Living with a hidden (not so hidden) illness…Part 5

So it has been a couple years since my last blog post and I wish I could say that I was done with this story…Unfortunately that is not the case.

Rewind to late 2020 and I started noticing that it was becoming uncomfortable to lie on my stomach and that something didn’t feel right. After some badgering by my other half, I begrudgingly called the doctor to make an appointment. Fast forward to the start of 2021 and Covid is still in full swing meaning that doctors appointments are just phone consultations at first. It didn’t take long for the doctor to realise that I need to go back for another ultrasound.

After my surgery they had given me around 5 years before the fibroids reappeared but here I was…2 1/2 years after my operation and knowing something was wrong. It took a little time for my ultrasound to happen and the nerves were definitely high. At this point my womb had started growing again and the familiar signs were back, however I tried to stay positive and had thought that maybe it was just adhesions after the operation. However, no matter how much you try to stay positive…sometimes your gut feeling is just too strong.

Summer of 2021 and it was time for my ultrasound…with Covid still being around, no one could go in with me, so I had to stay strong. It was apparent very quickly though that it was worst case scenario…the fibroids were back and there were already 2 large fibroids. The lady doing the ultrasound was super sweet and reassuring because as you can imagine…I didn’t take the news well…I was fighting tears and feeling numb at the same time. Not only were the fibroids back and large…but they also told me that I probably had about a year or 2 to have a baby in with minimal risk. Those that know me, know that I would love to become a mum one day and have dreamt about it for a long time.

It has been several months now since the scan and in all honesty, I am still numb…I am still coming to terms with the news. What made it harder for me was that I had just started my relationship with my other half a couple weeks before the first lockdown in the UK and just over a year later we get the news of the fibroids. I had gotten myself so worked up on the drive over to him and was so scared that that was going to be it for us. But luckily he took it as well as could be expected.

Now here we are, at the end of 2021…I have just had an MRI a couple days ago and we are staying positive for the year 2022 that we’ll be able to either have a baby safely or have some form of treatment that gives us some extra time. I am still numb and still beat myself up occasionally but there are more positive thoughts and hope for the future.

So yes, my fibroids are back and that sucks, but there is hope…and that’s what we are holding on to. Here’s to a great 2022!

Living with a hidden (not so hidden) illness…Part 4

   So here I am…3 months after my surgery. I wish I could say that it was all plain sailing and that I’m doing great. Unfortunately, that hasn’t been the reality at all.

Recovery at Home:

   After I got home, I genuinely thought that recovery would be a whole lot faster. And it did…to an extent…I no longer heard women vomiting at all hours of the day…I was no longer sleeping on a plastic bed…I had my own bathroom again.

   But you know what? Getting on and off the sofa is really hard if you don’t have someone to help you! Using the stairs was an absolute pain and climbing in and out of the shower (we have a shower head over a bath tub…) was again, only possible if I had some help. I was literally living the invalid life. I couldn’t do anything without help.

   My poor parents gave up their bed for me as I couldn’t climb into mine (I have a mid-sleeper (similar to this…https://amzn.to/2Hagjco). So whilst I couldn’t use my stomach muscles…that bed was impossible to get in to! But it was a goal I could set myself…I gave myself two weeks, optimistic I know…but I managed it!

Stitches:

   The part that I dreaded the most was getting my stitches removed. Well, stitch. I had one running stitch with a bead on either end. I had had multiple nightmares about waking up and having pulled my stitch out in my sleep…but luckily that never happened. Instead, 10 days later I found myself at the hospital (unfortunately not the one where I had had my surgery and appointments) waiting for my name to be called.

   My doctors surgery was extremely busy, so the options I had was to wait a further 3 days and have them removed at my doctors, or go to the local walk in centre and have them removed there. So off dad and I went to the local hospital. My nerves were all over the place…Was it going to hurt? Was the entire wound going to open again? Would it be infected?

   After an almost 2 hour wait, my name was finally called. To say that the nurse was confident…that would be really pushing it! She looked so intimidated, which as someone with anxiety…it really didn’t help! Luckily the actual removal of the stitch and beads, I didn’t feel at all.

   However. She proceeded to look at the wound and didn’t look happy. Of course, where the beads had been, the wound hadn’t fully closed. She was also convinced that it was infected and proceeded to tell me that she was going to put a plaster over the entire area and it would have to stay on for a week.

   Alarm bells went off in my head on the way home…growing up, I always learnt that an open wound needed air to close. Not be completely enclosed. But, her being in the medical profession, dad and I trusted her opinion. So guess what…7 days later when it was time to remove the plaster…the plaster had turned to jelly and it was completely infected.

   So off I went to the doctors office where it was confirmed that it had become infected and I needed to go on antibiotics for 10 days.

 

Becoming ‘Normal’ Again:

   A couple weeks after the surgery, I was finally able to get in and out of the shower on my own, I was able to climb into my bed and I was finally able to move around, without moving at a snails pace.

   Reintegrating into society was different though. If you have read my previous blog posts, then you know that I suffer from anxiety. I had gotten so into my head over the previous weeks…scared that someone would hit my stomach and that would open the stitches again. Luckily that never happened…but I had to be careful.

   Even though I was physically starting to look ‘normal’. I still had to be careful. I learnt that the hard way when I decided to make my chunky veggie chilli (chunky-veggie-chilli/). Chopping the vegetables hurt. I ended up in bed for the following 2 days in pain. The frustration was unreal!

Life After:

   So here I am…writing this 3 months after my life changing surgery. Still a far way off being in full health. But a lot closer to that than I have ever been! I’m learning now what its like to have a healthy human body. The swelling is still going down and I’m feeling better in my skin.

   The one thing that no one warned me about was how intense the changes would be and there was no mental preparation. I also didn’t have any followup appointments for how I’m coping mentally. So the last couple months have been hard. I’ve been dark, but I’m working through a day at a time.

   Now I’m just looking forward to all the things that I couldn’t do before!

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Living with a hidden (not so hidden) illness…Part 3

So here we are…a couple months after the last update and what a couple months it has been!

So after the hospital visit and finding out my surgery date, I have been busy getting the house and office pod ready for my recovery and getting mentally prepared for what was going to happen. Mum and I also planned a trip away for before the surgery as a distraction.

This trip was the perfect thing and exactly what I needed. We first as a family went to Holland to see the rest of the family for a couple days, and then mum and I went on to Paris and Disneyland Paris for a week. We came home only 2 days before my surgery so I didn’t give my brain the chance to panic too much. The day before my surgery was just spent buying the last few bits that I would need in the hospital and stuffing my face at Yo Sushi.

The morning of my surgery started early…the alarm going off at 5am so that we would arrive at the hospital for 7am. It was a bit of a blur once the hospital gown and compression stockings were on, a blur of blood draws, blood pressure and heart rate monitoring and questions. Before I knew it though it was time to walk to the operating room.

So now for the details…I panicked a lot before my operation and actually needed to go on oxygen for about 15-20 minutes before they could put me under anaesthesia. When I came back out I was in the recovery room and I remember falling asleep a lot. One of the times I was awake, I remember the doctor came to see me and all I remember was her telling me that there were more fibroids than they had thought and I asked them if they were able to save my womb, which they did!!! I fell asleep again and before I knew it, I was back on the ward waiting for my parents to come in.

When they came in they both told me how worried they’d been. The surgery was only meant to be about an hour…however, I had been in for 4 hours. I was also super pale as I had lost a lot of blood during the surgery and had had 1 transfusion. The pain was unreal and I felt super nauseous. I also had no appetite and only ate a little bit of a yogurt and a few sips of hot water.

The next day was horrible. It started with another blood draw at 5:30 in the morning, followed by multiple blood pressure and heart rate checks. This was followed by the nurses telling me that they want to get me up into the chair so that they could take the catheter out and change the bedding. For anyone that has had abdominal surgery (my incision was through the abdomen from my belly button down) you know that it is incredibly painful to move your stomach muscles. I was told to use my arms to push me up out of bed however, I still had my catheter in and on my right hand I had a canula with 3 ports which pulled when I moved my arm, so using my arms was hard. But somehow with the help of the nurses, I managed to get up and into the chair. I tried to eat a bit of toast with jam and some hot water but I instantly regretted that. I felt the waves of nausea build and I tried to hold it in as much as possible. However my body had a completely different idea. Before I knew it I was reaching for the sick bowl. The pain that followed was unbelievable, my pain killer pump didn’t even make a dent.

Several hours later, my parents came in along with Althea (essentially my second mum), however I cannot remember much of what happened at all. I was still so out of it. All I remember is that I had another 2 transfusions but my levels were still very low. They were still very worried about my heart rate and blood pressure.

The next few days were a bit of a blur of more blood tests and blood pressure readings. But before I knew it, I had been taken off my pain pump and put on oral pain killers. I was able to walk a little more and able to walk to the toilet on my own. But after 3 nights I was ready to go home. The plastic bedding and no air movement just meant that I was boiling hot all the time and severely uncomfortable. So Monday morning I was convinced I was going home. I felt well enough to go home. However, my haemoglobin levels were still very low and they wanted to bring it back up to what it was pre op before I could go home. So one final blood draw was done and several hours later I was ready to go home!

Now my recovery is far from over. Walking goes at a snails pace and stairs still have to be taken slowly. But I’m getting there, pain is almost nonexistent now and every day I’m able to do more and more.

So when they opened me up, there were more fibroids than they thought. They reckon there were close to 100 fibroids in total with 5 large masses (15cm each). They also estimated that my fibroids had taken about 45% of my total blood supply and I lost around a litre of blood during the surgery. The best news though was that they were able to save my womb! I can still have kids!!

But for now…there’s still a long road to recovery but I am on the way 🙂 So far…this is the end of this chapter!

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Sorrow

We are all different. We all experience events differently. We all have different coping mechanisms. When life gives you lemons, make lemonade…. some say… don’t worry about tomorrow, is what God says… I care for you today and every day…

But then you hear the words from a doctor no one likes to hear… we are talking about lengthening life, not healing… and suddenly the crazy world is upside down….

My previous post I referred to my father in law being sick… now we know how very serious it is…

what to do next…. everyone has words of advise… diets to follow, pills to take… all meant very well ofcourse. No one wants to say goodbye…even if this world is not our home, we are still at home here and saying goodbye till we meet again is very hard.

How do I cope? I am very good at pushing things away… not thinking about it is better than trying to deal with it.. other members of my family are different… we are all so busy and suddenly we are all forced to slow down…

I have spent these last days in an imaginary world… a world of make believe.. where miracles happen… even if it’s just fairy tales, I know my God is in the miracle business… not all miracles have happy endings… but for sure our end is sure… He will come back to take us home. We will be reunited with our loved ones.

And that keeps me going more than anything!

Let these flames be a prolonging of my prayers….

Living with a hidden (not so hidden) illness…Part 2

So here I am almost a year after writing part 1. I thought it was about high time that I updated everyone with my situation as a lot has happened over the last year!

So back in the beginning of the year, I had just had enough of waiting and so I made another appointment with my GP to chase what was happening. I finally found a GP who took my case seriously and chased it up for me straight away.

Fast forward a couple months and here I was waiting at the hospital for my first appointment in almost 2 years! I knew that I wasn’t going to be seeing the same specialist as last time which made me a bit nervous. However, the second I met my new doctor, that anxiety went away. I explained my case to him and he was upset to hear that my case had ‘slipped through the cracks’ for so long.

Well this is where it all changed for me. Normally these appointments only last about 10 minutes and I tend to come out of them still as confused about what is happening than when I went in. Well this time, the specialist took a long time to really understand my situation and to update the notes on the system to include as much detail as possible. He took the time to really explain to me what was happening inside my body and what my options were. Well, lack there of. He called in the head of department and between the two of them, they fully discussed my situation with me and put me at ease.

After a quick feel of my abdomen, they noted very quickly that unfortunately my fibroids and my uterus had hardened meaning my only option was for surgery. And not just a small surgery which we had all hoped for…but quite a serious one. My fibroids had hardened at 15x15cm. This meant that my uterus had grown to the size of 7 month pregnancy. All of these factors meant that the surgery incision would have to be a midline incision from above my belly button…all the way down. They tried to put me at ease saying that I should get an anchor tattoo afterwards to hide the scar and something that is fitting with me.

After about 5 minutes of laughing and coming up with ideas…they sat me down and talked me through the procedure and the recovery time. This was the bit I was most afraid of. When the doctor starts the sentence with ‘There is one more thing and some women think that this is outrageous…’ my mind instantly fills in the blanks. I knew a hysterectomy could be on the cards for me. I had been previously told that the risk was extremely high considering my situation. However my chance was actually at less than 1%!!!! AND the chance of having kids afterwards would be high! So not only would I be getting my life back, but my chance of having kids wasn’t completely ripped away from me!

45 minutes later I finally left the hospital knowing exactly what the plan of action was. And here we are…less than a month away from my operation. Yes my anxiety plays up from time to time thinking of all the ‘what ifs’ but I am just going to take it one day at a time.

First things first…I have a lovely trip away with my mum for a well deserved holiday (for mum) and a great distraction for me! See you on the other side!!

R and R

I know that I have been very quiet on here recently and the reason for that was that I took a break. I took time for myself and learnt to listen to my body.

The last couple months haven’t been easy for me and my mental health took a huge hit. Depression had a strong hold on me and I couldn’t find a way out. But after taking this time away from blogging and social media as a whole, I’m happy to report that I am much better now! My mental health is in a better state and I am actually looking forward to the upcoming events in my life.

I’m currently writing this from Costa Rica where I am really taking the time to do the things that I love to do…crochet, reading, photography and just binge watching Netflix. Allowing my brain and body to relax and to just be myself again. I’ve missed enjoying the day to day things and I feel like I can and am now!

So instead of all the doom and gloom that I had been seeing since the beginning of the year, I am now able to find joy in every day life. So I’m back now with lots of blog posts in mind. Be ready!

Hope you’re all having a great week!

Costa Rica 2018

Exploring London…

A couple weeks ago I realised that I had never been to London on my own. I knew the reason for this was my anxiety, but that same week I had decided that I was going to fight this. I was going to fight my depression and anxiety head on and not let it beat me.

So here I was on a Wednesday morning, packing my rucksack with everything I thought I would need and off I went. After a quick stop off at Dad’s church, he dropped me off at Watford Junction and I was on my way…no turning back now…trust me, the anxiety was winning…my illogical part of my brain was telling me that everything would go wrong and I should just go home and lie in bed. But I thought the better of it and pushed through.

After a quick check to make sure I had enough on my Oyster card, I ran into one of my old school friends and instantly the anxiety reduced. Instantly I was calmer. Turned out that he was headed for the Science Museum which is directly behind the Natural History Museum. The anxiety for travelling had almost completely disappeared at this point and the other fears and anxieties built up. But again, I didn’t give in. I powered through.

About 30 minutes later and there I am, standing in front of the Natural History Museum. Now my plan had been to spend the day there, meandering through all the different sections and reading as much information as possible. However, the second I walked through the doors, I realised that that wasn’t going to happen. It was so incredibly busy, and boiling hot! Not a great combination when you are already struggling with anxiety!

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I tried to enjoy myself as much as I could but after about an hour, I gave in and left. I moved on to the Victoria and Albert Museum, hoping that that would be quieter, unfortunately, it wasn’t. So after a quick dash through the V&A and a quick pep talk from someone special, I picked up the guts, ignored my anxiety and decided to go to the British Museum.

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The British Museum has always been one of my favourites as it includes a lot of ancient Egyptian history and Ancient Greek history, two of my favourite topics!! Yes, it was busy and hot like the other 2 museums, and yet my anxiety was a lot less there.  I was able to distract myself with all of the awesome history that surrounded me. I drowned out the illogical brain and all of my anxieties, I was actually able to enjoy myself!

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Multiple hours were spent here just wandering around looking at all the different artefacts and then realising two important things:

1) How many plaques said ‘now missing’ or ‘now destroyed’ and it made me sad to think about how much history we have already lost and would never be able to discover!

2) That the Natural History Museum didn’t have any information that I saw about the current crisis and what we can do to help to stop more extinctions, etc to happen.

The journey back really tested my anxiety and fear though. It was just before rush hour, but people were already there and pushing. I decided to let one train go as it was so busy and full that I knew it would be a recipe for disaster. The next train was practically empty and I was able to avoid a near-certain panic attack.

Now for those who don’t suffer from anxiety, this day just sounds pretty calm and ‘normal’. For me, however, it was a HUGE step. It allowed me to see that I can push through and not let anxiety run my life. It also showed me that London isn’t such a scary place to explore on your own! Would I do it again? Definitely!! I’m already planning my next trip in!!

If you suffer from anxiety…what do you do to stop it? How do/did you overcome it?

My Story Isn’t Over Yet…

As I’ve mentioned before…I suffer with anxiety and depression and as much as I would love to be happy all the time…sometimes I slip. And what I have come to realise is that its okay! It’s okay to not be happy all the time…it’s okay to slip and be down. Life is tough and sometimes you end up questioning everything. That has been me for the last 3 weeks.

Certain life events over the last couple months has meant that I have ended up questioning every aspect of my life! Now those of you who know me, know that my life has been far from easy. I have been through a lot and I’m sure that there will still be plenty more ups and downs to come. But you know what…my story isn’t over yet! My past does not dictate how I will live my future.

Someone super close to me introduced me to ‘Hamilton’ by Lin-Manuel Miranda and there is a line in it that has really stuck to me. ‘There are a million things I haven’t done…but just you wait!’. I am only 26 years old…I still have the rest of my life to go, plenty of time to do the million things I want to do. I can also look back at what I have accomplished…I have completed a research masters degree, which if you’d asked me whether I would have done one 10 years ago, I would have said no, and planning on doing a PhD.

Whilst talking to my best friend about my situation lately, she reminded me of another line in ‘Hamilton’ and it goes ‘I am not throwing away my shot!’ and I decided this week that I won’t. I won’t let my depression and anxiety get the better of me. I am going to fight it and I’m going to get better. I won’t let myself worry about whats going to happen in 5-10 years time. I am just going to focus on what I want to achieve by the end of 2018.

I also just want to thank those closest to me who have been a support through this tough time for me! I really appreciate every single one of you and I love you all dearly. I know I can be a lot to handle and that I say things I don’t mean when I am down. But know that I really do love and appreciate you!

So I might have a million things I haven’t done…yet…but what about you? What is a song lyric that sticks with you and helps you?

Life Lessons

As I’ve mentioned in a previous blog post…life doesn’t always go the way you want it to or the way you’ve planned. When you look at the news headlines from the last couple weeks, one thing has been apparent…more and more people are committing suicide. So I asked myself why? The most common answer that kept coming forward for me was loneliness, depression and low self esteem. The three go hand in hand and feed each other.

As someone who suffers from anxiety, depression and a low self esteem, it is easy to be told to just speak up when you need help. But it really isn’t that easy, when I am down I socially isolate myself. I don’t mean to do it…I don’t want to do it either, my brain tells me that I’m being silly but my anxiety ridden part of my brain comes out with all the ‘what ifs’. Now I’m not saying don’t be there for those who are going through this, all I’m saying is that it isn’t black and white…gives us time.

The self esteem issue is one that is growing, I’m seeing the younger generations struggling more and more with their self image, and to be honest I am too. Media nowadays is constantly bombarding us with what is deemed ‘beautiful’. Gone are the days when it used to be ‘beauty is in the eye of the beholder’…freckles are labeled as imperfections. Curves, which used to be ‘the fashion’ is now considered majorly unhealthy and ugly…We are in a society where instead of building each other up, we are tearing each other apart! And then we get shocked when a young person or a celebrity commits or attempts to commit suicide.

We are all unique, shouldn’t we be celebrating that!? I dread to think what it would be like for there to be 2 of me…my parents would definitely agree there! But I also know that they wouldn’t want to imagine a world without me…and I wouldn’t want to imagine a world without my friends or family. So rather than tearing each other apart…lets celebrate what makes us unique!! Instead of finding fault in someone…find something positive in each person you meet!

We are all beautiful! Whether its your freckles, or your smile…we are all beautiful! Being brought up in a religious family, my parents used to always tell me ‘God doesn’t make things that aren’t beautiful and perfect’ and ‘the God who made the mountains and seas, felt like the world needed a ‘you’’. Those stuck with me and helped me when my self esteem was at the lowest.

I still struggle on a daily basis with my self esteem but I try every morning with a daily affirmation that I repeat to myself all day when I feel low. Some days those affirmations are ‘I release negativity from my body and mind’ to ‘I will not compare myself to others. I stay in my lane. I compare myself only to how far I have come and where I want to go.’

So what about you? What is your affirmation quote of the day? What helps you when you are struggling with depression, anxiety, low self esteem or loneliness?

Taking Time for Yourself

It’s important to, once in a while, take some time for yourself…I did just that this last weekend. After dad being away for 2 1/2 weeks last month…my anxiety picked up…it hit me out of nowhere and for those of you who also have anxiety…you know that it isn’t something that you can just stop…

Anxiety can be crippling, it can make you scared to leave your house, talk to new people, try something new…but you also know that it is a completely illogical fear. I’m known as an over thinker…I over think pretty much everything in my life and so my brain is a constant bundle of things I need to do and scenarios that would never happen. I have yet to find a permanent solution where I can battle my anxiety and overthinking. For right now though a few hobbies keep my mind distracted and this last week and weekend I really focused on myself and pressed the ‘reset’ button in my brain.

So last week, Dad and I took a trip down to Cornwall…dad had an event that he was playing the drums at and I used the time to just relax. We rented an airbnb in Porthtowan just minutes walk from the beach. Now for those of you who know me know that there is something about the ocean and the beach…I feel like I’m at home. My love for marine biology intensifies whenever I’m near the beach and I always feel like the ocean is calling me…my mood instantly changes when I see the ocean, no matter the weather…I cheer up…I relax…I breathe more deeply and think more clearly.

I had so many things planned for that weekend, however there were 2 factors that hindered those plans and could have ruined it all for me. The weather is not something you can control and bank holidays in the UK are notorious for having poor weather. Well, the weather in Cornwall lived up to that…I received pictures from several important people in my life showing the blue sky and talking about how hot it was…I looked out my window and all I had was dense fog, the sun wasn’t anywhere in sight…But I wasn’t going to let that stop me from being on the beach! Now the second factor was a little more annoying…2 weeks before I had managed to dislocate my right shoulder (yes I am right handed) and was still in significant pain and arm still in a sling. So suddenly things like picking up trash on the beach, or trying to take a picture with my camera, became a lot harder to do. Yes we had the dense fog for 2 out of the 3 days we were there, but the last day the fog finally lifted and I remembered why I love the ocean and the beach. The colours of the sand and the blue hues of the water…there is just nothing quite like it for me.

Now getting back to what I did to press the ‘reset’ button, I went for numerous walks on the beach and along the coastal path along the cliffs and spent time staring out to sea, anxiously looking to see if I could spot any wildlife (some seals but that was it), I explored some of the numerous ruins that Cornwall has to offer. Spent time reconnecting with old friends, building connections with new ones and drinking multiple iced lattes and peach green tea lemonades. Oh and who can forget the ice creams!!

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Unfortunately, time always flies and before I knew it we were home and the instant lull in my mood was noticeable. I knew I had to do something to stop myself from slipping back into my anxiety driven state. I ended up looking through my yarn stash and decided to crochet something again. Recently I had been knitting a wrap for myself but I really wanted to crochet something. So I picked a pattern and off I went…There is just something about crocheting and knitting that keeps my mind preoccupied and allows me to relax.

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Some people might say that it is selfish to take time for yourself. But if you don’t, then when do you get the time to be yourself…allow yourself to grow and to relax. Sometimes that means a mini break away to your ‘happy place’ and sometimes it means just picking up an old hobby. All I know is that since my mini break…my anxiety has lessened and my mood has improved.

What about you…what is your happy place? Do you have anxiety? What helps calm you down? Let me know in the comments! I’d love to hear from you!!

Have a great weekend!

~ A cloudy day at the beach, is still a day at the beach – Unknown ~