It’s been a while… 

Assalamualaykum/hello readers! 
It’s high time this blog was resurrected from the murky backwaters of the Internet and given a new lease of life.. I know, I know. Many of you have asked when the next post will be up and if slacking was an Olympic sport, I would’ve achieved Gold long ago. 
If truth be told, my mental and physical health hasn’t been great. Then there were other issues to deal with which left me stressed, shattered and er.. In hospital. Despite me telling myself that I was going to be as chilled as can be and not let anything worry me! The best laid plans and all that.. 

(Btw, if you’re new to the blog, please check out About Me here 🙂 thanks) 

But moving on.. I’ve had some wonderful opportunities come my way in these few months. All will be revealed soon! 

I’d like to draw a line under the negative events of the past few months and make a new start here. So. *deep breath* 

Here are some of the things I’ve been up to:

I’ve had an article published in Al-Mumin magazine! The lovely people at Al-Mumin even published a few pertinent and important questions and answers about living with an Ostomy. This is HUGE. I’ve been trying so hard to raise more awareness in the Muslim community, trying to show that ostomies are normal and us Ostomates are pretty awesome! It’s been a slow journey and to have this published is pretty incredible as the magazine has a reach of thousands, all over the world. Feeling slightly overwhelmed here. I feel it’s gone a long way to removing the stigma associated with have an ostomy. Of course, there’s still work to do but this is an important step. 

Secondly, I was contacted by the wonderful colorectal nurses at City Hospital, Birmingham. They were arranging a Stoma Care event at West Bromwich Albion football club and wanted little old moi to do a talk. I’ll admit I was shocked (in a good way!) and VERY excited! It went really well. I was buzzing from the high it gave me. Not being able to see the audience did kind of help though 😉 

I met the lovely Helen from Convatec after the event and we had a chat.. But I’m not going to say too much about that at the moment! Suffice to say that the future is looking VERY exciting inshaAllah. 
Of course, it isn’t all sunshine and roses. I still struggle with anxiety, horrible thoughts, struggle to meet people and even text my friends but I’m aiming to work on that inshaAllah. Please remember me in your Duas. 
That’s actually one of the reasons I haven’t blogged in so long – my brain feels as though it’s been sleeping. I’m not sure if that’s a side effect of the pills I’m on. Whatever it is, the fog seems to be lifting Alhamdulillah and I feel ready to start setting some goals. Probably not resolutions as they’re hardly ever kept! 

Rosie, my beautiful ileostomy, is quite well. Trumping away merrily as usual. Changing my bag has become a bit of a struggle as my eyesight weakens further. However, it won’t beat me inshaAllah! I’m determined to do things for myself for as long as I can. 

On that note, my mobility training has been going exceptionally well Alhamdulillah! I’ve passed indoor training with flying colours (different cane techniques, going up and down the stairs, entering a room, locating door handles etc) and we’ve progressed to outdoor training. In fact, we took a trip into town a couple of days before Christmas and I was super confident! I seem to have lost some of that confidence what with being unwell and not going out recently but I’m sure I’ll be back to where I was soon inshaAlllah. Of course, it helps that I have the best mobility training officer who treated us to a lovely coffee the last time we went out. My next appointment is booked for next week and I’m really looking forward to it. It feels so good to be able to confidently navigate my way through the city alhamdulillah. 

I’ve had to resort to asking my mum to wash my hair again as the fatigue has been terrible. This time round, I’m grateful that I have such a wonderful mother and I don’t want to dwell on how useless it can make me feel. InshaAllah I can build some strength up soon. 

I haven’t written much about how I feel emotionally but that’s because the inside of my head feels like a mess. It’s very foggy in there. I’ve been listening to more Qur’an lately and that’s helped Alhamdulillah. InshaAllah the next blog will make more sense! 

Do let me know what you think in the comments below and as always, pop over to Facebook for more frequent updates! I’ve really missed interacting with you all. A huge thank you to everyone who messaged and emailed to check how I’m doing, it means a lot. ❤ 

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Witching Hour

‘What is witching hour?’ You may ask.. The answer can be found in Roald Dahl’s wonderful book, The BFG. (If you haven’t yet read it, what on earth are you waiting for?!)

Little Sophie is terrified. It’s the middle of the night. All the little children in the orphanage are sleeping. She knows there’s SOMETHING looming in the street outside.

In the words of Mr Dahl himself:

 

Witching Hour by Roald Dahl

 
I felt this description was quite apt. I know this feeling well.. I’m not sure what causes it. But I stay awake for hours at night feeling terrified. Every night. I can’t explain the fear. I cry because it’s so intense. A deep, dark, unsettling fear. I couldn’t tell you what it is exactly I’m scared of. I’m aware that this sounds silly. I’m an adult. I ought to be brave. But here I am, sitting in my room just past midnight, feeling terrified.

It wasn’t always like this. But in recent weeks, it’s been getting worse.

You’d think sleep would be a welcome respite. But the nightmares seem worse than the terror. Sometimes I’m fortunate enough to have a dreamless sleep. Other times I wake up in tears because the nightmares were so vivid, so real.. Sometimes I KNOW I’m dreaming yet I still can’t escape. It’s as strange as it sounds.

I’m told these are symptoms of PTSD (post-traumatic stress disorder) and I was shocked to discover that PTSD can affect those who’ve dealt with severe illness and/or surgeries. I suppose it makes sense in a way. The body isn’t going to be too thrilled about being cut up and having bits removed. Add the constant self-doubt, anxiety and depression (which seems part and parcel of IBD) to the mix and you’ve got yourself.. A very sorry situation.

Here’s some information about PTSD:

Post-traumatic stress disorder (PTSD) is an anxiety disorder caused by very stressful, frightening or distressing events.

Symptoms of PTSD: Avoidance and numbing

– Avoiding activities, places, thoughts, or feelings that remind you of the trauma

– Inability to remember important aspects of the trauma

– Loss of interest in activities and life in general

– Feeling detached from others and emotionally numb

– Sense of a limited future (you don’t expect to live a normal life span, get married, have a career)

Symptoms of PTSD: Increased anxiety and emotional arousal

– Difficulty falling or staying asleep

– Irritability or outbursts of anger

– Difficulty concentrating

– Hypervigilance (on constant “red alert”)

– Feeling jumpy and easily startled

Other common symptoms of post-traumatic stress disorder (PTSD)

– Guilt, shame, or self-blame

– Substance abuse

– Feelings of mistrust and betrayal

– Depression and hopelessness

– Suicidal thoughts and feelings

– Physical aches and pains

(Info taken from the NHS website and mind.org)

Doesn’t feel like a bunch of fun.

I’ve finally made an appointment with my doctor to see what’s happening about seeing the psych team.. I’m not sure I’m coping too well overall. I’m getting better at accepting everything but there’s still a long way to go. It’s going to be a long journey and I don’t even know if I’ll be able to handle it but I’m willing to try. That’s a huge step up from a few months ago when I couldn’t find any hope and the darkness was even more crushing. This time, I’m hopeful that I might one day feel better. InshaAllah (God-willing)…
Moving on..
I was quite adventurous a couple of days ago.. I decided to go for a sleepover at my cousin’s house. I think it went relatively well, all things considered!
There was the panic attack which came so unexpectedly as I was chatting to my cousins and we were laughing.. Suddenly I couldn’t breathe, felt dizzy and started crying. It was an awful thing for my nine year old cousin to witness and I wish I could have prevented her seeing it 😦 But it was meant to be. 

Later on, we had a very informative and interesting chat about the digestive system and she was simply AMAZED to discover that I no longer have a large intestine, rectum and anus! I explained how it works and she found it pretty cool. I love kids! She wants to decorate more of my bags so I’m guessing she isn’t freaked out lol – kids are MUCH better than adults.

I’m currently suffering from a book hangover. Booknerds will recognise this feeling. It is a feeling of desolation upon finishing a brilliant book, the confusion of flitting between two very different worlds – literary and reality. There’s only one cure – more reading. I recently invested in a Kindle and it’s supposed to be a lot easier on the eyes than reading on a tablet. I’m not sure how true that is for me as I hold my book/tablet around an inch away from my left eye. It’s impossible to see clearly with the right one no matter how close the book is. I’m scared the left one will go the same way but for now it’s serving its purpose! Such are the perils of being legally blind but I have much to be grateful for.. I may not be able to see further than a few inches and can’t recognise faces but I’m still able to do what I want without difficulty. Alhamdulillah (thank the Almighty).

I taught a class this week and I’m feeling so very thankful. I did have my face glued to the iPad most of the time however I explained everything clearly and that’s the important thing.
Rosie, my wonderful Stoma (the bit of my small intestine that’s sticking out of my tummy so I can poop!) is making some rather impatient noises so I think that means I’ve written enough.

I’ve delayed the posting of this entry by a couple of days as I was due to see someone at the GP’s surgery to ask about being referred again..
The appointment was quite nerve-wracking. Going through the usual questions of how I feel most days, whether I’m still interested in the things I used to enjoy, whether I have thoughts of harming myself, whether I feel like a burden on anyone. The nurse was understanding but they’re not all easy questions to answer.

The upshot of it is that I’ve been referred to the psych team again. And this time I’ll make sure I note down the CORRECT date. I’ve been given some happy pills to help me along and will come back in two weeks for a review.

How do I feel? I’m not sure. On the one hand, I’m glad I’ve plucked up the courage to make an appointment and get the ball rolling. But it’s taking all of my strength to keep fighting and I don’t know if things will get better. I have to believe that they will. I never thought this would be me.. Relying on pills to get me through each day, struggling to cope without them. I’m trying not to listen to the voice in my head which tells me it’s nothing and I’m just making a fuss. It can’t be nothing, right? I’d be able to make it go away if it was. Then again, I had a warped sense of looking at IBD. There’d be blood in the toilet, severe cramps if I even drank water and I couldn’t leave the house in case I had an accident but I was convinced it was nothing really and I wasn’t seriously ill. Of course, the people who claimed I was faking didn’t help at all. It started the self-doubt and it’s never really gone.

I’ve welcomed the moments when I feel numb, like now. I don’t feel happy or sad. Just empty. It’s a welcome break from the sadness. I’m present but then I’m not. A feeling of detachment.
I’ve had a couple of calls from people who need help but I’m not the best person to help them. How can I explain this? Some understand and give me the space I need. And some don’t. To them, I’m the teacher, the helper, the one who’s always there for others. They can’t understand that it’s changed and it takes all of my energy to get through each day. I’m taking a break from all that because I’m worried I’ll give the wrong advice, say the wrong thing and make things worse. My mind isn’t functioning normally so how can I possibly help others? I feel like a hypocrite.

Dua (prayer) has kept me going. Talking to the Almighty. Knowing that He is listening and we’re never tested more than we can bear. That there is a reason for this. After all.. If Allah has decided something, how can it be anything but good for me? He is my Creator and He never forsakes the ones who call unto Him.

 `Ubadah bin As-Samit (May Allah be pleased with him) said: The Messenger of Allah (PBUH) said, “Whenever a Muslim supplicates Allah, He accepts his supplication or averts any similar kind of trouble from him until he prays for something sinful or something that may break the ties of kinship.” Upon this someone of the Companions said: “Then we shall supplicate plenty.” The Messenger of Allah (PBUH) said, “Allah is more plentiful (in responding).”

[At-Tirmidhi]

Thank you to each and every one of you for reading, commenting, emailing and above all, praying for me.. It means a lot and your support has kept me going. Thank you for being on this journey with me.
I was nominated for Muslimah Bloggers ‘Most Inspirational Blogger Award’ and if you think I fit the bill, kindly click here to vote! There are a couple of days left. It’ll take a couple of seconds. I’d greatly appreciate it 🙂

If you want to stay updated, please subscribe to the blog using the ‘follow blog via email’ box on the right. 

Stay blessed!

Rosie’s Second Stomaversary!

Woohooo it’s my second Stomaversary today! I love celebrating this day, it’s such a happy time. It reminds me of how strong I am and what I’ve been through… But before I go on, let me explain a bit:

This time two years ago, my surgeon was getting a good look at my insides.. He then removed over 6 feet of bowel in a 6-hour operation. He created my beautiful stoma, Rosie. She’s a bit shy so I won’t put any pics here 😉
Regrets? None. Except maybe the mashed potato I had a few days after surgery and my remaining bowel went into spasm, refusing to take in anything else for the next few days!

Alhamdulillah I went in smiling for surgery.. I knew this was my destiny and that I wouldn’t be let down. Whatever happens is with the will of Allah.
And.. The past two years have shown me the people who truly care, and those who pretend to. It’s taught me that for every one person who tries to make things difficult, Allah has placed 5 into my life more who do care. May Allah reward you all and keep you on the Straight Path. I pray that we all meet in Jannah. Ameen. ❤️
We are survivors, not quitters. Life may knock us about, but ultimately what matters is that we pick ourselves up and try again. If not today, then tomorrow. Above all remembering that NOTHING can happen unless Allah wills it to.

It’s been a roller coaster of a ride but I’m thankful for it every day. I’ve been reflecting on the past two years and realising the lessons I’ve learned, sacrifices I’ve made, friendships I’ve been blessed with and tests I’ve had to endure.

Before I go into all that, I’d like to say that not for one moment do I regret my decision to have the surgery. Yes I’m not back to the good health I was in before I was diagnosed with IBD but even if I could go back and change everything, I wouldn’t. I’ve learnt so many things, I am now appreciating every single day more than I ever did before, because I know that good times can be fleeting. I’m not waiting until a certain point in life so that I may be happier at that moment, I’m aiming to be happy now. Who knows if that far-away moment so many spend entire lifetimes searching for will ever come?

We plan, and we plan, and we plan but ultimately our lives are in the power of Allah. The sooner we start to realise that, the easier things become. The difficult tests we’re going through become easier to bear because we know that Allah does not burden a soul more than it can bear. These tests are sent to purify us, to cleanse us of our sins and to elevate our rank, just as gold ore is heated so the scum can be removed and the shining gold we know and recognise is then revealed.

Reflecting back over the past two years, it’s sometimes overwhelming. At the outset, it seems that these 24 months have been chock a block with hospital appointments, being poked and prodded with needles and tubes, my veins giving up on me and being poked and prodded again, painful blood transfusions and iron infusions, being pumped full of mouse juice, going under the surgeons knife to have my entire large intestine removed, trialling weird and wonderful drugs which caused awful side effects, not being able to look at my stoma for a whole week after surgery, coming to terms with it all, realising that I still needed another operation a year later, being in constant pain for months, having another 7 hour operation to remove more bits of me and having my bag made permanent and once I thought I was nearly better, I had huge problems with my vision as well as battling severe depression which makes it difficult to leave the house or socialise at times… I could go on. Test after test.

I suppose I could focus on all this and weep. Yes, it was difficult. It sapped my strength. I’ve been at rock bottom more than once, I’ve started having panic attacks and my body will never be the same again. It’s taken its toll on my family and friends who’ve been there for me throughout and never once complained.

But what would be the point in weeping? What’s happened has happened. It was all decided by Allah. And I know for sure that if He decides something, it’s for the best. After all, He created us.

If I give in to the negative thoughts, I’ve let IBD win. And we can’t have that! Thus, I try to focus on the positives. And there are many.

This period of patience has changed me as a person. I’m much more grateful for the blessings. I realise Allah’s mercy upon me. I’ve been given another chance to live and I intend to make the most of it. I’ve become a stronger person. I may not have been battling a physical demon but I won’t ignore all the times I was so close to giving up but I held on by a shred of hope, hope that my Lord won’t abandon me. The pain has been excruciating and at times I didn’t know how long I’d survive it but it’s all adding up and none of my tears and pain will be wasted.

I’ve let go of negative people and I don’t regret it at all. I feel I have more empathy. I’ve learnt to prioritise problems and I’m able to let go of the smaller things that really don’t matter in the grand scheme of things.

I’m so grateful for the wonderful NHS. We’ve had issues but I’m so, so glad that we have fantastic free healthcare in this country, one of the best in the world. I’m grateful to be treated at a world class hospital under the best surgeons. Alhamdulillah.

Mostly, I’m glad I’m still smiling and I haven’t let it take over. I try my best each day, I’m now back at the Masjid and I hope to start classes soon inshaAllah. I’ve seen people who have no hope, nothing to live for, no reason to smile and it makes me realise how blessed I am. I’ve been through a lot but I’m not going to let it wear me down. I’ll keep fighting.

And cake… Lots of cake. I’ve had cake whenever I was in hospital and when I came home. I baked on my good days. I’ve had so many get well soon cakes (keep them coming, lovely people, I really don’t mind 😛 ) that’s definitely a positive!

I have a lot of mixed feelings today. There’s happiness that I’ve come this far. I need to keep reminding myself that it’s no small feat. Dealing with everything the way I have is pretty freakin awesome. That much I’m starting to see!

I’m also emotional for the same reasons. I read a quote some time ago: “I never knew how strong I was until being strong was the only choice I had.” Very true. i never thought my life would take this path but I’m glad it has.

Now the only thing to do is take a deep breath, congratulate myself and wait for my Stomaversary cake which should be arriving soon!

As always, feel free to get in touch or pop over to my Facebook page and say hi!

I’m also on Instagram @gutlessninja

It’s All About The Eyes…

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This isn’t one of my usual posts in that it won’t focus on IBD or my stoma but I thought it’s time I wrote something about what I’ve been going through these past few weeks and months. I’m all about raising awareness so here goes.

I haven’t really mentioned this before but one reason why posts are usually late is because I live in a weird world, flitting between near-perfect vision and times when I can’t see a thing and would be legally classed as blind if it wasn’t for the days when I CAN see well. Confused? So are most people who can’t understand why I didn’t recognise them when I walked into the room when I could see them perfectly fine the day before!

I was diagnosed with a condition called Keratoconus around 11 years ago, at the age of 14. My vision was steadily getting worse and I was getting new glasses every few months and even then, I wouldn’t be able to see properly. Everything was just so blurry!

So what is Keratoconus?

“The name literally means “conical or cone-shaped cornea” and rarely appears until puberty or older. In keratoconus the cornea becomes stretched and thins at its centre, and the thinned part of the cornea bulges making the vision more shortsighted and irregular. As a result the vision is distorted.”
Source

In other words, my eye is rather pointy instead of being round, when looking from the side. This affects the way light enters the eye. It goes in all directions, hitting parts it has no business hitting so my eyes are extra sensitive to light. It also distorts the vision.

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There are some great pics over as well as info on this website which helps to explain everything.
Here are a few, my eyes were probably at this stage a few years ago. It’s a lot worse now.

 

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IMG_0003

I attended boarding school at a time when I wasn’t at a great stage with my eyes. Glasses didn’t work for me (because of the shape of my cornea) and it took a while to be set up with new doctors and be referred to the hospital. Then it took a while to be referred to a contact lens specialist.
So there I was at school, unable to go out on my own at night, treading everywhere carefully in case I fell flat on my face and generally getting by. I’d be lying if I said it didn’t bother me. One memory sticks out.. Cleaning the dining room one day, I picked up a dustpan and went to empty it into what I thought was a black bin bag. Imagine my surprise when the ‘bin bag’ moved away just as I was about to tip the rubbish out! Seems I was about to tip it onto someone’s head – she was wearing all black and I really couldn’t tell the difference! It took a while for three of us to explain that it wasn’t a practical joke and I hadn’t intended to cover her with dust! Not all moments were humorous – I was abroad one year and didn’t see a small step, so I tripped and fell. I was in a lot of pain, couldn’t walk for a while and had to rest. Turns out I’d dislocated a couple of joints in each foot. Oops.

One day, sitting in class, I came across this Hadith and it touched me somewhere deep inside, the very words I needed to hear when things were so difficult. It still gives me comfort.

Narrated Anas bin Malik (RA): I heard Allah’s Messenger (PBUH) saying, “Allah said, ‘If I deprive my slave of his two beloved things (i.e. his eyes) and he remains patient, I will let him enter Paradise in compensation for them.

(Sahih Bukhari)

It had gotten to the point where I couldn’t see the writing in my books and it was impossible to write in a straight line or even see what was written so I was excused from reading/writing. I must say that the teachers were understanding but it did feel really odd sitting in class and not being able to do anything. Surprisingly, my memory became stronger and I did really well in my exams. Alhamdulillah 🙂

Finally, my appointment came through and I saw the lens specialist. He showed me the different types of lenses they do and said that RGP (rigid gas permeable) lenses would be my best bet. They’re small, hard lenses. We tried a few different ones to get the best fit. Once they were in, I could actually see the letters in front of me! My measurements were sent off to the lab so my custom lenses could be made.

Two weeks later, I was back in the opticians chair trying on my new lenses. It took some time and LOTS of practice and I was blinking VERY carefully but.. I could see! I could actually see. I was allowed to take them with me so back to school I went. And oh my goodness… I cannot describe the feelings of euphoria, excitement and happiness which rushed through my mind at that time! I could see every blade of grass. The leaves on the trees. Every brick making up the buildings! Birds in the skies! And I could actually read without holding the book about three inches away from my face! It was incredible. Absolutely incredible. A whole new world had opened up. I ran around, drunk with this new vision. Never mind that I was 17, not 7 lol. I received a few odd looks but most students and teachers knew my plight and were happy for me.
Soon I was wearing them every day until my condition started worsening gradually and I would have the fit altered every few months.
Waking up in a blurry, shadowy world and progressing to crisp, clear vision is a blessing I can never be grateful enough for. I am thankful every day for medical and scientific marvels like these.

I did used to think that Keratoconus was a big issue.. But then IBD came along and I pushed it to the back of my mind, it wasn’t a priority when I was exhausted beyond belief, dashing to the loo 20 times a day, passing blood, countless hospital visits, being poked and prodded with needles and eventually having my colon removed.

To add to the whole issue, ulcerative colitis also had an effect on my eyes.. They were usually sore, dry and sensitive and I was left unable to put my lenses in. More than once, I ended up at Eye A&E with yet another scratch on the surface of my cornea. The pain was excruciating! I’d spend the next few days lying down and keeping my eyes closed because blinking was just too painful. It felt like someone was scraping a white-hot needle across my eye every time I tried.

But now that it’s gotten a lot worse, it’s affecting me quite badly and all those old feelings of confusion, bewilderment, anxiety and frustration have surfaced. It’s amazing how I’d forgotten all that.

Last year, I wasn’t tolerating the hard lens anymore and they were making my eyes very sore. I could feel them scraping against my eye when I blinked. We decided to try something different, piggyback lenses. I started wearing a clear soft lens first to try and cushion my eye and then I’d wear the RGPs. It worked really well for months, I was getting the excellent vision of RGPs and the comfort of soft lenses. They’ve been fantastic, up until they weren’t much use anymore.
My eyes have been troubling me again for a few months now. I’m only able to put my lenses in once a week at most – and sometimes it’s only once a fortnight. I’ve been given some gadgets to help me cope and I’ve been told that there are courses for people who are partially sighted but I’m not really eligible as I’m not registered (as blind or partial sighted). And I’m not able to be registered – even though I can’t see a thing most of the time – because I CAN see sometimes. Never mind that I now spend most of my time at home because I’m too anxious to go out. Honestly, it’s like taking a wheelchair away from a mobility-impaired person and telling them they’re ok, at least they can see the wheelchair!

I’ve also been given a white guide cane which I still haven’t used – just agreeing to it was difficult enough. It felt like a huge step. I was finally admitting that my vision was so bad I needed a blind cane. I can’t really explain it. At any rate, the cane is rather useful for whacking unruly and annoying siblings about the shins while pretending they got in the way. Mwahahaha! (I should point out that my siblings are adults, there’s no child abuse here!)

There is another option which has been mentioned a few times. A corneal transplant. This is an operation to remove the damaged cornea (thin film at the front of the eye) and replace it with a healthy cornea from a donor. I’ve been thinking about it a lot and I’m just not ready for it yet. I’ve had two major surgeries in 18 months and my body still hasn’t recovered fully. I don’t think I’ll be able to take on another operation yet! There’s also the fact that it’s freaking me out. Strangely, the thought of eye surgery scares me more than the other surgeries I’ve had. Open me up and remove half my guts, no problem. Attempt to talk to me about eye surgery and I start to feel squeamish!

It’s been getting me down so I’ve been avoiding company. I’ve been told off a few times for not answering the phone and not replying to text messages. Well, I’m hibernating and I don’t want to talk to anyone, thank you.
I do try.. But it’s hard. I pick up my phone to text someone but it requires so much effort. Sigh. I just want to be. Is that too selfish?
I hope I can get past this stage inshaAllah. Everything seems to be weighing me down and I feel the way I did a few days after my op when I was heading towards a breakdown. Maybe it would be best to let things take their course and see what happens. I don’t know.

Once I hit rock bottom, the only way is up.