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Living with Invisible Disabilities and Chronic Pain with Sabeena Z Ahmed

Living with Invisible Disabilities and Chronic Pain with Sabeena Z Ahmed

 

Living with Invisible Disabilities and Chronic Pain

Sabeena Z Ahmed with Nurse Candy Lou, Ruptured Cyst Surgery, March 2020, Dubai, UAE

Sabeena Z Ahmed with Nurse Candy Lou, PCOS, Ruptured Cyst Surgery,

March 2020, Dubai, UAE

 

'Are you ill?

You don't look ill?

You look amazing!

 

What's wrong with you?

Well, you're not going to get any better if don't exercise.

You should exercise more.

 

You're getting fat!

You really need to lose that weight.

 

Are you in pain?

Oh! I'm sorry to hear that!

Have you ever tried acupuncture, massage, heat therapy?

 

Have you tried eating xxxx?

You should eat anti inflammatory foods?

 

Life's a test, you shouldn't say you're in pain!

Have your read this Surah (Chapter) in the Quran?

 

It's all about will power.

You need to will your pain away?

 

Stop being a pessimist!

You need to change your outlook on life.

BE POSITIVE!

 

Stop being overdramatic!

Stop being lazy!

Chin up and get on with life!'

 

These are some comments I've heard and tolerated regarding my invisible health conditions over the past 30 years.

I've been very patient and optimistic in my responses. 

 

How would you respond? 

 

My Video Response

 

Hello, Peace and Blessings!

Hello, Assalaam Alaikum peace and blessings World Pulse ladies!

My name is Sabeena, I love fair trade chocolate, travelling and writing blogs and producing films and about the fair trade producers and artisans I visit when I'm well.

I've lived with invisible disabilities for 30 years and chronic pain for last 4.

I've tried to keep the video as short as possible because my left shoulder is very painful.

It has been frustrating explaining my invisible medical issues and chronic pain to individuals who couldn't care less. 

I'd like to change the narrative!

My personal experiences are often ignored and my conversations regarding chronic pain dismissed to suit a narrative or subject that is easier for non family and friends to understand. 

In particular doctors, have ignored, laughed and shouted at me. Its been painful to experience medical professionals behaving badly and expressing no empathy,

When I meet people and I tell them I have Beta Thalassemia Minor, Asthma, PCOS and Endometriosis and Anxiety they look at me in astonishment. But, you look so well they say.

Yes! I do but I struggle with everyday chores others take for granted.

More recently I've been diagnosed with anxiety and panic attacks.  

Every day chores and actions are challenging. 

I struggle with fatigue, breathlessness, chronic pain and anaemia. 

I struggle with sleeping, the pain can be unbearable. 

I have a very high pain threshold and control my pain by diverting my attention and focusing on my love and passion for fair trade, sustainability, a fairer world, the circular economy, literacy and support for breast cancer research and self care. 

I work through my pain by multi tasking, blogging and vlogging when I'm well. I avoid taking high strength pain killers and exercise and eat well.

I'd like everyone watching to think about being more compassionate and kind. 

Please think before you speak!

It's costs nothing to be kind. 

Nothing is guaranteed in life particularly good health.

Today I'm struggling with chronic pain tomorrow it could be you.

Let's build a fairer, equitable world where those of us living with medical conditions and chronic pain aren't ignored, our opinions are respected and we  have the support to live our lives with dignity and respect.

Below are some of my tips about supporting someone with an invisible disability or chronic pain.

 

My Tips to Support Someone with Invisible Difficulties and Chronic Pain 

Action For Happiness - Quote Khalil Jibran

Credit: Action For Happiness

1. Be patient and respectful and try not to judge.

2. If you can't do anything just send that person a message or call them to let them know you are thinking of them,

Showing you care can be an invaluable moral booster.

3. If they don't respond, be patient. Sometimes responding to messages isn't a priority for those of us living with chronic pain.

4. A voice message or a positive link to a song, prayer or video could help them through their day.

5. If you live near a friend or loved one who is struggling with chronic pain or invisible difficulties, why not ask them what they need.

6, Ask them if they would like to pursue a hobby or past time, this could help their mental well being and a beneficial source of social prescribing. 

My siblings know that I love orchids, fair trade chocolate/products and travelling. 

7. If they don't drive, maybe you could offer to take them to their next appointment.

8.Take them out for afternoon tea, lunch or dinner.

9. Make them their favourite dish.

10. Use your creative skills to make them a practical gift they will use.

My sister loves baking and cooking often makes gluten free cakes and my favourite Pakistani/Indian dishes.

11. If you struggle with chronic pain like I do, learn to listen to your body.

12. Rest, relax, and learn to de stress and be kind to yourself.

I love to declutter, organise, singing and dancing.

I find listening to my favourite Islamic podcasts, artists or reading books a form or destressing and self care.

My passions will always be fairtrade, sustainability blogging and travel. I hope to do lots of travelling once we all learn to live with Covid 19.

Please remember 'Self care is not selfish' and be kind to yourself.

Wishing everyone good health and prosperity for 2022.

Thank you for reading and watching.

Sabeena

 

My Health Timeline 1975 - Present

Sabeena Z Ahmed and my PCOS surgery ruptured cyst March 2020, Dubai, UAE

For those interested I've listed my invisible disabilities and chronic pain timeline below.

 

 

Beta Thalassaemia Minor

I was born with a condition called Beta Thalassaemia Minor, this condition is often described as a genetic blood disorder.

Beta Thalassaemia Minor causes me fatigue, shortness of breath, itchy skin and low mood swings.

As an active individual who loves to multi task I have learnt to live with this condition.

Sadly, people can be judgemental and unsympathetic. Many individuals have been cruel and cold, they have shown no compassion instead laughing, raising their voice to shout over me when I say I can't commit to a project or initiative.

I can't express in words how insulting and disrespected I have felt.

I wish they'd walk a mile in my shoes.

Over the years I have learnt to listen to my body, I have learnt to sleep well, eat well and say No!

Saying No has offended family members, friends and individuals, but at the end of the day my health and well being is all that matters.

I will continue to shout,  'Self-care is not selfish!'  from the roof tops.

Are you listening?

 

Asthma

When I was 28 I was diagnosed with Asthma. I had a horrible attack and use inhalers to control those times when I feel breathless.

 

PCOS and Endometriosis

When I was 29 I was diagnosed with PCOS and Endometriosis.

Since 2004 I've had a total of 3 surgeries to remove painful polyps and cysts from my fallopian tube and ovaries.

 

 

Right Shoulder Rotator Cuff Surgery - November 2017

In 2016 I felt a sharp pain in my right shoulder and thought it was due to stress.

My siblings and I cared for my beloved mother from 2012 to 2016 before she returned to the Almighty after a 4 year struggle with metastatic breast cancer.

I thought the pain in my right shoulder was a culmination of carer fatigue and bereavement.

As the months rolled into 2017 the pain intensified and I found it difficult to move my right shoulder.

It was harder to complete household chores and participate in my passion exhibiting my fair trade product range at exhibitions and markets in Dubai and Abu Dhabi.

I went to see several orthopaedic consultants and specialists and after my first MRI scan my worst fears came true. The bones in my shoulder joint were rubbing against one another causing me agonising pain. I had to have surgery.

I had rotator cuff surgery on my right shoulder November 2017.

My right shoulder healed well and the orthopaedic surgeon was happy with my recovery and progress. I needed very few high strength pain killers and completed the exercise plan designed by the physiotherapist. I was on the road to recovery and a better me! :)

It was such a good feeling to know I was cured and that I could continue to campaign for fair trade producers. 

 

My Left Shoulder Rotator Cuff Surgery - October 2018

However, my joy was short lived.

During early 2018 I started feeling pain in my left shoulder, the pain grew to unbearable.

Yes, you guessed correctly. My left shoulder was behaving badly.

I'd just like to say that MRI scans are pretty scary machines.

The whole experience was surreal.

It felt like I was having an outer body experience.

My body was trapped in a white plastic case and the only connection with the outside world were the headphones and music.

The noise of the MRI machine as it scans your bones is deafening.

I spent 1 and half hours in the machine while the nurses took two scans, one of my left shoulder and one of my head and neck. I was exhausted and in terrible shape when I'd finished.

The MRI scan once again confirmed that I needed surgery.

Deja vu! I'd been here before.

I was was disappointed. I had worked so hard.

I was eating a healthy diet, I was exercising and moving forward in life.

At this point I just wanted to feel normal. 

Living my life in constant chronic pain was not a solution.

The left shoulder rotator cuff surgery took place October 2018.

I knew there was something wrong as soon as I awoke from the anaesthesia. 

I could feel a sharp pain in my shoulder, I'd not experienced this in my first surgery and you must believe me when I say I have a very high pain threshold.

I took all the high strength pain killers and accepted all the side affects. 

I worked very hard and tried with all my will and strength to ignore the pain. I exercised, ate a good healthy diet and enjoyed walking in the sun.

My sleep was poor, I couldn't sleep at night the pain was 

I winced when my husband touched my shoulder to add a heat patches, cream or heat therapy. I cried for most of 2019 and prayed to the Almighty to heal me.

After 6 months of pain and 10 sessions of physiotherapy I decided to see my orthopaedic surgeon again. Sadly, he was flippant, cold and unempathetic.

He shrugged his shoulders and said there was nothing he could do for me.

I left the hospital miserable and bawled all the way home.

I decided to visit my siblings in London and get a second opinion.

The orthopaedic consultant I visited told me I did not need surgery. I was devastated!

 

Living with Chronic Pain, Anxiety, Panic Attacks and Lifestyle Changes

3 years on I still struggle with chronic pain in my left shoulder, neck and shoulder. 

I have anxiety, heart palpitations and panic attacks.

I find simple tasks like carrying shopping bags, lifting boxes, cleaning, cooking and standing for long periods of time problematic.

I have learnt to live with my chronic pain and anxiety.

Yes, I have tried acupuncture, heat therapy, deep tissue massage and avoid high strength pain killers such as tramadol and co-codamol.

I have changed my diet, 90% is plant based, I reduced my red meat intake, take probiotics for my stomach lining, eat gluten free and avoid sugar. 

I don't drink tea or coffee.

I have lost a stone since September 2020 and hope to lose more in 2022.

During November 2019 I felt throbbing pains in my left ovary.

Over the months the pain increased and I was admitted to hospital March 2020 to have a large ruptured cyst removed.

This was my last surgery and I have been healing since.

Thank you for taking the time to read my blog.

I hope you will be kind to strangers and loved ones who are and maybe living with invisible disabilities and chronic pain you are unaware of.

It really doesn't cost anything to be kind.

Wishing everyone a happy and healthy 2022!

Love, Peace and blessings

Sabeena

 

Action For Happiness - December Kindness 2021

Credit Action For Happiness

December Kindness 2021

 

Further Reading and Links

Living with PCOS and Endometriosis by Sabeena Z Ahmed

 

 

 





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۲۰۲۲ ورلڈ فیئر ٹریڈ ڈے

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#CLIMATEJUSTICE AND #LETSDOITFAIR

 

اس سال ورلڈ فیئر ٹریڈ آرگنائزیشن کی مہم ہیش ٹیگ ہے،

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I enjoyed learning about get growing at home, composting and the activity slides.

Many thanks to Ahmed for creating and organising the presentation and providing refreshments.

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