Category: Testimony

Post menopause – a stage that came too soon

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One day that started like any other I discovered that both my ovaries and hormones hit the postmenopausal stage.

You would think that you would have the time to transit, to digest it, to say your goodbyes..

You would think that your last period would be a celebration with the words “finally” shouted over and over again.

You would think that you would throw all these pads and tampons away and say “good riddance”…

Yet, this whole stage was as brisk as missing a train by a few minutes. One day you think you are young, next day you have the hormones of a an old woman.

All the stigma, the sitcoms, the jokes, the religious connotations flood my mind.

It is really the M word? Is this it ?

Will everything from now on be downhill?

First thing I blame is society followed by the internet, then biology.

This poor female body of mine, tortured by period cramps requiring painkiller shots at 4 am, these tears that wouldn’t stop for days before menstruation … The food-cravings, the stigma, the tender breasts. The pimple outbreaks and unruly hair…

Then comes sexuality and virginity, followed by another spike in hormones during pregnancy.

A body that undergoes so many changes… expanding, contracting, opening and closing, going through cesarean and vaginal birth, breastfeeding, leaking, with stretch marks, scared, and scarred …

But a woman’s body is magical. It is beautiful.

And so is her mind…

To undergo all these changes and more.. To have the capacity of producing life, and more importantly of sustaining it.

I am ok with with menopause. I think it is just about the timing.

It is too soon for women to reach it in their 40’s. We have just figured out what life means. We have just figured out how to manage a family and a career. We have just thought that everything is supposedly under control.

We had to deal with the monthly visitor for half our lives and now we have to deal with an unwavering one.

We need to come to terms with nature and change yet again. We need to prove to ourselves that it is ok, that we will survive and ultimately be fine. We need to do all this while in control, with all other duties fulfilled.

We need to do this in silence, without drama, without shedding a tear. We need to be content and grateful. We need to be happy that we have reached this stage and that we are finally not going to worry about getting pregnant.

Instead of painkillers now we will be prescribed calcium and hormones. For those of us who are fancy and can afford it, they will tell us don’t worry you can have a natural therapy instead.

I know that somewhere very near or far, a woman just like me is going through menopause. I know that you also have had or are having your doubts or feel and felt scared. I also know that there are millions of women warriors across the globe who have done all this and that and are now grounded and serene.

To all of you queens out there I salute you. I am in owe and admire what you have done and keep on doing. Do tell us that everything will be fine. Talk about the good side of change please, help us your fellow women not be trembling believing this is the end. Send us hope from the other side of this hormonal rainbow. Just please tell us everything will be alright.

To be continued

On finding meaning in your 40’s

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Like millions of women around the globe, I have been defining myself as a mother ever since I was pregnant with my beloved first child.

Being a mother is not only my job, but also my passion, my confort zone and my cherished responsibility. It is a role that I have always loved, a privilege and a blessing.

Having any other role besides it always seemed redundant an infeasible.

I always had an admiration for working mothers, and looked at them with awe; unable to comprehend how they manage to divide their attention and identity to fill more than one shoe.

Years went by and my frustration was building up. I felt that something was missing, especially as my children were becoming more and more independent.

Many unsuccessful trials filled with self-doubt and self-judgement to find a job work, led me to more frustration and shame for wanting me being anything else but a full time mother. Nothing was worth leaving my established identity for. I was convinced that I was only good at what I already knew how to do best. Why look elsewhere? Why make any change?

I was struggling to find the right moment, the right idea, the right motivation and the right remuneration to get back on the employment market. I couldn’t understand that I didn’t need an identity shift or any kind of change. All what I needed is to trust myself and allow myself to expand.

Once I let go of my fears ending with the same suffix (employability, compatibility, feasibility, proximity, etc), I switched to “ action mode”.

I stopped thinking that I my last paycheck is in fact older than my teen. I stopped thinking of all the limitations and chains I had built around myself refraining me from moving forward. I stopped blaming myself or others for my choices and from seeing my destiny limiting. I stopped thinking of how much I should make or I can make per year. I stopped thinking of who would and who wouldn’t employ me. And most importantly I stopped feeling guilty for wanting to expand.

I always tell my children to look at life as an opportunity to gather tools to put in their toolbox and use later when in need. I encourage them to search for as many as possible of these tools and build an immense box. This way, they will always know what to do wherever they are and no matter what situation arises.

Indeed, I found myself doing the same. I had forgotten about my own massive toolbox! I opened it and I was so pleasantly surprised. All these roles and tasks and chores and challenges and opportunities I went through that can’t be written in a CV were priceless when stacked together. I had tools as diverse as breastfeeding to dealing with suicide. Each and everyone of them made me who I am.

When I saw it that way, I stopped wanting to be anyone else and I thus I wasn’t incomplete. Nothing was missing, it was just how I chose to perceive my existence. I had also gotten ridden of any guilt feelings. With this solved, my confidence and creativity were recharged. Instead of jeopardizing all my attempts with ill-conceived ideas about who I should and shouldn’t be, I started doing and enjoying what I do.

One foot in front of the other, I didn’t overthink. I started cooking, packing and distributing meals in front of hospitals. The following week I repeated, and the one after and the one after. Each time I gained a little more knowledge about how to perfect the process. Then I repeated again and learned some more. Word got out and I found people wanting to help. We cooked, packed and distributed more meals, and repeated. Each one of us added a little bit more to the process.

In this repetitive cycle, I found solace. I started acting on ideas that were forming in my mind. And little by little it was more than just cooking, packing and distributing meals. It was about finding meaning. Our small group had and has one mission, making others happy.

In the process of giving to others, you give to yourself. In physical exhaustion working for a greater cause, one forgets to worry about one’s little life. The joy of giving is ecstatic. It fills you up with light and gives you energy to keep going. Nothing beats putting a smile on someone’s face.

Yes I work long shifts and have zero monetary gain. But I wouldn’t change it for anything in the world. Doing volunteer work is therapeutic to me before being of any value to others. It grounds me, gives me purpose and endless satisfaction.

I am still a mother and always will be. It is who I am- I will always want to fill this role. I have simply expanded my identity and decided to give back to my community, and in doing so my existence makes sense.

Perhaps this formula works for you, perhaps it doesn’t. Regardless.

Whatever you do if you feel like I felt for many years, don’t doubt your capacity. Look into your own toolbox and stack all the tools you have gathered along the way and start.

Do anything you enjoy and the rest will follow. Don’t overthink it. One step will lead you to the next. Just keep being in action. Perfect your own process. Ask for help, learn from others, get inspired and inspire. Listen to your heartbeat as you create something for yourself. Enjoy feeling fulfilled and make it contagious. Don’t stop, repeat, perfect, add to it and start all over. You will find solace too 🤍

On gratefulness

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Few months back I started an initiative called SANED – the closest word in English to it would be “Support”.

The idea came to me that I would like to cook meals and distribute them to those in need. I started slowly with 10 meals, then 20 then reached 60 meals per day. I was buying the goods, cooking, packing and later distributing in the streets of Cairo.

Eventually I decided to head with the hot meals to pubic hospitals and distribute the them to the families of patients stranded in the streets waiting for their beloved ones to finish a procedure.

Surprised I was that many take the streets for their home during the stay of the patient in the hospital. I found elderly, women with their toddlers and men sitting patiently in front of buildings for hours with no end. Soon I decided to focus on public hospitals and I tried going in front of a few for several weeks.

I noticed the children looking bored and hungry. I decided that the hot adult meals weren’t very suitable for them. So I made them a breakfast or snack meal instead – the same you would give your child when going to school. I asked my children to look for small toys in their rooms to include with the meals. Soon enough with the help of their friends, we had our own SANED happy meal that made hundreds of kids happy.

Eventually, my family, friends and neighbors learned about what I am doing and they wanted to help.

I decided to create SANED with a tag line that roughly translates to “so that no one sleeps hungry” and created a profile for it on social media. Soon enough I started to receive endless phone calls from then strangers who were touched by the initiative and wanted to offer a hand.

In less than a month we became 287 active volunteers who work in transparency and cooperation towards helping patients and their families in public hospitals.

Word of mouth spread fast, and I got connected to the administration of hospitals and they allowed me to distribute inside outpatient clinics. emergency rooms and day clinics equally for children and adults. I reached a public cancer hospital, and I designed a healthy meal and a snack for the patients baring in mind what they can and cannot eat. The feedback was heartwarming.

Our combined efforts in SANED allowed us to cook over 400 meals per day (we distribute once a week till now). We have served 1861 meals in the last month to sick children, cancer patients and their families. We have also managed to buy more than 500 new winter outfits for sick children and their mothers.

On a mental health perspective, I see that SANED has many benefits. For one, it offers a channel to people to think of other problems but their own. In this sense, it is therapeutic to be involved in a greater cause that only brings positive energy.

SANED presents members with a sense of fulfillment due to its altruistic mission. It gives a sense of belonging to a larger community and makes one feel valuable. The experience of getting in contact with the less privileged is very tough especially when they are children as young as 50 days and as chronically sick. Yet, the fact that we bring a smile to their faces makes it tolerable and repeatable.

I was feeling quite down right before I started SANED. I had then decided to reduce my levothyroxine dose that I take for my bipolar disorder. I was left depleted with rapid negative thoughts for 48 hours until I upped the dose again. I was very angry yet I decided to make myself aware of my size in this universe.

Once I broke the barrier, sought out the outer world and decided to see what it is like to be in pain without any means to resolve it, my own problems disappeared. I always knew that the world does not revolve around me, but seeing is believing.

It was an eye opener for me to be able to land a hand to others who are suffering. It was relieving to be able to make a small difference. It was thrilling to see someone smile when offered something with love. It was enlightening that there is always something to offer others even if it is just a smile.

All negativity transformed into finding solutions to challenges I see on weekly basis. I have no time to feel pity for myself or answer existential questions that haunt me since the beginning of dawn. I am busy being part of a larger cause, a cause dear to my heart and harmonious to my values. On a very selfish level, SANED makes me feel productive, useful, positive, connected and alive.

There is this quote that says “when one gives, two get happy “ by Amit Kalantri and he couldn’t have said it better.

I urge everyone to try and transcend this sense of self that is so focused inwards. I urge you to look outside and find others whom you can help. There is always something do no matter how small it is and it will help you reset your perspective and make you evaluate your situation more positively.

Thank you for reading. You can follow SANED on instagram through this link https://www.instagram.com/saned_initiative/

On raising children

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Being a parent is a joy. It is a also a blessing. Parenting is fun. It is mechanical, and creative. It is demanding and exhilarating.

Being a parent means you are always on the clock. There are no days off, no working hours, and definitely no job description.

Being a mom is a whole different league. It is natural to many, difficult for all. Being a mom (and sometimes being a dad too), means that you have to be omniscient: you must know it all! You are a 24 hours caregiver, a cook, a cleaner, a storyteller, a nurse, a magician, an entertainer, a teacher, a driver, a policewoman, a judge, a coach, a love blanket, a problem solver, a listener, a worrier and a warrior…

All these skills come with the job. You either have “The Instinct”, read books, or learn as you go. We will be better in some skills, and worse in others. We will prefer some skills, and loath others. We will all eventually feel our way through the years and manage to our raise children into becoming independent beings with adequate skills to survive.

Yet, parenting doesn’t end there. Think of all the previous time consuming, physically demanding, repetitive and thankless tasks as basically the fun half of your job as a mother, as a father…

Parenting beyond immediate need fulfilment

So what now? My child eats alone, bathes alone, cleans his room, and studies alone. They don’t depend on me to drive them everywhere. I don’t wrestle them to go to bed, or to comb their hair. No more purées, teething, or boogie man under the bed. No more fighting over toys or sippy cups. No more diapers or wet sheets to change in the middle of the night. No more small feet to kiss. No more sweet baby smells. No more good night kisses. What could be more needed? Why isn’t my job complete?

Yes, I had forgotten to mention that a parent perhaps needs to be a psychic too!

I used to ask myself over and over again: are my children happy? Are they fulfilled? Content? How will they be as adults? Are they resourceful? Grateful? Resilient? How much can I teach them? What shortcuts can I offer them? How can I sooth them? What can I promise them? What problems will I be able to solve for them? What can I do to make them happy? How are my actions influencing the way the think, act and dream? What mistakes should I tell them to avoid?

The second part of parenting, doesn’t demand immediate attention. It is ongoing, endless, evasive, and intentional. It is about ensuring the psychological well-being of our offspring. How much nature and how much nurture is at stake here! Is a child inherently good? Born happy? What parts am I really screwing up? Can I fix it?

You got it. There is no straight answer to any of the above.

It is quite difficult to assess whether our children are happy, traumatized, anxious or fulfilled. What behaviors they will outgrow, and what will remain as a personality trait. We can’t know their future coping mechanisms, their resilience, empathy or whether they will grow to love themselves. Dwelling on these questions alone didn’t serve me much.

Parenting and mental illness

One not so beautiful wintry day, mama fell very ill. Mama could not even do the one percent of the chores of basic parenting. No more cooked meals, drop offs, help with homework, or bath time. Mama was in bed or in the hospital – almost always crying and in her pjs.

They weren’t the best times.

Years later, and without much details, and with a lot of effort and luck I got better. So much better that I could start thinking of the effect of my mental illness on my children. For more details on this journey you can refer to previous blog posts.

I was ridden with guilt, shame and of course fear. If I was scared before my illness of how “well” I was raising our children, now you can imagine how I felt. I knew that what they saw, what they lived cannot be forgotten.

I found myself taking a whole different perspective now that the “harm” was done.

We cannot undo events. They already happened. The question is, do we let all this pain pass without learning?

I still don’t know how to answer all of the above. Yet, children might as well be better adults now that they have witnessed within their family mental illness. I have to highlight though that despite how ill I was, I tried within my capacity at the time to shield them as humanly as I could from how I was feeling. But children are very smart at detecting and feeling things even if unspoken.

Parenting and transcending challenges

We talked with my daughter (as her brother was just a toddler at the time) and explained things to her. We told her about my illness in child-friendly words. We talked about depression, anxiety, and mood swings. We talked about neurotransmitters and the side effects of the medications I was taking. We answered her questions. We listened. We tried to make it more human and less scary.

I didn’t think it was enough, or that it would be useful. Like I said, this type of growth is not linear. Yet, one day my 10 year old comes back from school telling me her friend had a panic attack and that she helped her through it.

You can imagine how I felt at the time. How can she know what a panic attack is, how can she help another 10 year old breathe! How can she handle this with such a grace and à savoir faire that doesn’t match her age?

Although this singular event does not mean much in the grand scheme of things, it helped me put things into perspective.

Kids have a level of resiliency that is far higher than what we assume. They internalize negative emotions and it will show on a whole different set of behaviors. They could have trouble at school, night terrors, or start losing stuff. It will show on them in a way or another.

The key here is not to forget why they are “acting” this way suddenly. Connect the dots and don’t feel guilty. It won’t help. Don’t scold and punish. It won’t help. Understand and explain. This is a much better approach.

Work on yourself first as you are a priority. Yes, you are the sun and moon to them, and everything in between. You won’t help them if you don’t help yourself. There are good days and bad days. Try to achieve normality and mundanity as much as you can.

Show them glimpses of what used to be before. Explain again. Tell them you love them and always will. Make their existence a reason to live for. Never forget how much you love them or how much they love you. Tell them they are not the reason you are feeling this way. Tell them you will win this fight. You will do it just for them.

Believe in the power of love. Hugs can go a long way, without much words needed. With love and care they will feel safe again. They cannot be ignored or assumed too little to understand. It is better to say the truth, even partially, than leave it to their assumptions.

Parenting without a crystal ball

So yes, we won’t know if our kids will be happy when they grow up.

But meanwhile;

  1. Know that life works in mysterious ways: what could seem like a huge ordeal now and a real impasse, is in fact a hidden real opportunity for growth.
  2. Guilt and shame will make everything worse. Don’t feel guilty, and please whatever you do make sure your kids don’t feel it either.
  3. Build empathy during your interactions with your children. You need to show understanding,
  4. Perhaps the most powerful thing I have done with my daughter is telling her that each new experience gives her a new tool in her toolbox. Whenever she faces a challenge, she has to look in this toolbox for something that will help her navigate the situation. She has really good tools now that she uses regularly.
  5. Accept that your offsprings’ mental health and happiness is also beyond your control. You can’t be “responsible” for each single aspect. You role is to help, and not to control.
  6. Let them do their own mistakes. Many things are learned by doing and not by preaching, just like falling in love.
  7. Be there for your children no matter what. Say this out loud, repeat it, and then say it again. They have to know this on an organic level. They know you will be there to pick up the pieces. We all need someone to do that sometimes.
  8. Be the first one to cheer and root for them. Tell them you are and always be their number one fan.
  9. Understand that no matter how you look alike, they are independent and different human beings. They will have their own dreams and make their own mistakes. You won’t make an apple tree an orange tree. The sooner you realize this, the sooner everyone will be happy. Listen to their dreams and dream with them.
  10. Forgive and love yourself. Work on yourself. Be the better version. Learn from your mistakes and aspire for more. This is a precious life-long action that your children will see you do. Basically, let them learn by watching.

In short, we all tiptoe through parenting. Don’t be too harsh on yourself. The world wasn’t created in one day. Take a breath and make the best out of today instead of worrying about things you cannot control. Remember that each day brings new opportunities for learning and for healing. Enjoy the process, it is actually fun.

On waiting for remission…

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Waiting sucks

Waiting sucks. Whether waiting for a bus; your turn in a public restroom; your birthday present; your dessert in a restaurant; or even waiting for yourself to finally fall sleep. Waiting sucks when you did well, when you didn’t do well, or when you didn’t do anything at all.

Waiting is seen essentially as a waste of time. It is the place between two radically different states. Waiting is ambiguous, monotone, and yet interesting,..

The interesting stuff lies between where you were before needing to wait and where you will be after waiting is over. It is like a twilight zone, where we discover things we didn’t know before…

How can waiting be active ?

If waiting were passive, life would be so dull. We wait all life long for things to happen: some of them we want and some we are very keen to avoid. We learn to wait as soon as we are born. We wait to be fed, cleaned and cuddled. We even wait to die…

Waiting changes as we grow. We discover sooner or later that our needs and wants are not instantly met by the world.

Frustration builds up as we face negative experiences where waiting was not just long, but led to an undesirable outcome. We resort to prayer, to superstition, to therapy and sometimes we end up in depression; waiting.

Waiting and expectation go hand in hand. The higher the stakes, the higher is the expectation associated with waiting. Waiting for a bus is unlike waiting for remission. The first is bound to happen (the bus will eventually come no matter how late). Yet, some other waiting is tricky. What happens when you wait for remission? For better health? For a better future? For a full life?

What to do while waiting other than waiting? What can be done before waiting to make waiting more bearable? What can be done to make waiting matter, so that it makes sense?

How can we wait for remission?

I have learned so far that waiting for remission boils down to two main factors. The first, is wanting to get better. (For the sake of simplifying things, we will assume that we actually and truly want to get better). Interestingly, the second factor is accepting not getting better.

It was so confusing to me. The more I wanted to get better, the more frustrated I became. After being frustrated waiting, I gave up hope, which definitely didn’t make waiting any easier or quicker.

Waiting is a skill that sooner or later we better learn to master, especially if we are waiting for something of such great value such as remission.

We could complain or wait in silence, while we are shattered internally with each second bringing us closer to the end of a bottomless void. We can swim in the darkness and sink deeper as the pain never lessens. This would not mean that we are accepting this reality, but rather that we give up. We give up hope, we can’t see any other possible scenario. This is it. And if this is the case, remission will never happen.

Yet, if we surrender, maybe things could change. We surrender to and accept the pain, the guilt, the remorse, the shame, the pity, the ugliness of it all. We accept the status quo while knowing that nothing stays the same forever. We need to know this in on our bones. Like seriously know that nothing ever stays the same forever. It is not over, until it is over. Repeat it, feel it, believe it, know it.

We should never give up hoping to get better. I always say, if I feel better for a minute now, next time I will feel better for two minutes, then three, then an hour and so on. Yes I will get worse, but then I will get better again. Hope cannot be taken out of a person unless they decide to give up. One single minute lived without pain, means more minutes will come. Just wait.

Bottom line

Wait actively. Listen to your soul and body. Don’t undermine your thoughts. You are still creative even if life is putting you down. You still have a mind, even if you are drugged down by the doctors. You know what it is that is really wrong with you. Better still, you surely know what is really good with you. Yes, there is plenty. You are just looking the other way.

Wait while searching. Dig deep, and take it step by step. Work on everything you know how to solve, and leave the rest to time. Work it like a puzzle. Your life is a giant Lego. Do the easy parts first. No one will fix you. You need to fix yourself. There is no perfect scenario. Life is not black or white. Accept being in the grey zone.

Make your bed, shower and eat real food. You can do that. Do your laundry and get a hair cut. Get back to this thing you used to like before. Was it writing , painting, composing, gardening? Pick up something you never had the chance to do before, but always wanted to learn or do. Make waiting count.

Don’t be the same person once waiting is over. You would have lost double the time. Either way you have nothing to lose.

The goal is to rediscover yourself beyond your illness. There is an “I” behind the illness. You are not the illness. Who is it who is waiting for remission? What will s/he do if they were not sick this very second? What would have happened if they hadn’t fallen sick? What is this bloody and agonising state trying to tell me?

Don’t wait for an answer. You already know it.

Think. Cry. Fall. Shout. Rise. Create. Pray. Write. Paint. Run. Sing. Build. Forgive. Love. HEAL

Make every second waiting count.

Forgiveness and recovery

Published on by Nour Loutfy1 Comment

The blog has shifted gears. My writings were sometimes exercises of introspection – reflecting my state of mind during my struggle with depression, anxiety, and bipolar disorder. Other times, I would write about what I thought was wrong with the medical system as it stands today; not seeing the person as a whole or just silencing and over drugging the mentally ill till they slowly lose themselves in an array of side effects and endless adjustments of dosages. I also wrote about misdiagnosis and malpractice, and how our lives could change just by being given one very wrong label or another.

In my last few posts I started sharing with you the lessons taken home. There is no pretentiousness or ‘I know better’ in my words. I try to repeat this one way or another because it is so important!

So here goes…

Today I want to talk to you about a pivotal moment in my recovery.

You know getting better is not linear. If anyone tells you so, then they either don’t know what they are talking about, or they are simply really very optimistic, or just they were super lucky and are the 0.01%.

Recovery has so many elements. Naive, I used to think about it like a finish line. It was actually more of a destination, and to get there you have to take a bumpy ride.

To recover, I of course needed be on the right medication. I was supposed to find stability. Yes little by little I didn’t have anymore mood swings. A small relapse here, a little adjustment there…

I relate to this as trivial compared to what I went through. I didn’t feel depressed or have this huge void eating me up; true. Yet, I felt surprisingly guilty. Probably not surprisingly.

I was not able to feel relief. Why aren’t you happy now? Good question! I was faced with two major problems.

One: the aftermath of what ‘I have done’ to my family witnessing all this suffering. Two: the immense fear of this ordeal happening again. Three: I know I said two but I also had memory issues, self-confidence issues, brain fog, and 20 plus kilograms to lose to fit in my old socks because of all the meds I was taking before finding the right treatment, tapper off a few others, and of course I had to reintegrate into society.

After spending time feeling stagnant in these negative thoughts, I talked to my psychiatrist who suggested that these signs are very well similar to those of Post Traumatic Stress Disorder (PTSD). In brief: the experience of illness is so intense that in itself it becomes traumatic and creates guilt, fear and flashbacks. Are you familiar?

He suggested I undergo a few sessions of EMDR – Eye Movement Desensitisation and Reprocessing therapy. It is non invasive, simple and fast method of psychotherapy. I was skeptical at first but I tried and It worked really well on my trauma. Highly recommend it if you find a qualified therapist.

Relief was not immediate. But at the time I decided that I needed to open a new chapter in my life if I am to recover. Again this does not happen over night. It is a process. You plant the seed.

How can I ask those around me to forget what happened if I am constantly thinking about it? How can I be ‘normal’ if I am living every moment waiting for another attack? How can I expect to be ‘forgiven’ if I cannot forgive myself? 

Forgiveness was the magic word. And trust me it is everything but cliché.

I had no choice. I internalized this and repeated it to myself for the millionth time. Mental illness could happen to anyone at anytime. Mental illness is not a choice. Mental illness teaches you how to be human and humane. This experience showed us all how we are connected and how we love one another and how blessed I am to have my family and loved ones. They also used to tell me the same, but you know guilt…

Before all this, I had to forgive myself for the pain I went through. I decided that I will allow myself the suffering that passed and say it is ok. I don’t judge you. You were hurting and you are fine now. Again, you water the seed.

I gave myself a pat on the back and a big hug for the long road travelled and I said it is ok. I looked at all the things I have learned. How strong I have become. How loved and cared for I was and how things could have turned much much worse.

I looked at my family hoping day in day out that what dwells inside my soul will reflect into my behavior. Little by little, things began to change, and a new normal appeared.

The seed grows into a plant.

My dear reader I decided to be kind to myself because I had suffered enough and I invite you to do the same even if you are not in recovery, or even if you are not mentally ill. We have all suffered one way or another. We deserve to live guilt-free.

Allow yourself the gains you have achieved though little they may seem; for today is a good day and we only hope we replenish the well a little more tomorrow.

The importance psychiatric empathy and engagement in patient /doctor relationship

Published on by Nour Loutfy4 Comments

Today I had a routine FaceTime appointment with my psychiatrist. I wasn’t expecting much. We were just going to discuss the usual.

Yet, the first thing he told me

was “I read your blog”.

I was taken back for so many reasons. I had no idea he would have such interest in his patients, or have the time really.

What is interesting is that I had written my last entry on how I am suffering from the side effects of the meds I am taking, especially how I have lost hope, and how I feel disabled mostly because of the antipsychotic quetiapine of which I take a significant dose. Although I had shared this with him before, reading my words seemed to have had a different impact on him I would discover.

Yes. My doctor told me something I would have never ever have imagined any medical practitioner to ever say. He told me I have failed to treat you.

I could not believe what I just heard. First of all we are far from being done. I am still being treated. And I am a thousand times better my dear doctor than the first time I saw you. I cannot even find words to describe the state I was in when I first talked to you and you said yes I will take you as my patient. I could barely speak, yet you were able to translate my pain and understood me.

Today my doctor showed me how he truly listens to his patients. I had talked to him over and over again about reducing the dose of my antipsychotic. He had refused categorically on many different occasions and told me if I did I would relapse. He told me I had to bare the side effects and be patient. He was extremely worried about me.

Today however, he told me that he thought long and hard about my blog piece and decided to change the treatment plan.

He decided to change it to accommodate to my needs and because he had already increased during the past weeks my levothyroxine. [My treatment is based on three pillars: levothyroxine, quetiapine, and rTMS]. I had also a few sessions of rTMS as a back up before this new treatment plan. He also told me that if I don’t respond well to reducing the quetiapine, he would shift me to another antipsychotic. This was all I needed to hear. Hope is the most powerful medicine of all.

I am sharing this story today because it is really a breakthrough on so many levels. I rarely hear of anyone admitting or alluding that they are wrong or even questioning themselves really- especially if they have any kind of authority over you. Two, who has the time to read or listen or care about their patient outside of the 15 minute appointment slot they have? Who cares what they feel, like or dislike? I have seen my share of psychiatrists and usually when I start slightly feeling uncomfortable it means that the relationship is going south and the end is near my friend.

I have all the respect and admiration to you Dr Andy Zamar, a great man, extremely bright and sensitive.

Mind you this is just the top to the iceberg. My admiration for this great doctor has no limit.

I only hope that he has the opportunity to train other fellow psychiatrists.

Thank you for your humanity.

TBC

Bipolar, Quetiapine & side effects

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Like many days, I was thinking today long and hard about mental illness. How it infiltrates the body and gets deep into it before you even know what hits you.

You wake up one day and you don’t feel fine. You probably ignore it. How long does it take to develop a mental illness? A few months? A few years? Extenuating circumstances? What do you think?

I was obsessed, trying hard to search in my memory looking for the one moment where I became bipolar. Was it a moment to start with?

I recall anxiety, difficulty coping with everyday demands, depression, but I don’t recall mood swings. I also don’t recall a moment or an incident.

Mental illness is not a common cold. It creeped on me a little by little until I was totally submerged and couldn’t breathe. Only then did I know I was ill. I did not have the tools to detect it earlier. How about you?

This is why recovery is difficult. The longer the illness before detection and treatment (whatever the sort- especially if they screw you up) the longer the road to wellness.

Now am better. At least I know what is wrong with me. I am taking meds that work, albeit the fact that they do have side effects. There is no drug in this world that has no side effect.

My thyroid is inactive. So I take a lot and I mean A LOT of levothyroxine without much trouble. My main problem is Quetiapine of which I take 700 mg. I have gained so much weight on it and can’t lose it. It makes me lethargic, slow, drowsy, and I could sleep on it 14 hours plus naps minimum.

Yes I don’t have mood swings. Yes I am not anxious. Yes I am not depressed. Yes I am not hypomanic. But I have no initiative, my IQ is probably half what it was before, I am just plain yoghurt.

Yes I know all them drugs alienate you. But this one is so subtle. Or maybe it is the high dose that is making me unaware of how different I have become.

You know I just want to be me. I haven’t been me since 2016 when I was 36 and now am 39 and am still this other person I don’t know.

Do you feel the same? Are you on Quetiapine? Are you suffering from its side effects like me? Are you thinking of tapering off? Are you scared? Did you do it? Is the grass greener on the other side? Your experience is highly appreciated here from a fellow survivor to another

TBC

Bipolar – my disability

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My illness is flagrant. It is clear as sunshine. Bright as a star. Big as a 10 cart diamond ring. Obvious to the naked eye…

Yes it is when I have an episode.

But when I don’t…

It is dormant. Blends with the background. Goes unnoticed. Quiet common. Just like the flue. It is a John Doe..

I tend to forget, for am human. And we humans tend to do so. A lovely quality we have. Makes us able to live, to turn the page.

When my illness strikes back, am always surprised. It takes me a few days to adjust. As if it is the very first time am experiencing the symptoms. All fresh.

The pain is new, yet the depth of the scar is familiar. I remember the fear of falling into the abyss of mental illness with all what it means – more meds, more symptoms, more side effects, hospitalization, days in bed, fear of losing my mind, fear of losing control, fear of finally giving in to suicide…

Yet I know I can’t. Something tells me this cannot be the end. I recall the conversations I had, the notes I wrote, specifically for these moments to remind myself not to give in.

I try to summon my strength, the strength I have and the one I don’t, and pretend to stand up. I rise in my dream above myself, above my tears, above my hospital bed and tell my doctors to let me live some more.

But if you are ill like me, you will soon learn that living isn’t the point really. So what is the point of having a life with such an illness that makes hell a walk in the park? On average I get two good weeks a month and if am lucky we can stretch them to three.

I am heavily medicated, but at least the meds I take do work.

I got PTSD. I am being treated for it, but I feel mostly guilty all the time for how my illness affects my loved ones.

That’s where am at now with my bipolar. I cannot always embrace it. I don’t rise above it. I wish I could say it differently, bipolar is my disability…

The New Business Model in Psychiatry

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I checked myself yet again at the hospital. It became my full time job really.

Shame on me, I ain’t strong enough to survive outside more than a few weeks. But is it really my fault?

Not more than 24 hours later, yes you know it, I checked myself out. I wasn’t scared of the environment this time. I liked the room. I even met a couple of people with whom I could have a decent conversation – shout out to K, L, N and N!

My problem was the medical body. My sessions with them were more of open ended questions like in qualitative research. I felt time had no essence to them. Like progress cannot be measured daily.

When I went to London, and I am not being payed to say this – if you only knew how expensive it actually is to get treated there out of pocket – every single word I said was taken seriously. Every little side effect was looked at. I was seen as a person; a real person and not a spoiled brat complaining for no reason.

Secondly, the doctors would not dwell endlessly on what to do. They took calculated risks. Because if they agreed to the status quo then nothing would happen.

I was always reassured and never ever did anyone tell me this drug or this method works for 20% of the patients. I was given hope – in abundance and also had the opportunity to chat with other patients who are now truly healed.

While I was completely fitting the box of patients in the clinic, my individual voice and needs were immediately heard.

That is why I felt I was wasting time at the hospital and that is why I left 24 hours later instead of staying for a whole 10 days.

My business teachers at university always said a good product or service starts by answering a customer pain.

Very well, mental illness is filled with customer pain; be it the patient herself or her family members.

I have been treated and admitted to hospitals both in Paris and Cairo. Although the settings could be strikingly different; there are major similarities.

Patients have little control over the course of their treatment; unless they happen to well read – and still that could be interpreted as a personality disorder.

Here, business people, here is a business model for you to follow. Instead of keeping the one patient coming back for 10 years, you can have thousands of them and most likely very happy ones too. Am no mathematician but get your excel sheets out and do the works. It doesn’t need a genius to tell you where the money is; and coincidentally health too…

TBC

Capitalism and bipolar disorder

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My illness relates to many many factors. It is my upbringing and my biology. It is society, it might even be fate.

My illness maybe relates the most to a lifestyle, no; to a mode of being that I am not the only one to have created but surely had to abide to. My illness is so common you would be surprised. My illness is “in” these days. My illness is a mutation, a mistake if you would like. My illness is a blessing as much as it is a curse.

I get to the downs of the deep blue and sometimes I stay afloat. Sometimes I even catch a boat, a sailboat- nothing too fast. I wonder and I ponder about my existence and yours. I shed a few tears and even pop a few pills.

I always end up where I started with mixed feelings about everything. Nothing is my favorite as how should I know? My illness changes my mind as I grow.

Something is constant amidst this storm. I know there is a malfunction, that much is true. Why does it relate to inequality go ahead and ask me. All is a competition, life has become a race. We run around all day seeking a bigger dream. I don’t get there and you don’t either, but why does she? Born in here, studied in there, oh that is her family? Where is my choice in all of this? Where is this leading me? Achieve and fail and fail to achieve. I ask myself why I stopped dreaming. Those images were not mine but yours, so why keep them in the first place? Illusion, delusion, materialistic being. This is not whom I should be. Why wake up and swirl like a mouse? That’s when I decided not to leave the house. I felt immense fear from life; how on earth can I win this race? Exclusion, demotion, gender roles or nationality?

TBC

When the dream catcher fails to catch all your dreams

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So I went all the way to London. I am from Egypt you see, I had to pay good money for a visa, and lots more for accommodation and living expenses. One hefty sterling pound costs 23 Egyptian pounds. You get the picture.

Any-who. We travelled, out of pocket. We did everything by the book. We stayed in the nicer areas. By we I mean my husband and I, and later my sweet father. We ate out, he took me shopping. He transferred money to me weekly even though he was already paying for most of the stuff.

He isn’t a millionaire. He isn’t a business man. He is just a loving father.

Twenty five days we stayed in London. Day in day out. My husband visited every single second he had. He took me out even to the west end.

I cried in their arms and laughed some more.

I was not prepared however for what the doctor told me one fine morning.

He told me Nour you have to go home. I didn’t comprehend. What home? Like the place we are renting out here in London? No? Home as in Cairo? As in the Middle East, pyramids and all? Why!! I am following your words by the book. Doctor Zamar your words are my command like literally.

Why summon me and tell me this?

It figures the bloody Prozac is giving me horrible withdrawal symptoms. He can’t treat me with them taking place. It is nothing personal he said but rTMS won’t be efficient. Nothing would work.

His plan was to fly me home and give me back Prozac and instead of weaning me off cold turkey; to tapper it off gradually.

Trivia: do you know that they don’t sell Prozac in smaller doses than 20 mg in many countries?

Guys, people of the pharmaceutical world stop lobbying against recreational drugs and kindly start putting your **it together with psychotropics.

An Arabic word comes to mind to describe the situation “Haram”; it roughly translates to “god forbidden”.

God forbids this bullshit companies are selling to us the millions of us this shit as pain relief…

God forbids you to prescribe us shit that will literally make us want to end our lives

God forbids you from making zillions hurting us and also making us dependent on you with every cell of our body.

We don’t need strong will to quit the poison you are selling us, we need a miracle.

I was willing to undergo Electric Chock Therapy ECT- which would basically erase what is left of my poor memory- just to get rid of the effect of the antidepressant in my body. That my friend is like asking me to deep fry my hand to get rid of a mole. It is that illogical. But I was willing to; cross my heart. Doctor bless him said it would be useless.

So now after quitting dear Prozac – the sweet antidepressant that is almost given over the counter – and I swear to god given to “normal” people who just want to lose weight; I am back to square one. I am taking it again. And will reduce the dose every 10 days.

I can’t give you more feedback about my new treatment as it came to a halt.

But for the love of god, for the love of Jesus, of Moses, Mohamed, and Buddha; NEVER take antidepressants if you might be suffering from a mood spectrum disorder.

TBC