Unmasking the Unseen Struggles: Navigating Employment Challenges with Fibromyalgia

Living with Fibromyalgia presents a unique set of challenges that often makes consistent work difficult. The unpredictable nature of chronic illness symptoms adds an extra layer of complexity, making it challenging to maintain a regular work routine. In this blog post, we'll explore the hurdles faced by individuals with living Fibromyalgia, discuss potential job opportunities, and shed light on the isolation and misunderstanding that often accompany this chronic illness.

The Unpredictable Struggle: Fibromyalgia and Work

Living with Fibromyalgia introduces individuals to a complex and often unpredictable landscape where symptoms fluctuate on a day-to-day basis. Symptoms such as chronic pain, chronic fatigue, insomnia, stomach and bowel problems, sensory issues, headaches and cognitive challenges create an unpredictable landscape for those trying to hold down a job.

Chronic pain, a hallmark of Fibromyalgia, can manifest differently each day, affecting various parts of the body and intensity levels.

Chronic fatigue becomes a constant companion, leaving individuals drained and exhausted despite rest.

Insomnia further compounds the challenge, disrupting sleep patterns and contributing to the relentless fatigue. The cumulative effect of sleep disturbances intensifies the struggle to maintain focus and productivity during working hours.

Stomach and bowel problems add an additional layer of complexity, as digestive issues may fluctuate, impacting comfort and concentration.

Sensory issues heighten the sensitivity to stimuli, making a typical work environment potentially overwhelming. Bright lights, loud noises, or even the texture of clothing can trigger discomfort or pain, requiring individuals to navigate their surroundings cautiously.

Persistent headaches add yet another layer to this intricate puzzle, affecting cognitive function and making it difficult to concentrate on tasks.

Cognitive challenges pose a significant hurdle for those with Fibromyalgia. The so-called 'fibro fog' can manifest as memory lapses, difficulty concentrating, and challenges in processing information. This cognitive cloud further complicates the already demanding task of maintaining a consistent work routine.

The struggle to uphold a predictable work routine is a multifaceted experience that extends beyond the physical symptoms. Often, this struggle remains invisible to others, contributing to widespread misunderstanding and isolation. The unpredictability of symptoms means that what might be manageable one day becomes an insurmountable challenge the next. This inconsistency can lead to missed workdays, increased stress, and a sense of frustration for individuals striving to navigate both their professional and personal lives.

The invisible nature of these struggles is a key aspect that frequently leads to misunderstanding. Colleagues and employers may find it challenging to comprehend the ever-shifting nature of Fibromyalgia symptoms, contributing to a sense of isolation for those managing their chronic condition. Raising awareness about these unseen challenges is crucial in fostering understanding and empathy in the workplace and beyond.

Ideal Jobs and Entrepreneurship Opportunities for Individuals with Fibromyalgia

Despite the unique challenges posed by Fibromyalgia, there are jobs opportunities and entrepreneurship paths that can be more accommodating for individuals with Fibromyalgia. Consider roles that offer flexibility, such as remote work or positions with adaptable schedules. Freelancing and entrepreneurship also provide a platform for individuals to create a work environment that suits their unique needs.

Embracing these options can bring about a range of benefits that enhance the overall well-being of those with Fibromyalgia:

1. Flexibility for Health Management: Remote work and positions with adaptable schedules provide the flexibility necessary for managing health effectively. Individuals can tailor their work hours around periods of lower pain or fatigue, allowing for better self-care and improved overall health. 2. Reduced Commuting Stress: Remote work eliminates the need for daily commutes, reducing the physical and mental stress associated with traveling to a physical office. This can be especially beneficial for individuals with Fibromyalgia, as it minimizes exposure to environmental triggers and preserves energy for more essential tasks. 3. Personalized Work Environment: Entrepreneurship and freelancing can empower individuals to create a personalized work environment that caters to their unique needs. From choosing a comfortable workspace to controlling sensory stimuli, having autonomy over one's work environment contributes to a more manageable and supportive setting. 4. Pacing and Prioritizing Tasks: Entrepreneurship allows for better control over workloads and deadlines. Individuals can pace themselves, prioritizing tasks based on their energy levels and focusing on what matters most. This autonomy helps in avoiding burnout and managing symptoms more effectively. 5. Opportunities for Rest and Recovery: Entrepreneurship often enables individuals to integrate periods of rest and recovery seamlessly into their workday. Whether it's taking short breaks to stretch or incorporating relaxation techniques, having control over work hours allows for a healthier balance between productivity and self-care. 6. Enhanced Job Satisfaction: Engaging in work aligned with personal interests and passions, a common aspect of entrepreneurship, can contribute to increased job satisfaction. This positive connection with one's work can have a profound impact on mental well-being, serving as a source of motivation even on challenging days. 7. Community Support in Entrepreneurship: Joining entrepreneurial communities provides a supportive network of individuals who understand the unique challenges of managing a business while dealing with Fibromyalgia. This shared experience fosters a sense of community, encouragement, and shared knowledge. By exploring roles that offer flexibility, considering entrepreneurship, and embracing opportunities that align with personal well-being, individuals with Fibromyalgia can not only navigate the challenges of employment but also create fulfilling and sustainable careers that contribute positively to their overall quality of life.

The Isolation of Chronic Illness

Living with Fibromyalgia can be isolating. The inability to consistently engage in social activities or maintain regular work hours can lead to a sense of detachment from the world. This isolation is further intensified by the lack of understanding from those who do not grasp the intricacies of living with a chronic illness.

Addressing Misunderstandings

One of the prevalent misunderstandings surrounding Fibromyalgia is the assumption that if someone is not working, they must not be suffering. This blog post aims to bridge that gap by providing insights into the daily struggles faced by individuals with Fibromyalgia, emphasizing that the inability to work consistently is not a reflection of laziness but a consequence of the unpredictable nature of the illness.

In conclusion, living with Fibromyalgia involves navigating a multitude of challenges, particularly in the realm of consistent employment. By shedding light on the unseen struggles, exploring adaptable work opportunities, and addressing common misunderstandings, we hope to foster a greater understanding of what it truly means to work while living with a chronic illness.

Useful Resources and platforms that offer support, information, and opportunities for individuals dealing with Fibromyalgia and Chronic Fatigue Syndrome, particularly focusing on entrepreneurship and work-from-home opportunities:

United Kingdom:

• Fibromyalgia Action UK
• Arthritis Research UK
• Disability Rights UK
• Access to Work (UK Government Scheme)
• The Centre for Entrepreneurs (CFE)

Europe:

• European Network of Fibromyalgia Associations (ENFA)
• European Agency for Safety and Health at Work
• Europass - European Centre for the Development of Vocational Training

United States:

• National Fibromyalgia Association
• Arthritis Foundation - Fibromyalgia
• U.S. Department of Labor - Office of Disability Employment Policy (ODEP
• Small Business Administration (SBA) - USA
• SCORE - Mentors to America's Small Business

Work from Home Opportunities:

• FlexJobs
• Remote OK
• Upwork
• Freelancer
• Virtual Vocations

These resources cover a range of topics from condition-specific information to entrepreneurial support and work-from-home opportunities. Always ensure to verify the credibility of any platform or resource before engaging with them.

Coronavirus: Living with A Disabling Condition & Excluded From U.K. Government Covid-19 Measures

It has now been over two months since the Government imposed U.K. Lockdown and limited Online Supermarket Shopping accessibility to only people at increased risk of severe illness from Coronavirus (COVID-19). To date, I do not believe that serious consideration has been given, or discussed in a wider context concerning people living with disabilities (regardless of health conditions). I am a long term chronic illness Fibromyalgia warrior and someone classed as living with a disability (disabling condition). 

I also writing this blog post in recognition of Fibromyalgia Awareness Day and Mental Health Awareness Week which are significant days for most people, living with disabilities, whether it be physical or mental health related conditions.  

Given the opportunity, I would ask the U.K. Government the following questions for further consideration and clarification;

1. Why people who fall under the protected Equality Act 2010 laws have not been considered to date as a group at risk in the UK Codvid-19 Risk Assessment Response Measures? Especially in relation to empowering and enabling disabled people to still access online supermarket shopping as basic human rights necessity. At least giving the option for this category of people to have the accessibility rights to access online shopping. Taking into consideration that most of us prior to the pandemic would have relied on this easy online access and means of shopping for necessities as part of our daily independent living.

2. When will people living with disabling conditions be included into further serious consideration and discussions of “people at potential risk category,” within the U.K. Government’s wider communication and approach to public risk reduction measures? For instance, people like me who are living with invisible disabilities and incurable long-term chronic health conditions who have to self-isolate, or take extra-precautionary measures healthwise to minimise the risk of being infected with Coronavirus.  

3. Is the government aware that by excluding this group of people further, there are further financial risks and well-being pressures impacting these group of people? 

Ever since the U.K. Government imposed lockdown, online shopping access and additional financial support measures, I have felt as though I should be grateful for all the special measures which have been implemented, so far in the best interest of the majority of people. Additionally, to be grateful that I still have access to alternative online shopping means, even if these new means are more expensive than before. 

On the other hand, I have started to feel more disempowered and restricted in the ability to freely access online supermarket shops the longer the lockdown has gone on. Being excluded from some of the key government measures has also meant that additional financial pressures have started to occur for some of us, due to having to find alternative and more expensive means of online shopping.

These limitations and imposed restrictions feel as though my equal rights to easily access essential livelihood and basic necessities have been stripped away. Making it harder for those of us who must self-isolate, to find or rely on other means of being able to access necessities we need. Further, consideration has not been given that not everyone will easily have the capability to access new alternative ways of finding necessities especially in the absence of family, friends, and neighbours to assist. 

It has also not been considered that it can be difficult for some people living with disabilities to ask for help, due to numerous factors. This is especially if you are used to have some of independence, it is not easy to been seen as being vulnerable and dependent on others. Others who might be strangers, even if they volunteer to provide a service on your behalf.

Overtime, I have increasingly become disillusioned by the U.K. Governments (England) approach in its application of risk management measures, which has excluded people like me, who are living with disabling long term chronic health conditions.

It was a reminder for me of how far U.K. Government still has to go before invisible and long term disabling chronic health illnesses such as Fibromyalgia are taken more seriously and recognized equally as disabling and incurable conditions. A disabling condition which has limited most people like me from being able to live ordinary lives and limited our capability to work in ordinary work conditions. 

The current pandemic has not made things easier, only shown how equal opportunities can be easily disregarded for some protected groups. According to the U.K. Government website their social distancing measures focus on people who are who are understandably so, “at increased risk of severe illness from Coronavirus (COVID-19). I do not dispute this fact and serious measure that has been implemented. My concern is the long term well-being effects limiting access for disabled people has, especially those who have underlying health conditions as well. Even though they may not be as high risk, there can still be adverse and costly impacts our lives in the short or long term.

The groups they have included include the following groups of people; 

1. aged 70 or older regardless of medical conditions)
2. under 70 with an underlying health condition listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds):chronic (long-term) mild to moderate respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
3. chronic heart disease, such as heart failure
4. chronic kidney disease
5. chronic liver disease, such as hepatitis
6. chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes
7. a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets being seriously overweight (a body mass index (BMI) of 40 or above)
8. those who are pregnant

Sadly, the list above does not include people with disabilities (regardless of medical conditions) and those of us who would struggle to undertake ordinary activities such as going to the supermarket due to physical impairments/limited physical ability and the adverse health impact of having to stand in queues for prolonged periods.

Additional further consideration has not been given that within this category of disabled people, some of us have underlying health conditions and compromised immune systems, which does not necessarily fit in the above U.K. Government guidance. It excludes, people who also must self-isolate to minimise potential risk of being inflicted with coronavirus or people who would ordinary be housebound most of the time due to living with disabling health conditions.

The current pandemic has restricted most of us further from exercising our equal right opportunities and easier equal accessible means to help us maintain our independent living and overall well-being. Some of us that were able to occasional obtain self-employment have also been excluded from new self-employment government grant as we do not meet the threshold, thereby being inflicted by secondary livelihood challenges.

Over a couple of weeks ago, I heard the Boris Johnson, U.K. Prime Minister mention people with chronic health conditions in the category of people at risk, who should continue to remain isolated, or take certain extra precautions. This was when he along with U.K. government decided to change the U.K. Lockdown measures, from "Stay At Home," to "Stay Alert." Although he mentioned people with chronic conditions, this was not clarified or specified at to what type of conditions he was referring to. I can only assume based on the U.K. Government category of people at risk, he was still referring to people with high risk health conditions.

What has not been considered is that most of us relied on being able to independently shop online with major supermarkets, as our means of independent living and reasonable financial livelihood. 

The other factor that has been forgotten under the new "Stay Alert," policy is that most of us our lives won't change that much, even though we have been granted the right to go out as often as we can. Most of us will still continue to avoid Supermarkets and Crowded Areas for different reasons, in order to maintain our well-being safely.

The current measures are not practical for most people living with chronic and disabling conditions. Here is why;

I live with a chronic disabling musculoskeletal widespread pain condition known as Fibromyalgia and Chronic Fatigue Syndrome.“Musculoskeletal pain affects the bones, muscles, ligaments, tendons, and nerves. It can be acute (having a rapid onset with severe symptoms) or chronic (long-lasting).” Aside from these musculoskeletal pains, people also experience other numerous ailments which including cognitive issues. – Mayo Clinic

What hasn’t been factored into the government new conditions is that most people who live with a chronic pain condition such as Fibromyalgia in the absence of other underlying high-risk conditions are not able to stand in one position for prolonged periods at time, such as waiting in long queues at supermarkets to buy food. Standing, or walking for prolonged periods than expected does trigger muscle stiffness and chronic pain widespread pain. For some this can lead to mental health related conditions, as result of being stressed (i.e. depression and anxiety). No one wants to voluntary live with severe chronic pain or other illnesses, especially in circumstances where it can be reduced. Anyone living with chronic pain, will tell you that prolonged periods of pain induces sadness, which can then escalate into other ailments.

This then rules out the opportunity for someone living with Fibromyalgia to be able to physically go to supermarkets. There also has to be further consideration given to the current climate, there are longer queues at most supermarkets due to the implementation of physical distancing measures. The whole process of shopping takes longer than it would was before.

Additionally, most of us who fall into the category of people with compromised immune systems and additional underlying conditions, who must self-isolate, have not been included in the priority of people needing access to online shopping necessities.

Nor have the people with disabling conditions with low risk health conditions who can physically go to the shops, been given further consideration in equal accessibility rights at supermarkets. For instance, suitable times, they can go into the supermarket, whereby they can go and shop briefly without having to aggravate, or impact their well-being adversely, as a result of having to wait with lots of people.

I am also someone as a case in example, who became inflicted with severe coronavirus symptoms, which took me seven weeks to recover from due to my compromised immune system and flare up of my underlying chronic health condition. Fortunately, I was able to recover and did not have to go into hospital. Thankfully, I was informed by Emergency Medical Service, it was safer for me to recover from home due to protect my compromised immune system. To date there is no medical or scientific confirmation, that I will not be re-infected again with coronavirus symptoms, therefore I have to continue to self-isolate. Regardless, I would not be able to access supermarkets in the current conditions we are living in.

We have been asked to reach out to neighbors and families that can help. At the same time, these measures only work short term.

• Living with a chronic condition already feels disempowering and disabling. Especially when you are placed in a position where you must rely on someone else in some cases strangers in the absence of familiar assistance.

• There are no mental health benefits in asking for help over a prolonged period. One can also start to feel guilty about potentially putting someone else at risk by asking them to do you a favor. 

• Not everyone is the position to reach out to people who can help them when they need to. Or they might be surrounded by other people who are potentially at high risk as well. Or surrounded by people who also must self-isolate.

• Most of us only qualify if at all for Universal Credit only and not Personal Independence Payment (PIP), because our condition is not considered “disabling enough.” Nor do we meet the threshold for self-employment grants, due to limited capability to work on a regular and consistent basis. Or we have stopped receiving new work self-employed work opportunities.

The challenge here is over a short-term period these measures work where certain liberties and freedoms work in the best interest of the everyone. Over a prolonged period, the current U.K. Government measures will not work and will start to impact the overall well-being of most people.

Based on my own personal experience and journey so far since the lockdown, I feel more disempowered than I have felt before. I am in the group of people who have been forgotten about, left behind, and excluded by U.K. Government new measures. I do not fit in the low, or high-risk group category. I cannot afford the luxury of being able to go out without worrying about the potential high risk of being inflicted again with coronavirus system. Nor, do I fit the category of someone who is sufficiently physically able to undertake ordinary activities such as going to supermarkets and queuing up, without aggravating my chronic health condition symptoms.

To conclude, I feel as though once again in the wider U.K. Government Communications and approach certain equal liberties for people living with disabling and incurable conditions have been disregarded from equal opportunities and accessibility rights. Social and physical isolation alone is mentally challenging to adjust. When you add other liberties such as your livelihood being taken away, or limited it becomes much harder to manage well-being over a prolonged period.

I do appreciate that there are serious concerns for people who are at increased risk of being impacted by coronavirus. At the same time, I believe that further consideration and measures by the U.K. Government should have been considered for people in my category.

We are a group that still wants to continue to access our independent living rights of being able to supermarket shopping slots online. 

This is also keeping in mind that most of the people who are at high risk do receive government food boxes. Therefore, there should be further consideration for some online delivery slots to be opened to those of us who have had to self-isolate and those of us with disabling conditions, who are limited from engaging in ordinary activities.

Our civil and equal liberalities were implemented for a reason in the U.K. This was to ensure that there was equal access to services to everyone. This is the reason, I have chosen to write this blog post and to no longer remain silent.

Corona Virus: Reasons Why Someone Living With Fibromyalgia & CFS Might Be Worried

This blog post is based on my own personal experience as someone living with Fibromyalgia plus other medical condition such as Costochondritis, Chronic Fatigue Sydrome , Hypothyrodism and a Compromised Immune System. My views also take into consideration similar concerns, I've heard or seen from people like me in the Fibromyalgia and CFS Community. Consisting mainly of people who have compromised immune symptoms aside in addition to Fibromyalgia. 

For the first time ever, following the public announcement from Boris Johnson (U.K. Prime Minister) and Sir Patrick Vallance (Government Chief Scientific Adviser) yesterday; I have a better understanding of the significant impact Corona Virus could have on people at risk and the economy. The serious impact that is now being considered is for the high risk and vulnerable people who could potentially be adversely impacted, as a result of coming across someone who has the virus. 

From the beginning my main concern has been the adverse impact corona virus could potentially have on me as someone with living chronic illnesses, such as Fibromyalgia with other additional underlying medical conditions. Also, for people who are considered to be at high risk and in need of urgent medical care. 

I have been astounded especially by people who consider themselves to be well and healthy, have been over buying and stock piling food, toilet tissues and hand sanitizers without serious consideration on the potential impact of the most vulnerable and high risk groups in their community. Mind you, I am not including myself yet, in the most vulnerable group (even though my condition is disabling and debilitating).  

What has been highly concerning for me from the beginning of the new of Corona Virus developments has been the lack of information on the potential impact for people living with Chronic Illnesses. 

Understandably, the highest priority and focus for the U.K. National Health Service and Government is for the high risk groups; the elderly and those in hospital. 

My other concern is that at some point we "the vulnerable group," may be left behind and not considered seriously as a group category to include in special measures when the time comes. This has been the normal approach and attitude that most people in the Fibromyalgia Community experience when it comes to serious issues impacting on our health and financial support from government. Most people, including myself continue to experience on going and much harder times in trying to prove how sick we are. At a local level (GP's Services) and national level (Government). Reason being is "we look well," this is the challenge of living with an invisible chronic illness. 

Here are my thoughts:
1. As Fibromyalgia and Chronic FatigueSyndrome is often not taken seriously as a debilitating chronic illness already by most Medical Professionals, Government Officials and Local Communities Officials, how we will fair during the most challenging times? This excludes Specialist Health and Government professionals who are well informed about Fibromyalgia (which is a small number). It remains to be one of those invisible conditions that is excluded from the category of being a serious chronic illness which adversely affects millions of people. 

The following quote from Fibromalya Action U.K demonstrates some of the challenges, people with chronic illnesses such as Fibromyalgia experience; 

"FMA UK have worked to improve training content that people working at the DWP use when considering people that are diagnosed with fibromyalgia. Therefore, we are shocked, dismayed and angry that there appears to be a culture of intolerance towards people with disabilities and specifically fibromyalgia. It certainly explains some of the stories that we receive on our helplines about people being mistreated at assessments. To hear from Charlotte within the DWP talking about the "cynical attitude" and them "not being empathetic towards certain illnesses." However, it was really shocking to hear comments like "another claim of fibromyarse." This is not acceptable on any level and is clear discrimination." 

2. Most people living with Fibromyalgia have compromised immune systems, due to other conditions they either had prior to, or after they were diagnosed with Fibromyalgia. The condition alone of Fibromyalgia is debilitating on its own and is made worsened by other diseases and viruses such as the Flu Virus. I also have an autoimmune condition known as Hypothyroidism and previously suffered from adverse impacts of Seasonal Flu's such as Bronchitis (stretching over a three year period).

3. Fibromyalgia symptoms mimic flu like symptoms. Some of us still do not know how we will be able to distinguish between Fibromyalgia versus Corona Virus Symptoms. Including when would be the most appropriate time to contact Health Services. Some of us may also be at risk of delaying contacting Health Professionals for various reason, thereby worsening our symptoms. 

4. People like me are more vulnerable to flu and pneumonia symptoms and on top of that we have the added pressure of potentially having to deal with Corona Virus. Most of us have been able to rest assured with having the option to be protected against preexisting seasonal flu viruses. Flu alone for me triggers a flare up, or chronic fatigue symptoms, plus other ailments which impede on cognitive and physical functioning. My symptoms including sensory and nerves are more heightened and feel worse than they would normally in a healthier person. 

A significant flare up at its worst means experiencing more severe musculoskeletal wide spread pain all over the body, which impacts on muscles, bones, ligaments, tendons and nerves. The adverse impact potentially means becoming immobile for days, weeks or months. Then there are the cognition issues, such as Chronic Fatigue, Insomnia, Sensory Overload and Cognitive Impairment. Which are made worse also by external environment factors and cold and flu symptoms. 

5. There is still the unknown factors of what could potentially happen to a person with a chronic illness who has an underlying chronic illness with multiple ailments.

Lastly, there is still the unknown factor whether people with chronic illnesses such as Fibromyalgia will be given serious consideration in the category of, "the most vulnerable?" Or whether there continue to be a disregard of people living with this debilitating and incurable chronic illness, as "a not serious enough condition." 

There is the potential risk that this group of people could be overlooked and excluded from being given serious consideration, as one of the most vulnerable, or potentially at-risk groups. As explained above, due to historical behavior and lack of awareness of Fibromyalgia and Chronic Fatigue, as well as other similar chronic illnesses.

When the time comes, when the U.K. Government decides vulnerable groups must self-isolate, who will be our voice in government? Who will represent and speak on  our behalf in Parliament, or other Government/Media Platforms? 

Additional Lasting Thoughts: 

For the healthier people who are still wondering what the panic is all about. Our panic is us (people like me or high-risk groups) coming into close contact with you. Should you be the carrier of the virus "universal gods forbid." You are most likely to experience milder symptoms and recover after a week or two. While those of us with comprised immune symtpoms and additoanal chronic illnesses conditions are most likely to experience severe symptoms which could last for months. 

Even if the illnesses may not lead to death (we don't know yet), there is the change that most of us, could potentially become seriously debilitated and bedridden for days, weeks, months. This is the same impact, well for me, that I experience for example when infected with cold/flu like symptoms, or prolonged activity/travel. Point being, is that it doesn't take much for people living with Fibromyalgia to become more debilitated. 

To end, next time you decide to go shopping. If you intend on going overboard in medical supplies and stock piling on food (due to fear) please consider someone who might medically and urgently need those items. Thank you in advance:) 

YOUR FEEDBACK AND VIEW MATTERS!
I value your feedback, especially if you are living with a Chronic Illness and Invisible Illness like Fibromyalgia and Chronic Fatigue Syndrome with other underlying conditions. What has been your experience so far? Do you have any concerns or worries?

You can connect with me via the following Social Media Platforms: 
Living with Fibromyalgia Facebook Page 
Instagram ChikoCfM

Additional Resources:

1. FMA UK Statement on the recent BBC Panorama documentary
2. U.K. National Health Service
3. NHS
4. Healthline

Diclaimer:

I write as I think and review my writing (if needed) after publishing my blog posts. My intention is not to be grammatly or politically correct. Otherwise knowing me, I'll would end up spending ridiculous hours reviewing and re-editing my written work before pressing the publish button. Consequently, I may end up not publishing anything due to fear what other people think, or end up diluting my initial thoughts in order to please others. 

If you notice any errors, spelling mistakes or incorrect grammer, please do keep this in mind. Plus, I suffer from cognitive impairement:) I hope by reading my blog post, you undrestand the substance of what I am trying to say, that's what matters the most for me. 

Living with Fibromyalgia- The Things I don't Tell You!

The things I don’t tell you about living with a debilitating musculoskeletal widespread pain and chronic illness known as Fibromyalgia.   

First and foremost, you'll often find me looking seemingly well. It's a facade I've grown accustomed to, to the point where I've stopped outwardly explaining that I'm still not well.

There's a lot I keep to myself.

One reason is I don't want you to think, "Oh, here she goes again with her sob story," not that you would necessarily react that way, but it's a concern that crosses my mind.

Each time we meet, I choose not to disclose that I'm not well because I don't want to be the party's killjoy.

Here are some things I wish I could share:

Just because I appear well on the outside doesn't mean all is well inside. Most of the time, I'm grappling with my health. It's a constant struggle that never relents.

It requires ten times the daily effort to coax my brain into a semi-normal state. I have to push through and surpass the mental fog that clouds my thoughts before even contemplating stepping outside on most days.

Describing how it feels is a challenge in itself.

In the intricate dance of daily life, what you see is just the surface, the facade I've mastered – the art of appearing well when, in reality, my world is a constant struggle. There's so much I don't share, not because I don't trust you, but because I fear the label of the perpetual bearer of bad news.

Here are glimpses of the hidden battles:

Imagine waking up one day and realizing that some integral part of your brain's functionality is lost. The effortless activities we take for granted become monumental challenges. My new normal is a realm where even the simplest routines demand Herculean efforts.

I must will my mind to coax my body into action – waking up, walking to start the kettle, or taking a shower. Mundane tasks, once thoughtless, now require meticulous planning and strategic execution to overcome the exhaustion that accompanies them.

It's an internal struggle that defies description.

Physically, it feels like moving dead weight, especially when navigating stairs, which, to me, feels like scaling the Himalayas. My feet need time to awaken, pushing through the numbness as if I have no legs to hold me.

This is not a plea for pity but a window into the unspoken aspects of my life.

Before meeting you, my mind meticulously calculates the distance I'll have to traverse and the mental and physical toll it will exact. I'm constantly strategizing how to navigate our social interaction, contemplating its impact on my well-being, both physically and mentally.

But this is not about changing mindsets. I've become adept at self-development, honing resilience in the face of adversity. The challenge lies not in thinking about it but in the relentless, painful reminders from my body and mind that I'm unwell.

No matter how well-rested I may seem, the nights are restless, and sleep offers no sanctuary. It's a vicious cycle that can lead to isolation, an inability to fully participate in the world.

So much remains untold.

The hesitation stems not from a lack of desire but from the fear of revealing vulnerabilities that may prompt sympathy. I halt myself because, at times, my throat feels like it's on the brink of tears, and I don't want you to witness my vulnerability.

As we converse, I strive to absorb your words and mirror your enthusiasm, all while wrestling with the sense of alienation from a life I once knew. Simple words escape me, spelling becomes a challenge, and I navigate a world where the mundane is now a puzzle.

While we sit together, I'm juggling thoughts about our surroundings, anticipating the discomfort that might set in and calculating how long I can endure before succumbing to the need to move. The awkwardness of standing mid-conversation in a seated crowd becomes a concern, as I try not to draw attention to my physical struggles.

In these moments, my senses intensify, reacting acutely to noise and lighting. Sometimes, I leave earlier than anticipated, my heightened senses demanding solitude.

And then there's the joy – a different kind, accompanied by the bitter realization that every waking day begins with sickness. I've learned to slow down, sacrificing the fullness of life to find a more balanced existence. I live half a life, moderate and limited, to prevent the consequences of overexertion.

This is what I needed you to understand:

Appearances can be deceiving. While I may look the same, I'm no longer the person you used to know. There's much more to tell, and perhaps, with time, you'll come to know the intricacies of the life I now lead.