Sensory Challenges and Events
Attending events with sensory issues due to a chronic illness can be overwhelming, but with the right strategies, it can become more manageable. Here are some common challenges and tips for handling them:
Common Sensory Challenges
Noise Sensitivity – Loud music, crowds, and overlapping conversations can be overstimulating.
Light Sensitivity – Bright lights, flashing lights, or screen glare may cause discomfort or migraines.
Temperature Sensitivity – Some chronic conditions make it hard to regulate body temperature.
Touch Sensitivity – Crowded spaces, tight seating, or certain fabrics can trigger discomfort.
Smell Sensitivity – Strong scents (perfumes, food, cleaning supplies) can cause nausea or headaches.
Tips for Managing Sensory Overload at Events
Plan Ahead
Choose quieter times to attend (e.g., early in the day or on weekdays).
Check if the venue has accommodations (quiet areas, seating options, sensory-friendly spaces).
Call ahead to ask about strobe lights, music levels, or fragrance-free policies.
Bring Sensory Aids
Earplugs or Noise-Canceling Headphones – Reduce overwhelming sounds.
Sunglasses or Tinted Glasses – Help with bright lighting or screen glare.
Comfortable Clothing – Soft, breathable fabrics and layers to adjust for temperature changes.
Essential Oils or Face Masks – Help block out strong odors.
Have an Exit Plan
Identify quiet spots or places to take breaks.
Park close to the entrance/exit if possible.
Go with someone who understands your needs and can help if you need to leave.
Communicate Your Needs
Let a friend, family member, or event staff know if you need accommodations.
Use a medical alert bracelet or card if necessary.
Take Care of Your Body
Stay hydrated and bring snacks if needed.
Rest before and after the event to prevent overstimulation.
Listen to your body and leave if symptoms worsen.
Why Chronic Illnesses Can Be Difficult To Recognise
Subtle and Varied Symptoms:
Chronic illnesses often have symptoms that are not immediately obvious or visible, which can lead to delays in getting a diagnosis.
Overlapping Symptoms:
Many chronic illnesses share common symptoms, making it difficult to pinpoint the underlying cause. For example, fatigue, pain, and digestive issues can be associated with various conditions.
Long Latency Periods:
The time between the onset of a chronic illness and the appearance of noticeable symptoms can be long, further complicating early detection.
Lack of Specific Tests:
Some chronic illnesses lack specific diagnostic tests, making it challenging for healthcare providers to confirm a diagnosis.
Psychological and Social Factors:
The emotional and social impact of chronic illness can also be significant, potentially leading to difficulties in recognizing and coping with the condition.
Fatigue:
Chronic illnesses can cause significant fatigue, which can be a major symptom that is often overlooked or misattributed to other causes.
Impact on Daily Life:
Chronic illnesses can disrupt daily life, leading to difficulties with work, relationships, and social activities, which can further complicate recognition and management.
Mental Health:
Chronic illness can also impact mental health, leading to anxiety, stress, and depression, which can make it harder to recognize and cope with the physical symptoms.
FND Awareness Day
It was five years ago I became bedridden with unexplained symptoms. The year before, I was travelling around the world solo, running a business and working out at the gym. I didn’t think I would get sick, people with chronic illnesses rarely do. But it was one of the worst years of my life. A sense of confusion, not belonging, bitterness towards the world and hoping for it to all go away.
I am #FNDAware
I was diagnosed with FND Functional Neurological Disorder. A neurological condition, one that is still underfunded and misunderstood. A common way of describing FND is that the brain sends the wrong signals to the nervous system. Although the government has announced investing in FND, there is still a long way to go.
Remember your feelings are valid and you are allowed to mourn. Unfortunately, there is still a lot of ableism and people who have never heard of the illness who get to decide on treatment, or lack of.
One day at a time.
Adjusting to Living with a Chronic Illness
Adjusting to life with a chronic illness is a journey—one that comes with emotional, physical, and lifestyle changes. Here are a few tips to help navigate this change in your life:
1. Acknowledge Your Feelings
It's completely normal to experience grief, frustration, anger, or sadness. Give yourself permission to feel these emotions and seek support when needed. There may be things you used to love, whether that’s hobbies or work which you can no longer carry out.
2. Educate Yourself
Understanding your condition can help you to make informed decisions about your health. Read reputable sources, join support groups, and communicate openly with your healthcare providers.
3. Prioritize Self-Care
Physical Health: Follow your treatment plan, get adequate rest, and maintain a balanced diet.
Mental Health: Practice stress management techniques such as meditation, therapy, or journaling.
Pacing Yourself: Learn to listen to your body and avoid overexertion.
4. Build a Support System
Surround yourself with supportive friends, family, and professionals who understand your journey. Online communities and local support groups can be valuable resources.
5. Adapt Your Daily Life
Make adjustments to your work, home, and social life to accommodate your needs. This may include using assistive devices, modifying your workspace, or setting realistic goals.
6. Advocate for Yourself
Don’t hesitate to communicate your needs to employers, family, and healthcare providers. Setting boundaries and speaking up about what you require can improve your quality of life.
7. Focus on What You Can Control
Rather than dwelling on limitations, find joy in the things you can do. Engaging in hobbies, creative outlets, or new activities can bring a sense of purpose.
Chronic Illnesses & Ramadan
Ramadan & Chronic Illnesses
People with chronic illnesses can find it hard to participate in religious/cultural events, but that doesn’t make them any less as a person. With Ramadan beginning it’s a reminder that you don’t need to ask anyone whether or not they are fasting.
Ramadan is the holiest month in the Islamic calendar, observed by Muslims worldwide as a time of fasting, prayer, reflection, and community. The fast is broken with a meal called Iftar, traditionally starting with dates and water, followed by a larger meal. The pre-dawn meal before fasting begins is called Suhoor.
Who is Exempt from Fasting?
Certain people are exempt from fasting, including:
Children who have not reached puberty
The elderly and those with chronic illnesses
Pregnant and nursing women (if fasting is difficult)
Travellers
Menstruating women (they make up the missed fasts later)
What you can do instead?
Give to charity
Volunteer
Increase your knowledge
We recommend speaking to your doctor and local Imam about your circumstances and ask them for advice. You also know your body best.
Ramadan Mubarak to all.
Life After Gaza: Surviving, Advocating & Moving Forward
Gaza My Home
Living in Gaza is unlike anywhere else in the world. For over three decades, it was my home—my place of work, my community, and where I built my life. The challenges were constant, from power shortages to movement restrictions, but so was the resilience. Gaza is filled with talented, ambitious people who strive to create opportunities despite the odds. Working at Gaza Sky Geeks, I saw firsthand how young people used technology and freelancing to break past physical barriers and access global markets. Yet, no matter how much we achieved, the reality of the blockade always loomed over us, reminding us that our futures were never fully in our control.
Disabilities in Gaza
During the last war, I was responsible for over 45 immediate family members, including my three children and elderly parents. My father, who is in a wheelchair, requires constant care. We were displaced multiple times across the strip, and as the sole breadwinner, I had to provide shelter, food, water, and whatever necessities I could find. We survived over seven months of everything the world witnessed online, but then I had to make the hardest decision of my life: leaving Gaza. I wasn’t able to save everyone—only 10 out of the 45 family members I was responsible for made it out. A week later, the borders were completely closed.
I am one of the fortunate ones who managed to escape, but with that comes a burden I never anticipated: survivor’s guilt. Every day, I think of my family, friends, colleagues, and loved ones still trapped in impossible conditions. The guilt manifests in unexpected ways—hesitation before sharing good news, feeling like I don’t deserve a fresh start when others are suffering, and the relentless question of whether I am doing enough to help those left behind. I face waves of deep depression, weakness, and helplessness, struggling to find meaning in this new reality.
Image Credit: Saed Habib
Advocacy & Mental Health
Since leaving, I have taken on a new role: advocate. I use my voice to bring attention to Gaza’s ongoing struggles, especially in the tech and business sectors. I push for more opportunities for Palestinians in Gaza, the West Bank, and those displaced in Egypt and beyond. This advocacy work, however, takes a toll on my mental health. Every conversation about Gaza reopens wounds that have barely started to heal. The weight of carrying the stories of those who cannot speak for themselves is heavy, and burnout is a real concern.
One of the most powerful tools in advocacy today is social media. Platforms like Facebook, X, LinkedIn, and Instagram allow us to amplify Palestinian voices and counter misinformation. But the constant exposure to distressing images and news can be overwhelming. While social media is a lifeline for spreading awareness, it is also a double-edged sword, contributing to anxiety and emotional exhaustion. Balancing advocacy with self-care is an ongoing struggle—one I am still learning to navigate.
A topic that often gets overlooked in discussions about Gaza is the experience of people with disabilities. The war has dramatically increased the number of individuals with disabilities, whether from injuries, trauma, or lack of medical care. Even before the war, Gaza was a difficult place for people with disabilities, with limited accessibility and resources. Now, with infrastructure destroyed and medical aid restricted, their struggles are even more severe. Advocacy for Gaza must include them, ensuring that any rebuilding efforts are inclusive and that they are not left behind.
As for my own mental health, it is a work in progress. The trauma of war, displacement, and the uncertainty of what comes next weigh heavily on me. Some days, I am focused and driven, determined to make an impact. On other days, the sheer magnitude of loss feels paralyzing. Therapy is not always accessible, so I rely on community support, self-reflection, and advocacy as a form of healing. But healing is not linear, and I remind myself that it is okay to take things one step at a time.
Healing
So, what’s next for me? I am exploring different paths, from remote work to potential relocation opportunities. I am committed to continuing my advocacy, helping Palestinian professionals connect with global opportunities, and ensuring that Gaza’s story is not forgotten. My goal is to find a way to balance personal healing with meaningful work—work that not only supports my family but also contributes to a better future for my people.
For anyone reading this, especially those who have supported Gaza from afar: your voice matters. Your engagement matters. Whether through social media, donations, or policy advocacy, every action counts. Gaza is more than a conflict zone—it is home to people with dreams, talents, and limitless potential. And as long as we keep telling our stories, those dreams will not be forgotten.
Written by Saed Habib
A New Year, Same Chronic Illness
Navigating your mental health while managing a chronic illness can be particularly challenging but also deeply rewarding as you discover strategies that enhance your well-being. Here are some thoughtful ways to approach it in the new year, or you can completely ignore this article, we know how it is:
1. Set Realistic Goals
Prioritize Self-Compassion: Accept that your energy levels (spoons) and abilities may vary. Set flexible goals that accept your limits.
Focus on Small Wins: Celebrate even small achievements to maintain motivation and a sense of progress.
2. Build a Support Network
Connect with Others: Join support groups, either in-person or online, for people with similar conditions. Shared experiences can reduce feelings of isolation.
Lean on Loved Ones: Communicate openly with family and friends about your needs and feelings or not. If you feel triggered by opening up to people you know you can always find people who have similar illnesses and experiences.
3. Integrate Mindfulness Practices
Mindfulness Meditation: Regular practice can help reduce anxiety, depression, and pain sensitivity.
Deep Breathing Techniques: Useful during moments of stress or when dealing with symptoms.
4. Prioritize Therapy
Seek Professional Support: Therapists, particularly those specializing in chronic illness, can offer tools to navigate emotional challenges.
5. Cultivate a Routine
Balance Activity and Rest: Develop a routine that includes time for work, self-care, and leisure without overdoing it.
Sleep Hygiene: Maintain consistent sleep patterns to improve mood and energy levels. (we know this can be tricky)
6. Practice Gratitude
Journaling: Reflect on positive moments or things you’re thankful for each day.
Shift Focus: Recognizing small joys can help counterbalance the challenges of chronic illness.
7. Engage in Creative Outlets
Express Yourself: Writing, art, or music can be therapeutic and help process emotions.
Try Something New: Explore hobbies that align with your current abilities and interests. Or research a random topic that is interesting to you.
8. Stay Physically Active Within Your Limits
Adapted Exercise: Gentle movement like yoga, tai chi, or walking can boost endorphins and reduce stress. But if it means gentle exercises then do that, it’s all about what works for your body.
Physical Therapy: If applicable, consult a professional for safe exercises tailored to your condition.
9. Educate Yourself
Understand Your Condition: Knowledge can empower you to advocate for your needs and make informed decisions.
Learn Coping Strategies: Research tools and techniques that others with similar conditions have found helpful.
10. Plan for Challenges
Create a Safety Net: Identify triggers or difficult situations and have a plan to address them (e.g., relaxation techniques or reaching out for support).
Allow Flexibility: Be gentle with yourself if plans need to change due to your health.
11. Celebrate Progress
Acknowledge Growth: Look back at how far you’ve come, even if the journey is ongoing.
Reward Yourself: Treat yourself for milestones, no matter how small.
Navigating mental health alongside a chronic illness is an ongoing process. Take it one step at a time, and remember that seeking help is a sign of strength, not weakness. Starting the new year with a focus on self-care and intentionality can set a positive tone for the months ahead.
Why are Chronic Illnesses so Difficult to Understand
Chronic illnesses are difficult to understand for several reasons, mainly due to their complexity, variability, and often invisible nature. (Views expressed are personal). Here are some key reasons:
1. Complex
Chronic illnesses often affect multiple systems in the body, not just one organ or area. Conditions like M.E., Lupus, or Multiple Sclerosis have wide-ranging effects that can involve the immune system, cardiovascular system, and nervous system, among others. This makes it hard to pin down the full scope of the illness, as symptoms can manifest in unpredictable ways across different parts of the body.
2. Invisible Symptoms
Many chronic illnesses involve symptoms that are not visible or easily measurable. Pain, fatigue, or cognitive issues (brain fog) are difficult to quantify or observe from the outside. Blood tests and MRI Scans usually appear ‘clear’ which on paper will suggest the person is ‘healthy’. This invisibility can make it harder for others to understand the severity or even the reality of what the person is going through, leading to misconceptions about the illness.
3. Unpredictability and Fluctuations
Chronic illnesses often have fluctuating symptoms. People may have "good days" where they feel fine, followed by sudden "flare-ups" where symptoms worsen unexpectedly. This inconsistency can make the illness harder to track and understand, both for the individual and healthcare providers, and may lead to the belief that the illness isn’t as serious as it really is or to quote “in your head”.
4. Multiple Causes and Triggers
The causes of chronic illnesses are often multifactorial, involving genetics, environment, lifestyle, and sometimes unexplained factors. For example, autoimmune conditions like rheumatoid arthritis or Crohn’s disease may be triggered by a combination of genetic predisposition and environmental stressors, but pinpointing the exact causes or triggers can be challenging. This complexity can lead to confusion and difficulty in finding effective treatments. Someone can go from running marathons, eating fairly healthy and exercising to becoming bedridden.
5. Individualised Experiences
Every person with a chronic illness experiences it differently. Even people diagnosed with the same condition may have very different symptoms, treatment responses, and outcomes. For example, two people with fibromyalgia might report vastly different pain levels or fatigue, making it hard to generalize or create standardized treatment plans that work for everyone.
6. Psychosocial and Emotional Impact
Chronic illnesses can affect a person’s mental and emotional health, leading to anxiety, depression, or social isolation. These psychosocial aspects often intertwine with physical symptoms, making it harder to distinguish what is causing which symptom. The mind-body connection plays a significant role, adding another layer of complexity to understanding these conditions.
7. Evolving Understanding and Research
Medical science is still evolving when it comes to many chronic conditions. Conditions like chronic fatigue syndrome (CFS), fibromyalgia, or irritable bowel syndrome (IBS) were not fully acknowledged by the medical community until relatively recently. New discoveries are still being made about the underlying mechanisms of these conditions, which means our understanding is incomplete.
8. Difficulty in Diagnosis
Many chronic illnesses are difficult to diagnose, requiring numerous tests, specialists, and sometimes even trial-and-error treatments before a diagnosis is confirmed. Some conditions, like Lyme disease or lupus, may take years to diagnose because their symptoms overlap with other illnesses or are not immediately obvious. This diagnostic uncertainty adds to the difficulty in understanding the illness.
9. Chronic Nature and Lack of Cure
Since chronic illnesses are long-term and, in many cases, have no cure, managing them becomes a lifelong challenge. The uncertainty and long-term nature of the illness can make it emotionally and physically draining, not just for patients but also for family members and caregivers. This prolonged struggle complicates the understanding and management of the disease.
10. Stigma and Misunderstanding
Some chronic illnesses, particularly those that affect mental health or cognitive function (such as chronic pain conditions or autoimmune diseases), are often stigmatized or misunderstood by society. Patients may face skepticism or lack of empathy, which further complicates the understanding of their condition, both on a personal and societal level.
In short, chronic illnesses are difficult to understand because they are highly complex, can be invisible or fluctuating, affect individuals differently, and are often accompanied by emotional, psychological, and social challenges. This makes them both medically and socially difficult to grasp fully.
Managing chronic illnesses in a different season
Managing chronic illnesses in different seasons requires adapting self-care strategies to account for weather, environmental changes, and seasonal triggers. (***Disclaimer we are not medical experts, this article is opinion based***
Here's a breakdown of how to manage common chronic conditions across different seasons:
1. Respiratory Conditions (Asthma, COPD)
Winter:
Cold weather can constrict airways and worsen symptoms.
Tip: Wear a scarf or mask over your nose and mouth when outdoors to warm the air you breathe. Avoid outdoor exercise during cold weather, and use a humidifier indoors to reduce dry air.
Spring/Summer:
Allergens such as pollen can trigger symptoms.
Tip: Stay indoors on high-pollen days, keep windows closed, and use air purifiers. Medications like antihistamines or inhalers should be readily available.
2. Cardiovascular Conditions (Hypertension, Heart Disease)
Winter:
Cold weather causes blood vessels to constrict, raising blood pressure.
Tip: Dress warmly and avoid sudden exposure to the cold. Ensure regular monitoring of blood pressure.
Summer:
Heat can cause dehydration and make the heart work harder.
Tip: Stay hydrated, avoid excessive heat, and exercise during cooler parts of the day. Be cautious with diuretics, which can increase dehydration risk.
3. Diabetes
Winter:
Physical inactivity and comfort foods can affect blood sugar levels.
Tip: Maintain a regular exercise routine indoors, monitor your blood sugar levels more frequently, and avoid sugary comfort foods.
Summer:
Dehydration can affect blood glucose control.
Tip: Drink plenty of water, avoid prolonged exposure to heat, and store insulin properly (as extreme heat can reduce its effectiveness).
4. Rheumatoid Arthritis and Joint Pain
Winter:
Cold, damp weather can worsen joint stiffness and pain.
Tip: Keep joints warm, consider hydrotherapy, and stay physically active with indoor exercises like stretching or swimming.
Summer:
Heat can reduce stiffness but also lead to fatigue.
Tip: Engage in gentle outdoor activities in the early morning or evening to avoid overheating. Stay hydrated and cool.
5. Chronic Skin Conditions (Eczema, Psoriasis)
Winter:
Dry, cold air can exacerbate skin dryness and flare-ups.
Tip: Use heavy moisturizers, avoid hot showers, and run a humidifier indoors.
Summer:
Sun exposure can improve some conditions (e.g., psoriasis) but worsen others (e.g., eczema).
Tip: Use sunscreen, limit sun exposure, and avoid harsh soaps that can irritate sensitive skin.
6. Mental Health Conditions (Depression, Anxiety)
Winter:
Seasonal Affective Disorder (SAD) and less sunlight can worsen depression.
Tip: Use light therapy, take walks during daylight, and stay socially connected.
Summer:
Heat and long days may exacerbate anxiety or sleep disturbances.
Tip: Stick to regular sleep schedules, manage stress with meditation or breathing exercises, and avoid overstimulation.
7. Chronic Pain (Fibromyalgia)
Winter:
Cold weather may increase muscle stiffness and pain sensitivity.
Tip: Use warm baths, heating pads, and gentle stretching to alleviate discomfort.
Summer:
Fatigue can worsen in hot weather.
Tip: Rest during the hottest parts of the day, engage in light, low-impact activities like swimming, and stay hydrated.
General Tips Across Seasons:
Maintain medication adherence: Seasons don’t change the need for regular medication. Keep them stored properly in accordance with temperature guidelines.
Stay active: Adapt exercise routines to each season (indoor workouts during winter, early morning walks in summer).
Dietary Adjustments: Tailor meals to seasonal availability of fresh produce while considering your condition (e.g., heart-healthy diets in winter to manage cholesterol).
Regular check-ups: See your healthcare provider regularly, especially during seasonal changes when symptoms might flare up.
By adjusting lifestyle habits and routines, you can effectively manage chronic conditions through the challenges posed by each season.
World Mental Health Day
World Mental Health Day
World Mental Health Day, observed on October 10th each year, is an opportunity to raise awareness, promote mental health education, and advocate for mental health support. Dealing with this day can involve several meaningful actions for yourself and your community. This year’s theme is focusing on workplaces. For those with chronic/invisible illnesses it may feel irrelevant. It can also feel overwhelming seeing a number of posts about something you may have been battling for everyday. ***Disclaimer*** This is an opinion post, we are not medical professionals.
1. Self-Care and Reflection
Assess your mental health: Take time to check in with yourself emotionally, mentally, and physically. Use mindfulness techniques, journaling, or meditation to understand how you're feeling.
Practice self-care: Engage in activities that bring you peace and joy, such as exercise, reading, or spending time in nature.
Talk to someone: If you're feeling overwhelmed, reach out to a trusted friend, family member, or a mental health professional for support.
2. Educate and Raise Awareness
Learn about mental health: Take the opportunity to educate yourself about mental health conditions, available support systems, and ways to promote mental well-being.
Share resources: Use your social media platforms to share information, helplines, or personal stories about mental health. You can post infographics, articles, or videos that highlight the importance of mental health care.
Participate in discussions: Join webinars, community events, or panels that address mental health challenges and solutions, particularly those focused on stigma reduction and access to care.
3. Support Others
Check in on loved ones: Reach out to friends, family members, or colleagues to ask how they are doing. Sometimes, just letting someone know you care can make a big difference.
Volunteer or donate: Support mental health organizations through volunteering or by making a donation. You can also help by advocating for mental health policies in your community or workplace.
4. Advocate for Change
Promote mental health at work or school: Encourage your workplace or school to provide mental health resources, host workshops, or offer mental health days.
Advocate for policy changes: Support movements that push for increased funding for mental health services, improved access to mental health care, and anti-stigma campaigns.
Engage in mental health activism: Share your story (if comfortable) to break the silence around mental health and reduce stigma in your community.
5. Participate in Events
Join World Mental Health Day campaigns: Many organizations host events like walks, talks, workshops, and fundraisers. Participate in these activities to show solidarity and support.
Wear green: Green is the color for mental health awareness. Wearing green on World Mental Health Day can be a simple way to show support.
6. Seek Professional Help If Needed
If you're struggling with your mental health, use this day as a reminder to seek professional help. Therapy, counselling, or speaking with a mental health expert can be transformative.
Ideas to Celebrate:
Organize a virtual mental health workshop.
Take part in a local charity run or walk for mental health.
Create a calming space at home for mindfulness and relaxation.
World Mental Health Day is about spreading awareness, compassion, and understanding around mental health issues.
Preparing for an MRI
How to prepare for MRI Scans
Preparing for an MRI (Magnetic Resonance Imaging) scan can help ensure a smooth and successful procedure. Here’s what you can expect and how to prepare: ***Disclaimer*** We are not medical specialists and this is opinion based.
1. Before the Scan:
Follow Pre-Scan Instructions:
Your healthcare provider will give you specific instructions based on the type of MRI. These may include fasting (if contrast dye will be used) or avoiding certain medications.
Inform Medical Staff About Medical Conditions:
Let the radiologist know if you have any metal implants (like pacemakers, joint replacements, or metal plates), as these may interfere with the scan.
Mention any allergies, especially if a contrast dye will be used.
If you’re pregnant or suspect you might be, inform your doctor.
Claustrophobia or Anxiety:
If you're claustrophobic or anxious, let the staff know beforehand. They may offer sedation or allow you to bring calming aids like music. Or give you headphones and a blindfold.
2. Clothing and Personal Items:
Wear Comfortable, Loose-Fitting Clothes:
You might be asked to change into a hospital gown depending on the scan location and facility policies.
Remove Metal Objects:
This includes jewelry, watches, hairpins, eyeglasses, hearing aids, dentures, and any clothing with zippers or metal.
No Electronics:
Leave your phone, credit cards, or any electronic devices outside the scan room as the MRI's magnetic field can damage them.
3. During the Scan:
Stay Still:
The MRI machine takes detailed images, so it’s important to remain as still as possible. Any movement can affect the quality of the images.
Noise:
MRI machines are loud (buzzing, thumping, knocking sounds). You’ll be given earplugs or headphones to reduce the noise.
Length of Scan:
The scan can take anywhere from 15 minutes to over an hour, depending on the area being examined.
Communication:
You'll be in constant communication with the technician via a microphone. You can also alert them if you need to stop.
4. After the Scan:
If Contrast Dye Was Used:
You might be asked to drink extra fluids to help flush the dye from your system.
No Downtime Needed:
For most MRI scans, you can resume normal activities right after the procedure unless you’ve been sedated.
Tips:
Arrive early to fill out paperwork and ask any last-minute questions.
Bring someone to drive you home if you’re taking a sedative.
Preparing well will help you feel more comfortable during the MRI scan, and following these guidelines ensures a smoother process. However, we understand that not everyone has the same experiences.
Pacing with a Chronic Illness
Lets talk about pacing with chronic illnesses.
Pacing with a chronic illness is a strategy for managing energy levels and balancing activity with rest to prevent flare-ups and improve quality of life. It’s especially useful for people with conditions like chronic fatigue syndrome (ME/CFS), fibromyalgia, autoimmune diseases, or long-term pain conditions. ***Disclaimer*** We are not medical specialists and this is opinion based.
Here’s a guide to help with pacing:
1. Know Your Limits
Track Your Energy Levels: Start by keeping a journal or using an app to track how you feel throughout the day. Write down activities and their effects on your energy, fatigue, and symptoms.
Identify "Push-Crash" Cycles: Avoid overexerting yourself on “good days” (the push) because this often leads to extreme fatigue or symptoms later (the crash).
Establish Baseline: Find a manageable level of activity that doesn’t lead to flare-ups. This is your baseline — the amount of activity you can sustain without worsening symptoms.
2. Break Tasks into Small Chunks
Divide and Conquer: Break larger tasks into smaller, more manageable steps. This helps reduce strain and prevents overexertion.
Rest Between Tasks: Allow regular rest periods between activities to conserve energy. For example, if you’re cleaning, do one room at a time and rest in between.
3. Prioritize Tasks
List What’s Essential: Rank your tasks based on importance. Focus on high-priority tasks when you have more energy, and let go of lower-priority activities when needed.
Delegate When Possible: Ask for help with tasks that drain too much energy, especially on tough days.
4. Use the 50% Rule
Do Less Than You Think You Can: When you feel like you have enough energy for a certain task, try to do only 50% of it. This ensures you don’t push yourself too far and helps preserve energy.
5. Pace Over Time
Manage Over Days or Weeks: Think about your energy in terms of weeks, not just days. Avoid planning high-energy activities back-to-back. Leave space for recovery between busy days.
Plan Rest Days: Build rest days into your week to fully recharge, rather than waiting until you feel completely drained.
6. Listen to Your Body
Recognize Early Signs of Fatigue: Learn to spot the first signs of fatigue or symptom flare-ups (e.g., increased pain, brain fog). Stop and rest immediately when these occur, even if it feels frustrating.
Balance Activity Types: Alternate between physical, cognitive, and emotional activities so you aren’t overloading one type of energy system.
7. Use Tools and Resources
Energy-Saving Tools: Use assistive devices like mobility aids, kitchen gadgets, or software to reduce physical strain.
Plan Ahead: Prepare meals in advance, organize your space for easier access, or schedule tasks when you know your energy levels are higher (e.g., morning vs. afternoon).
8. Practice Self-Compassion
Be Flexible: Understand that some days will be harder than others, and you may need to adjust your plans accordingly.
Don’t Blame Yourself: Chronic illnesses fluctuate, and you’re not failing if you need to rest more on some days.
By learning to pace effectively, you can better manage your symptoms, prevent flare-ups, and enhance your overall well-being while living with a chronic illness. However, we know chronic illnesses look different for everyone.
How to Prepare for a Hospital Appointment
Preparing for a hospital appointment can help ensure that your visit goes smoothly and efficiently. Here’s a step-by-step guide to help you get ready: ***Disclaimer*** We are not medical specialists and this is opinion based.
1. Confirm the Appointment Details
Date and Time: Make sure you have the correct date and time for your appointment.
Location: Confirm the location of the hospital or clinic. If it's a large hospital, find out which department or area you need to go to.
Transportation: Plan how you’ll get there. Consider parking, public transport, or a ride if necessary.
2. Know the Purpose of Your Visit
Reason for Appointment: Be clear about why you’re visiting, whether it’s a consultation, a test, or a procedure.
Questions to Ask: Prepare any questions you have about your condition, treatment, or medications.
3. Bring Important Documents
Insurance Information: Have your insurance card and any required authorization or referral forms.
ID: Bring a form of identification like a driver’s license or ID card.
Medical Records: If this is your first visit or a follow-up with a new doctor, bring any relevant medical records, test results, or referral letters.
Medication List: Prepare a list of all medications you are taking, including dosages and frequency. You can also bring the actual medications.
4. Prepare Personal and Medical History
Medical History: Be ready to discuss your medical history, including past surgeries, illnesses, allergies, and ongoing conditions.
Family History: If relevant, know key health issues in your family’s medical history (e.g., heart disease, cancer, diabetes).
5. Wear Comfortable Clothing
Clothing: Wear loose, comfortable clothing, especially if you’re undergoing a physical examination or a test. Avoid jewelly or accessories that could interfere with procedures like MRI scans.
Image: Unsplash
6. Fasting or Pre-Test Instructions
Fasting: If you’re scheduled for blood tests, imaging, or surgery, check whether you need to fast or follow other specific instructions (e.g., no food/drinks for a certain number of hours).
Medications: Ask if you should continue taking your medications before the appointment, especially if fasting or tests are involved.
7. Prepare for Wait Times
Entertainment: Bring a book, magazine, or device (with headphones) to keep yourself occupied during waiting periods.
Snacks and Water: If allowed, pack a light snack and water, especially if you may have a long wait.
8. Bring a Support Person (if needed)
Companion: If the appointment involves important decisions, procedures, or detailed information, it might help to bring a family member or friend for support or to help remember information.
Assistance Needs: If you have mobility issues or require assistance, arrange for someone to help you.
9. Prepare to Take Notes
Notebook: Bring a notebook or use your phone to jot down key information, instructions, or next steps provided by the doctor.
Recording (if allowed): You may also ask if you can record the conversation (with the doctor’s permission) for reference later.
10. Payment and Billing
Copayment: Check whether you need to pay a co-payment on the day of the appointment and bring the appropriate payment method.
Billing Information: Confirm what’s covered by insurance and what you might need to pay out-of-pocket or medication (varies based on where you live).
11. Review COVID-19 Protocols
Safety Measures: Hospitals may have protocols like wearing masks, maintaining social distancing, or specific rules for visitors. Check the hospital’s website or call ahead to understand current guidelines.
12. Relax and Stay Calm
Mental Preparation: It's normal to feel nervous before an appointment, especially if it involves tests or procedures. Try deep breathing or mindfulness exercises to help calm your nerves.
With all these steps, you’ll be well-prepared for your hospital appointment, reducing stress and making sure you get the most out of your visit.
UK Racist/Anti-Islam Riots
Before I am a business owner, chronically ill, South Asian (Pakistani), Muslim I am also a human. Even if the world doesn’t see me as one, especially the country I was born in. The world that I have been fortunate enough to travel across, I now find myself questioning where is home. To wake up to messages of acid attacks, rumours of where the extremists are gathering is something I grew up experiencing. We would seal the letter boxes just in case and try to blend in. When lets face it, during South Asian Heritage Month it couldn’t be more ironic. There are organisations who celebrate the easy stuff, but won’t have the tough conversations.
We witness time and time again ‘inclusion’ whilst the real challenge is racism. I know people walk away from these conversations, but 6 year-old Shehla remembers having the ‘P’ word used against her and spat on. So I will always feel a certain way about it. When my experiences are met with ignorance and further hate, it shows how much work there is to do.
-So check-in with your Brown and Black friends
-Speak with your employer and work adjustments
-Do not use this time to trauma dump on your POC friends
-Stay safe
-There will be some good but we have to be honest with ourselves first. It’s 2024, and I am in a lockdown due to the colour of my skin and religion.
Thinking of those who have been killed during the Anti-Racism fights including:
-Altab Ali
-Blair Peach
-Anyone who has experienced ‘P’ Bashing & attacked because of the colour of their skin.
-Shehla (tired child of immigrants)
Sudan: Filming in Harsh Conditions/Conflict
Interview with film maker Mohamed Subahi
Meet Mohamed Subahi, a filmmaker and photographer from Sudan. His work primarily focuses on capturing the essence of human experiences, particularly those shaped by major social and political events. Currently involved in several projects highlighting the lives and stories of Sudanese individuals in Egypt after the recent conflict. To film during a conflict will impact your mental health, but what does that mean? Here’s our Q&A with Mohamed Subahi.
Academic and Professional Background:
Despite graduating with a degree in Computer Science from Alahliya University in Khartoum in 2006, my passion for cinema led me to join a filmmaking workshop at the Goethe Institute in 2010. This workshop provided me with the skills and tools to embark on a career as a filmmaker, marking a pivotal moment in my journey.
In the same year, I co-founded the "Sudan Film Factory," an independent cultural and artistic platform aimed at enhancing the capabilities of young Sudanese artists and introducing cinema to Sudanese audiences. From 2010 to 2014, we worked closely with young Sudanese filmmakers to launch the first independent cinema festival in Sudan.
Film Production:
In 2013, I produced my first two films, "Nomads" and "A Bonfire Station." Since then, I have worked as a filmmaker and art director with various non-governmental organizations in Sudan, producing artistic works that creatively address social and human rights issues.
"MADANIYA" is a documentary film that reflects on the Sudanese revolution in December, directed by me. The film portrays the experiences of Sudanese youth who actively participated in the revolution, shedding light on what "MADANIYA" (civilian rule) means to them and their community.
Tell us about your documentary?
The film 'MADANIYA' is a documentary that delves deep into the Sudanese revolution that erupted in December 2018. It focuses on three Sudanese youth: Esraa, Mumin, and Django, who were pivotal figures in this protest movement that led to the overthrow of Sudan's former president, Omar al-Bashir. The film traces their personal and political journeys during the protests, shedding light on their roles and what the revolution meant to them as individuals and to Sudanese society at large.
The film presents vivid testimonies and documentary scenes that highlight the details of the protest movement and the prominent moments experienced by its participants. It also discusses the concept of 'MADANIYA', which symbolizes civilian rule and democracy, and how this concept impacts the future of Sudan and the aspirations of its youth.
Featuring advanced cinematography techniques and visual effects that enhance its message, the film becomes a poignant story reflecting significant historical moments and expressing deep human experiences in the pursuit of freedom and democracy. It covers pivotal events since the ousting of President al-Bashir and the end of his 30-year rule, marking a turning point for Sudanese society and the lives of its main characters.
Shot over a period of five years, the film narrates events as they unfold, focusing on the lives of the main characters before the coup, and how these characters face challenges with resilience, echoing the main slogan of the revolution, the call for 'MADANIYA' - civilian governance for Sudan.
How does it impact your daily life?
The revolution and the film " MADANIYA" have had a significant impact on my daily life, adding new dimensions to my understanding and interaction with the events around me. The film enhances my political and social awareness, offering a deep perspective on the historical events that have shaped Sudan in recent years. This awareness boosts my ability to comprehend the political and social challenges facing my country, keeping me informed about local and global political developments. This enables me to participate in social and political discussions with greater understanding.
The stories of the young people in " MADANIYA" inspire me and drive me to seek ways to contribute to improving my community. Seeing these determined young individuals face difficulties and demand freedom and justice makes me feel more responsible towards my community and motivates me to work hard to achieve the goals I believe in.
The film strengthens my pride in my Sudanese identity and introduces the world to Sudan's rich cultural heritage. This encourages me to preserve and promote my culture in various forums. It also pushes me to seek more Sudanese stories and films that reflect our experiences and values.
"MADANIYA" provides me with a space for deep reflection on the suffering of others and their capacity for endurance and change. This helps me understand the human dimensions of political struggles and conflicts, making me more empathetic and understanding of others' situations. It encourages me to contribute to charitable works and social initiatives.
The film can be a powerful educational tool that I use to raise awareness among friends and family about the importance of freedom and democracy. I can discuss the ideas and values expressed in the film with others, fostering mutual understanding and contributing to building a more aware and cooperative community.
The film opens new channels of communication with others who share my interests. I can join groups and discussions about the film and the revolution, expanding my network and providing new opportunities for learning and social interaction.
The film enhances my sense of pride and belonging to my country. It reminds me of the sacrifices made by the Sudanese people for freedom and justice, making me more committed to working for a better future for Sudan.
In summary, the revolution and the film " MADANIYA" are not just historical events or artistic works, but sources of inspiration, reflection, and motivation that deeply affect my daily life and how I think and interact with the world around me.
Tell us about Sudan?
Sudan, from my perspective as a film director and filmmaker, is a country with a complex and diverse history that embodies rich and varied civilizations. Sudan is characterized by a rich cultural heritage and geographic diversity, including vast deserts in the north and rivers like the Nile that extend across the country.
Sudan has witnessed significant political changes throughout its history, including revolutions and conflicts that have had a major impact on people's lives and the course of events in the country. As a filmmaker, I draw much of my inspiration and creative works from the political and social experiences in Sudan, particularly during pivotal periods like the December revolution and its aftermath.
My films and artistic works, such as the film 'Madaniya,' highlight Sudan's rich historical experiences and political transformations, using personal stories to shed light on deep human experiences and the conflicts that have shaped the paths of individuals and communities. This approach aims to highlight vital issues and document Sudan's recent history in a style that combines artistry and realism.
To me as a filmmaker, Sudan is not just a country, but a continuous source of inspiration and creative challenges, drawing from its unique beauty and the challenges it faces."
Mental health before/during/after?
Before the revolution, I felt insecure for a long period under a dictatorial military regime that never gave me a sense of security throughout my life. During the revolution, I witnessed rapid changes and was occupied with participating in demonstrations and political events, experiencing high levels of anxiety and tension due to uncertainty and sudden changes. After that, the coup came, increasing the tension and anxiety, which had a negative impact on my mental and physical health.
But what was even more challenging was the unexpected onset of war, which was a difficult and tragic period for me. Fear, anxiety, and continuous pressures greatly affected my mental and physical health, and it was always difficult to cope with the harsh conditions I was living in, especially with the ongoing war and its continuous impact on family members and friends remaining in conflict zones.
I am still slowly recovering from the psychological shock and psychological effects of the events I experienced. Psychological therapy and social support were crucial in helping me recover from that difficult period, and I still face challenges continuously.
These events left deep marks on my life, and I realized the importance of caring for my mental health and taking better care of myself for recovery and personal growth.
What do you think needs to be done to raise awareness?
This year, Sudan tops the list of countries most likely to experience a significant deterioration in humanitarian crises according to the International Rescue Committee's "Emergency Watchlist" report. The ongoing conflict between the Sudanese Armed Forces and the Rapid Support Forces, which began in April 2023, has resulted in at least 15,500 deaths, with estimates reaching up to 150,000. The humanitarian crisis in Sudan has significantly worsened, with approximately 25 million people now in need of assistance, and around 12 million people displaced within the country, representing the largest displacement crisis in the world. Humanitarian access to affected areas has become extremely challenging due to the ongoing conflict.
Organize International Campaigns to Stop the Conflict: Launch global campaigns focusing on calling for the international community to stop the conflict in Sudan through media, social media platforms, and public demonstrations.
Pressure Governments and International Organizations: Direct appeals to governments and human rights organizations to increase pressure on the warring parties to reach peace agreements. Organize meetings and seminars with decision-makers to present the situation and offer possible solutions.
Enhance Documentation and Publication: Produce documentaries, photos, and articles highlighting the suffering of the Sudanese people, and use these materials in global awareness campaigns to attract attention and stimulate international action.
Collaborate with Humanitarian Organizations: Strengthen collaboration with NGOs and governments to coordinate efforts and provide necessary aid to the affected, and work on creating relief projects and improving access to the most affected areas.
The impact of using social media?
Social media plays a crucial role in raising global awareness about the ongoing conflict and humanitarian crisis in Sudan. It brings to light the personal stories and experiences of those affected, making their suffering more visible to the world. By providing real-time updates on the conflict, social media helps in coordinating humanitarian responses and keeping the international community informed.
Additionally, social media platforms are used to advocate for action by applying pressure on governments and international organizations to address the crisis. They also facilitate fundraising efforts, enabling individuals to contribute to support initiatives for those affected by the conflict.
Furthermore, social media fosters solidarity among activists and individuals worldwide, building a network of support. It exposes issues and shortcomings in the humanitarian response, and can influence the policies of countries and international organizations regarding the situation in Sudan.
The stigma across society
Stigma has a profound effect on various aspects of society, especially in the context of humanitarian crises such as the situation in Sudan. Stigma manifests in several ways:
Negative Stereotypes of Affected Groups: Stigma often leads to the formation of negative stereotypes and misconceptions about individuals affected by crises. In Sudan, people displaced by conflict or seeking refuge may face difficulties accessing help due to social discrimination and exclusion.
Barriers to Seeking Help: Stigma related to mental health, poverty, or displacement can prevent individuals from seeking necessary support or services. This is particularly significant in conflict zones where psychological trauma is common, and stigma can hinder access to mental health care and support.
Impact on Relief Efforts: Stigma can obstruct effective humanitarian responses. When affected individuals are stigmatized, community and governmental support for relief efforts may diminish. Humanitarian organizations might struggle to reach and assist those in need due to preconceived notions and social barriers.
Community Fragmentation: Stigma can exacerbate social divisions, creating an "us versus them" mentality that deepens tensions between different groups. In Sudan, this can worsen conflicts and complicate peace and reconciliation efforts.
Addressing Stigma: Tackling stigma requires comprehensive strategies, including education to challenge and change harmful perceptions, advocacy for inclusive policies, and support systems that address the needs of marginalized individuals. By addressing stigma, communities can improve humanitarian responses and foster a more supportive and inclusive environment for everyone.
Where can people go for more resources?
The International Rescue Committee (IRC) provides comprehensive reports and updates on the humanitarian crisis in Sudan. Their Emergency Watchlist is a valuable resource for understanding the severity of the situation.
The United Nations Office for the Coordination of Humanitarian Affairs (OCHA) offers detailed reports, maps, and data on humanitarian needs and responses in Sudan, as well as coordinating international aid efforts.
Human Rights Watch (HRW) provides reports and analyses on human rights violations and the impact of the conflict in Sudan.
ReliefWeb, a service of OCHA, offers a wide range of resources including reports, updates, and news on the humanitarian situation in Sudan.
Médecins Sans Frontières (Doctors Without Borders) provides medical care in conflict zones and their reports on the healthcare crisis in Sudan are highly informative.
Amnesty International provides detailed reports on human rights violations and awareness materials related to the conflict in Sudan. The International Committee of the Red Cross (ICRC) is involved in delivering humanitarian aid in Sudan. Updates and resources about their efforts can be found on their website.
Supporting and following local Sudanese organizations can provide insights and updates from the ground. Organizations like the Sudanese Red Crescent Society play a crucial role in local relief efforts. Reliable media sources such as Al Jazeera, and Reuters offer ongoing coverage and analysis of the situation in Sudan.
Following organizations, activists, and journalists covering the situation in Sudan on social media can provide real-time updates and insights. Hashtags like #SudanCrisis and #KeepEyesOnSudan can be used to find relevant content.
These resources help individuals stay informed about the situation in Sudan, understand the complexities of the crisis, and find ways to support humanitarian relief efforts.
Where can people watch Madaniya?
Official Film Website: For detailed information on how to watch the film, visit the official website of Madaniya.
Picture credit: Mohamed Subahi
Follow:
https://www.instagram.com/mohamed_subahi/
https://www.facebook.com/mohamed.subahi.5
Dr Marmot & Health Inequalities
Dr Michael Marmot, health inequalities
We attended the Health and Inequalities talk by Dr Marmot at this year’s Festival of Debate. The talk focused on how inequality in health has and had an impact, predominantly in the last decade. Dr Marmot suggested that "There were one million excess deaths linked to deprivation between 2010 and 2020".
There are many factors to health inequalities where you grow up, the colour of your skin, geography including postcode, and your financial situation.
Although we don’t have all the solutions right now, we will continue to advocate. We won’t try to fill out the page!
Disabilities in Palestine
Gaza Sunbirds
Palestine has been facing atrocities for 76 years and have been displaced with no right of return. We have witnessed through citizenship journalism what it’s like to make do with very little. But what about those who are asked to leave but unable to, there are many Palestinians who live with disabilities. They will struggle with basic necessities.
According to Palestine Central Bureau of Statistics one fifth of persons with disabilities are children under the age of 18. We have witnessed internet cut off which means those who rely on social media like people with hearing impairments were unable to evacuate. Palestinians especially in Gaza rely on foreign aid but have been restricted for 70+ days.
Wars, conflict and genocide create more disabilities. We have witnessed through journalists like Moataz, Bisan, Wael and Hind on how hospitals have been targeted and harming people further. Those who have been told to evacuate on multiple occasions weren’t all able to due to disabilities including chronic illnesses. Muwa’imah Beach was the first beach in 2019 for people with disabilities in Gaza. From playing basketball in wheelchairs to enjoying sunsets, the Palestinians now have to constantly worry about daily bombing.
Image: Gaza Sunbirds credit Mohamed Soleimane
Gaza Sun Birds are a grassroots organization who help people in Palestine unite through sports. They are para athletes who cycle, provide nutrition and coaching for others impacted by the atrocities. Alaa al-Dali founder of Gaza Sun Birds in 2018 was a top pro-cyclist in Palestine. Whilst attending a peaceful Palestinian rally along the Gaza-Israel border - he was shot by an Israeli sniper in the leg leading to it being surgically removed and, what he calls, the amputation of his dream. The following year, he rewrote his personal goal of competing individually in overseas races into a collective project using sport to empower others after trauma.
Assembling 19 team mates who had sustained similar life-altering injuries from Israeli attacks, he launched the Gaza Sunbirds around the ambition of representing their country at the 2024 Paralympics.
“We want everybody to see us cycling on one leg and feel the power we have: we are not a burden to our society. We will make Palestine proud. We ride for freedom.” Alaa al-Dali, Gaza Sunbirds founder and captain
You can support Gaza Sun Birds here: https://bit.ly/GazaSunbirdsFundraiser
Image: GazaSunbirds - Credit Flavia Cappellini
Festival of Debate: Making Invisible Illnesses Visible
In partnership with About M.E. & Festival of Debate we kicked off a conversation.
Trigger warnings: mental health, racism, discrimination and symptoms of illnesses.
In order to help make invisible illnesses visible there needs to be conversations around why so many people are misdiagnosed, dismissed and experience gaslighting for having medically unexplained symptoms.
At this years Festival of Debate we looked at the stigma and racism within society and the medical field. Having first hand experience like many others on assuming going to A&E will give you answers to symptoms you’ve never experienced, changed my life forever. There have been issues around getting a diagnosis. There are a lot of issues in getting an appointment and once that has been obtained, a pathways for diagnosis and treatment. There have been a few documentaries and films we would like to recommend to learn more about medical neglect: Take Care of Maya & Unrest
Picture credit: Ben from Festival of Debate
Thank you to all who attended,
Shehla.
ACU Seeds
The cure for M.E. has been found, according to a Dragon’s Den episode aired:
Giselle Boxer, founder of Acu Seeds, said in her pitch that she was diagnosed with M.E. by using Acu Seeds. Her pitch ended with an impressive response and Dragon’s investing. So what’s the problem?
Well for one, there isn’t an official cure M.E. which stands for Myalgic Encephalomyelitis. Patients are often dismissed as people with psychological stress. We support the statements made by M.E. Association regarding the concerns:
“These sort of expensive commercial products and devices should not be promoted to very vulnerable sick people until they have been properly assessed for safety and efficacy in clinical trials – in exactly the same way that drug treatments are.”
We would like the media to be more responsible with their reporting and portrayal of invisible illnesses. The BBC have now added a disclaimer to the episode.
Full statement: https://meassociation.org.uk/2024/02/bbc-dragons-den-controversy-acu-seeds
The Journey of Invisible Illnesses
***Trigger Warning*** Mental Health
“Just try harder.” Harder to hide it or harder to get better? Something I would never have questioned during my personal and professional life is becoming bed-ridden. I don’t mean becoming so tired that I needed a nap, I mean not being able to move and questioning whether or not I had a future.
I had the tendency like most millennials to work non-stop and then monetize every hobby and side hustle I could think of. Add living in an immigrant household working harder than everyone else was not a question but a way of life. I had been trying to break barriers, discipline myself into a corporate career and then traveling around the world solo. I was very active and if you ever asked me what my hobbies were this is what came to mind: the gym, hiking mountains, flying drones and traveling. This was all great, I felt like I had a lot going on for me. Until one day I began blacking out and dropping on the floor. The symptoms gradually became worse and eventually taken to A&E.
As someone who was fairly healthy growing up, I assumed I would get better. I left A&E after several hours of waiting, with more questions than answers.
“Just pray more?”
“Maybe you’re being punished?”
“What did you do to yourself?”
As a person of faith I know this happened for a reason, but to have illnesses weaponized against you can be problematic, I say can be it is. After awaiting an MRI scan during the National Lockdown I was eventually diagnosed with FND (Functional Neurological Disorder). Which is often described by Neurologist Professor Jon Stone as a “software” issue of the brain, not the hardware (as in stroke or MS).” It is often medically unexplained and unfortunately due to lack of funding. I gave up, I wasn’t able to physically get up for my prayers and felt hopeless. I tried to continue to work, I could barely stand and when I walked up and down the stairs I began to drop and that was it.
Some days it would be 22 hours of me being unable to move. The days became weeks, and weeks eventually turned into months. I gave up, I couldn’t see a way out apart from one. Everyone and their TikTok medical degrees were telling me to just be happy, positive, keep pushing, drink turmeric lattes and a bit of yoga should cover it. When I tried all these things, all I did was make myself worse.
After months of dark thoughts, I got to my worst night. I didn’t want to continue what felt like an unbearable life. I took it hour by hour, and when my head hit the pillow I felt a moment of relief. Because for several hours I would not have to deal with my symptoms. My world was ending whilst everyone else was living. When I woke up during what we call a New Year, I learned the meaning of surviving. And I was doing just that, I began to look into ways of alternative living. Over the years I have had to seek medical treatment from different medical practices like somatic therapy, acupuncture, neuropsychotherapy and physio. I found talking therapy was a starting point to me accepting becoming sick. I know I know we are not meant to “talk” about personal stuff. Well it’s too late. Knowing that having a good therapist saved my life and with building coping strategies. I could continue to speak about invisible illnesses as it is now my life but I know how isolated I was and continue to be. There will be people who leave, others who don’t get it and new bonds will be formed. One thing I know is my previous business didn’t always give me joy and fulfillment. I don’t enjoy being sick, nor do I enjoy the painful symptoms. However, I have learned how to be patient (Sabr) and genuinely learn that we won’t always have the things we once but so much emphasis on. I’ll leave you with a few practical tips that may help.
Top tips:
Get a second opinion
Write to your MP
Document symptoms
Join communities/groups who can support you
Don’t be afraid to pick up the phone to Samaritans 116 123
Set boundaries