doctors were well known, but I believe it’s the lack of deeper questioning and spending time with a patient that was lacking.
Pain started developing behind my ears and TM joint which led me to ENTs and dentists. All came out negative.
Having no choice, I started to search on the internet for reasoning behind the pain. That’s when I came across the terms Chronic Fatigue Syndrome and Fibromyalgia. I started digging deeper and related to all the symptoms and recognised the pattern. The more I read about it the more I was convinced.
It was a tough, hard and long journey to get the correct diagnosis.
A few years ago, I had gone to PEMA wellness retreat where I shared my assumptions with the doctor; he agreed and put it down on paper. It gives me mental peace now that I know what I have, and am able to not get hyper about not understanding the reason behind some of the pains. I’d say it has become easier after almost 10 years of struggle.
So, how would you define Fibromyalgia?
Fibromyalgia is a chronic condition that causes pain in the bones and muscles. The medical community finds the condition difficult to diagnose due to its similarity with other chronic pain illnesses like osteoarthritis, bursitis, and tendinitis. The difference between these conditions and fibromyalgia is in the areas of pain – in the former, you are racked with pain in specific areas, but in fibromyalgia, the pain is widespread. That's why diagnosis is made by the process of elimination. Here's an interesting fact: records show over 90% of fibromyalgia sufferers are women.
What is it like living with fibromyalgia on a daily basis? Is it something that is constantly with you?
Every day is a new day. As I get older, more new pain points are developing. But I am wiser to the disease so I am better at handling the situation and managing the pain. I am also learning to manage the stress in a better way. Lifestyle management is key to battling the symptoms – most importantly, stress levels, sleep and gut health.
How does it affect your daily life – what are the precautions you need to take?
From the moment I wake up, I have to brace myself for how my body will behave for the rest of the day. Precautionary measures that I take are ensuring good sleep, pacing myself in terms of work and play and learning to accept that some days may not be great and to process it calmly.
In general, I feel slow physically. Mentally there are days that I get brain fog. Most of the times, my mind is racing, but my body is unable to keep up and support even menial things like picking up the phone, or getting up to get the remote.
What is the most annoying thing about fibromyalgia that you still struggle with daily?
Not being able to easily move about and have a lot of energy for professional and social activities. Living with fibromyalgia is accepting that there are more times when I have to choose between all of it on a regular basis. I have had to let go of professional commitments, amazing projects and say no to several social events just because I had no energy in me to get up and get going. It’s an effort to even smile at times and perhaps that is why I avoid many social gatherings or public speaking events.
I operate two ventures that are distinctly different – one is consultancy under Kitchen Therapy and also the website, and a retail line under Nature Therapy – I often have wondered if I should reduce the workload, but I am not ready to do that yet. I am fiercely ambitious and enjoy working very hard, despite all the drawbacks.
Another way to cope is that if I know I have worked a lot today, I may need to take it easy tomorrow. It could an all-day shoot or kitchen training schedule that ends with me being in bed for three days sometimes. In recent times, traveling has affected me the most; I take a lot more time to recover even from holidays that I’ve had too much fun on! That’s the thing about fibromyalgia - even excess happiness can trigger pains.
What triggers the maximum pain and how do you deal with it?
There are far too many triggers for me – but perhaps the hardest one to hit is stress. It silently creeps up, and subconscious stress is difficult to pin point or to recognise at that moment directly.
Sleep is crucial for me. One bad night of sleep can affect me up to a week in terms of body stiffness and pain, brain fog and wrist tenderness
Does a daily routine help you deal with fibromyalgia better?
Definitely. How an individual deals with fibromyalgia is completely dependent on their lifestyle, their professional commitments, likes and dislikes and of course, their temperament. But I've found that having a regular routine has helped me with stress management - for the body and the mind which is equally important when one is struggling with a chronic illness. In fact, my day is planned from 5.30am to 9pm, which is when I prefer to slip into bed on most days.
I share more details about my morning and evening routines in the next articles of the series.
Currently, what are your symptoms of fibromyalgia?
- Pain in the hips, jaw, ears, shoulder and neck (which is omnipresent!)
- Sever tenderness in the wrist
- Chest inflammation and tenderness
- Sensitivity to strong smells
- Loss of hearing
- Chronic fatigue syndrome
- Plantar fasciitis
- Pins and needles
- Sin sensitivity to bruising
- Severe skin dryness
- Stress related digestion issues
What are factors that you keep in mind to be self-sufficient?
- No tough doors, locks to help with my wrist pain
- Soft edges of furniture
- Travel restrictions
- Work restriction sin terms of stress and overloading which means cutting down on projects
- Pick and choose where to spend energy
- Lack of social life
- Find and develop hobbies and skills to do by yourself that require more mind than body activity
Have you ever thought about what may have caused fibromyalgia?
The root cause - trauma, emotional distress, or genetic is unclear. But because I’ve had this for so long, I find it hard to pin point an exact cause. I think there were a few points in my 20s that I think could have triggered this into a full-blown attack.
Interviewed by Rapti Bhaumick
The Nature Therapy Fibromylagia Series is my way of spreading awareness about this chronic condition with the hope that it will help others figure out their suffering – from getting a diagnosis, finding helpful tips and suggestions and aim to improve lifestyle towards living pain free. A big part of battling fibromyalgia is feeling alone and not being able to describe what we are going through.
With warm love,
Founder of Nature Therapy