‘Chapter 1,388: You STILL don’t look sick!’

Another week has passed and I’ve still not got any better at regular blogging! However this week has been different for me. I’ve wanted to write since last week but I’ve not been able to find the words. I’ll take you back to last Tuesday. I’d been struggling with all the usual Endo naffness when things got even more helpless.

I had my follow up appointment for my op at the hospital and I was nervous and excited at the same time. I knew my surgeon would been keen to show me all of the photos from inside the op and I really needed the validation that it all really happened and that my pain was real (silly, I know but the doubt is so hard to shift when you’ve been told it’s ‘all in your head‘ for so many years). I’d felt like it had never happened. Everyone was back to normal but me. I still wasn’t feeling right and I needed to know why.

My surgeon is the most amazing man. He has never once doubted my pain and during the appointment, made it even more evident that he cares about his patients.

I was his last appointment of the day but he treated me just like the first. There was no rush, no pressure to get to the point and certainly no need to feel ashamed. I had my Mum with me for moral support and he spent time talking to her to make her feel comfortable too.

As I had expected, he wanted to show me the photos from the op. He showed me every organ inside my abdomen- he had worked tirelessly and so thoroughly to make sure he missed nothing at all. When he got to the photos of the Endo, I felt my eyes prickle. I could not believe how much was there. He told me how even he was surprised and how it was so well hidden under my bowel. I was so grateful that he’d been so persistent to look there to find it and remove it. I believed him completely when he told me he was adamant that I was Endo free at that moment.

But there was something niggling me. I could see that he was right… but why wasn’t I feeling any better? My symptoms were the same and I’d even acquired new ones. I plucked up the courage to ask, expecting him to shoot me down like my last surgeon had before.

To my surprise, he told me he knew I was going to say that and then showed me more photos. During the op, I’d also had a Cystoscopy (camera in the bladder- glamorous huh?) which showed that my problems stretch much further than just Endo.

He diagnosed me with another incurable, chronic, invisible condition called Interstitial Cystitis (IC– read more:https://www.ichelp.org/about-ic/ ) which basically means the lining of my bladder is cracked, like a very well used elastic band. There are different types and I’m not sure on the ins and outs of mine yet but the photos looked scary and have stuck in my mind since. There are ulcers and many vessels that should not be there, as well as a lot of inflammation. This explains why my pain won’t budge and also explains the UTI symptoms I keep getting. There was some relief in knowing this. And then of course, there was fear.

As he talked me through the possible treatments (including scary needles, catheters and surgeries) dread swept through me. I still don’t know how I will deal with all of this.

We agreed to try the IC elimination diet first ( https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/elimination-diet/) which is pretty much gluten, chocolate, alcohol, citrus and FUN free. I have to record everything I eat and the symptoms I have. As you can imagine, I’m feeling less than excited and enthused by this.

In fact, what I’m really feeling is hungry (it’s only day 1!) hard done by and alone. I know there are worse illnesses and some have it so much harder than me BUT why has this happened to me? Having spent so long suffering with one illness, to being free from it (albeit momentarily), to finding out there’s another one… It’s not fair.

So I am now facing a life with 2 chronic illnesses that probably link and laugh at me together when I’m curled up in agony. The most frustrating thing is knowing that I still don’t even look sick. This fools so many people- ‘She must be okay, she went out for dinner!’, ‘She looks fine!’, ‘She’s laughing so she can’t be that sick!’

Enough. I’m sick- Deal with it- I have to!

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Try, try and try again

I’ve FINALLY made it to half term! A week when every non-teacher pictures us teachers laying in the sun, sipping a constantly full glass of something alcoholic. I wish I could say that this is what I’m doing right now however this is never a reality for us educators!

This week is more of a ‘working from home’ week than a week off. It’s report season, so that is where my focus is, along with the English planning, marking and classroom tidying I have to do. The only perk to this is that it’s on my terms and I can do this all in my pyjamas!

The last half term has been the shortest of the year and yet somehow the hardest. I have battled so many new and annoying symptoms of my Endometriosis, while trying to keep the energy up in my class of tired children.

Last week, my energy ran out and my body said ‘NO’.

I had been trying as many new different coping and management strategies as possible. One which I had found successful a few years ago, was daily exercise. I had been taking myself off for regular gym, swim and ballet sessions and I was enjoying myself! Although my tummy was still complaining and my fatigue was still lurking, I felt more confident and motivated in myself, which gave me the strength to deal with these problems. All was going well until last Monday evening. I had just had an amazing work out and I was full of energy. I even had enough energy to wash my hair and shave my legs during my shower! Suddenly, I started to see bright, flashing and what can only be described as ‘zig-zaggy‘ lights in my left eye. I felt like I was in a weird bubble. I got out of the shower and sat on the bed. When I closed my eyes, it was still there. It lasted for around 20 minutes and then my vision began to cloud over. I was terrified at this point, so I phoned 111 for advice. They told me to go straight to A&E, so I did.

I sat in A&E from 7.30pm until 12.00am, when I was finally seen by a Doctor. By this point, the flashing lights had stopped but a headache had taken over. The Doctor was lovely and understanding. When I mentioned my Endometriosis, she actually knew what that was and took me seriously when I suggested that this could be linked.

I was sent home with a suspected Retinal hemorrhage and told to go to the Eye Casualty department early the next morning. After dozens of nasty tests and scans, the Docs were happy that I had suffered an ‘Ocular Retinal Migraine’.

They told me that this was most likely caused by stress. I agreed. If there is one thing I have learnt over the last few years, it is that stress is a huge trigger and it definitely finds the weakest part of my body to attack!

I went back home and snoozed the rest of the day away, hoping for some relief.

It got me thinking about the stresses in my life. I realised that yes, my job is probably at the top of my list of stresses but I know that I have been doing everything I can to manage that stress. The problem with this is that I have now learnt to stress about being stressed and having time to relax!

I have no doubt that my Endometriosis was partly to blame for this attack (I know many others have these symptoms and I was due to have my ‘special lady time‘ at this point) but I know now that there is not one set way to relax and manage stresses and symptoms. What works for one person won’t always work for another and equally, what works for me one day won’t necessarily work for me the next.

I’m now going to start listening to what my body is telling me. If I’m sluggish, I’ll exercise. If I’m dizzy, I’ll eat clean. If my kidneys hurt, I’ll keep clear of wine! If I’m tired, I will sleep! And if I fall, I won’t give up, I will just try, try and try again but maybe just a different way!

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Shove it up your endo, Endo!

We all have those days. The ones where you just don’t feel like you. The ones where nothing seems to be going right. I have those days relatively frequently.

Some days, I feel fed up, some days I feel emotional but today I’m just plain angry!

I’m angry that my body is exhausted and I can’t bring myself to stand up any longer.

I’m angry that I can’t muster up enough strength to go for a swim when I really need to swim to feel better.

I’m angry that my belly is so bloated that I can’t fit into anything other than my pj’s and that I feel like it’s my own fault for dressing in a skirt with a high waist band to make myself feel slightly more confident.

I’m angry that the pain in my tummy isn’t just in one place and it moves as I sit, stand and lay. As soon as one area feels better, another begins to throb. And when it’s not the tummy any more, it’s the legs or the toes or the areas you really don’t want people to know are hurting!

I’m angry that alcohol is the only thing that helps me to sleep through the night but the thing that makes me feel so awful in the morning.

I’m angry that the brain fog is so thick that I can’t remember the names of the children I see every day. I’m sick of finding post it notes I’ve written to remind myself of simple things, stuck to the bottom of my shoes. I can’t trust my calendar any more as I’ve been on a spree of writing the wrong dates up.

I’m angry that I can’t keep up and I’m watching my life pass by me without being able to take full advantage and join in. I’m 27 and I’m grieving the life I thought I’d have by now.

I’m angry that I feel like I’m not enough and too much all at the same time. I can’t do things to my fullest ability anymore and I’m becoming a hassle and a burden to my friends and family. I’m always cancelling my plans or complaining about my illness and I hate it!

It’s just not fair and I’m all about the positivity but today I just want to say – ‘shove it up your endo’ to my Endo!

Enough now- rant over… until the next outburst!

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Kinetik wellbeing TENS machine review

Long time no post! I’ve been so busy with work and the occasional swim that I’ve not had any spoons left to write a post, so I’m making a concerted effort to get back to it this week! What better way than a ‘Tried And Tested Tuesday’ special?!

Today I want to review my most favourite Endo weapon- my TENS machine!

I have had this for a little over a year now and I cannot fault it!

My mum had always used TENS machines for her back so I was slightly dubious about using one on my belly but I tried it and I’ve not looked back since. The Kinetik Wellbeing TENS machine has 2 ports with 2 pads on each (4 wide pads in total) which can be placed and spread out over all of my tummy. There are 8 settings to choose from to massage and interrupt the pain. It is rechargeable and in my experience the charge lasts for hours!

The strength can be adjusted for each setting and each port. Best of all, it is portable and tiny, which means I take it everywhere with me and nobody knows when I’m wearing it!

The only downsides are that you have to re set the programmes every hour as that’s the maximum you can have it on for at one time but it’s easily done and not too much hassle. There is no case for the machine however because it’s so small, I use a standard make up bag to carry mine in my handbag, making it even more discreet ☺️

As an added bonus, it is pink and looks a little like an old school ‘Ipod mini’.

I couldn’t live without my TENS machine. It’s provided me with a year and a bit of relief when nothing else touches the pain and for only around £30 from Argos (prices and places may vary) I cannot rate this product highly enough. The pads are replaceable and can be bought in most chemist’s, as well as online ( https://www.amazon.co.uk/Kinetik-Wellbeing-TENS-Reliever-Adhesive/dp/B01J5V05Z4/ref=mp_s_a_1_3?crid=2SV87AP443QXN&keywords=kinetik+tens+machine&qid=1557260221&s=gateway&sprefix=Kinetik+ten&sr=8-3 )

Its 5 stars from me yet again!

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Happy Tuesday everyone!

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Elysium Spa Epsom Bath Salts (Lavender) review

It’s Tuesday again which means it’s time to review another product that I’ve tried and tested to help me during my flare ups.

Today is the turn of my new favourite before bed treat, my Elysium Spa Epsom baths Salts!

Again an Amazon special (https://www.amazon.co.uk/ELYSIUM-SPA-LAVENDER-EPSOM-SALTS/dp/B07BXKNDV6/ref=mp_s_a_1_8?crid=2ZU9RWZHZR34U&keywords=lavender+bath+salts&qid=1556046836&s=gateway&sprefix=Lavender+b&sr=8-8) for just under £5.

I had read about how Epsom Bath Salts have been known to help relax muscle spasms and many Endo warriors who I follow on Instagram have used and recommended similar products. Lavender is also a known relaxant and helps many people to sleep- a perfect combo if you ask me!

I’ve now used these countless times and I have to say I’ve noticed a huge difference. My leg pain and numbness is next to nothing on a night when I’ve used them and I sleep like a baby! I also love the notion of having a bath to look forward to, to clear my mind and have some ‘me’ time. Plus, the Lavender smells AMAZING!

The packet says to add 1-2 handfuls to a running bath however I add 2-3 just because it smells soooo good! I soak for around 20 mins which is plenty for me as I get a tad restless after sitting still for that long!

I rate this product as 5 stars and would thoroughly recommend this product to anyone who suffers with leg and joint pains/numbness, especially at night.

I’m looking forward to trying some more from their range!

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Travelling with spoons

Hello! I have been relatively quiet on the blog front for the last few days as I have been here, there and everywhere!

Travelling is always challenging for anyone- the long days, weird food, cramped spaces and too many people! However for people who live with chronic illnesses it can be even more challenging!

This time last week I was getting ready to board a plane to Benidorm for a friend’s hen Weekend. We had started the celebrations around 10am and to be honest the prosecco had worked its wonders on my body by around midday! Having not indulged in alcoholic beverages since before my op, I was nervous about how I would manage and whether it would make my tummy swell. Luckily, it wasn’t my tummy that was the issue, my head however was a different story!

Another concern of mine was the toilet situation! My endometriosis is along the left side of my bowel and any stress, change in routine or even sitting down wrong can cause a flare up and more often than not, a toilet is required urgently! I hadn’t managed to go at home as it was not the right time (like I said, routine is everything!) and I certainly couldn’t go in the airport as I hardly knew any of the other hens and evacuating the loos is not the way to make friends 😂

By the time we had arrived at our appartment, we had been travelling for nearly 12 hours and I was well and truly backed up! We also hadn’t eaten properly which is another trigger for disaster belly for me!

Once we had eaten and I’d had a decent sleep (and a cheeky nip to the loo while everyone was fast asleep!) I felt right as rain!

The next few days were slightly more challenging. As a veggie, I struggled to find anything to eat that hadn’t once walked on the earth so I was stuck with a LOT of beige food. Most of the girls on the weekend had also experienced the effects of said cuisine and I found myself handing out my go to Endo belly remedies!

Here are a few items I ALWAYS travel with to keep my belly as settled as Possible!

Peppermint tea- life saver! It helps settle my tum when I’m feeling sicky or bloated
Buscopan (10mg)– an anti spasm and bloat reliever available over the counter. I’ve been using these for over 10 years and although designed for IBS relief, all women suffer with bloat from time to time!
Deep heat pads- in the absence of my hot water bottle and tens machine, these pads do a good job to provide some relief for tummy aches and back pain. I wore mine in 25°c heat and I was loving it! They last around 5 hours.
Paracetamol plus- 2x500mg of paracetamol with caffeine every 4-6 hours keeps some of the aches away.
Trusty iboprufen- works well as a buddy to paracetamol and reduces inflammation. 2x200mg every 6-8 hours.

Although I faced challenges and a lot of fatigue, I was so proud of me for not letting my illness rule my life. I’ve spent the last week catching up on sleep but it was totally worth it. People won’t always understand why you can’t join in as much or why you have to duck out early, especially as you don’t always look sick but don’t let that get to you. Just be proud of your little wins and spend your spoons wisely!

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‘Scent and Soul’ long hot water bottle review

With all the new things I’ve purchased and tried recently, I’ve decided that Tuesdays will now be my Review-s days! So today I am introducing Tried and Tested Tuesdays! Tah-dah!

Last week I purchased a long hot water bottle from ‘Scent and Soul’ off of Amazon (https://www.amazon.co.uk/Scent-Soul-Luxury-Water-Bottle/dp/B07MPDYGJ3/ref=mp_s_a_1_fkmrnull_1_sspa?keywords=scent+and+soul+long+hot+water+bottle&qid=1554807093&s=gateway&sr=8-1-fkmrnull-spons&psc=1)

Having relied on trusty standard hot water bottles for well over a decade, I decided to give this a try!

The hot water bottle is 63cm long and is made from natural rubber. It is BPA free so technically you’re saving the world by buying it! It also comes with its own cover, available in a selection of different colours and textures- I have the knitted grey one as this fits my colour scheme in my house! Finally, there is a tie so you can attach it to your waist if you’re on the move- although I haven’t tried this yet!

I can honestly say it’s the best £15 I’ve ever spent! Since it arrived, it has not left my side once!

After my op, driving has been quite challenging, especially because the seat belt cuts into my incision sites but I have been putting the hot water bottle across my tummy, protecting it from the belt and keeping my aches and ouchies to a minimum.

It’s also been a comfort to sleep with. I don’t know if I’ve mentioned it enough 🤭 but I’ve been suffering with numb and painful legs at night time. I’ve been sleeping with the hot water bottle tucked between my thighs and have loved that I’m still able to feel it on my tummy AND I can snuggle it all at the same time! BONUS!

I’d give this product 5 stars and I would definitely recommend it to anyone! My other half has also been sneaking snuggles too so not just for us ladies!

⭐️⭐️⭐️⭐️⭐️

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Learning from Lewis

It has taken me hours to write this post. Today marks the two year anniversary of the death of my very special cousin, Lewis.

Lewis was 21 when he slipped away from us. He died 5 days before his 22nd birthday after a three month battle with pneumonia, among many other complications. When he passed, he left behind two parents and a younger brother, who had devoted their lives to making sure he had the absolute best available to him. Lewis was born prematurely and consequently had very severe special needs. He was non-verbal, fed through a tube in his tummy and had spent his childhood in and out of hospitals, including Great Ormond Street, for many different health problems. He defied death so many times and showed his stubborn genes.

Despite all of this, Lewis had the most amazing life. He loved and was so loved by everyone who met him. His funeral was filled with hundreds of people whose lives Lewis had touched. I always described him as my inspiration and it is still true today, for so many different reasons.

There were nearly 4 years between Lewis and I however I spent most of my childhood visiting him and my other cousins. We are a very close knit family and more like brothers and sisters than cousins. I always looked forward to spending time with Lewis because I loved how we could communicate through so much more than speech. He had the most amazing smile and infectious laugh. He was so clever and eager to show things that he had learnt. He would always take me by the hand and lead me around his house to show me the light switch that he’d learnt to switch, the doors he’d learnt to slam and the ball he’d managed to spin effortlessly between two fingers.

He loved cars. He had collected what must be around 1,000 cars in his lifetime and each one had gone under careful, close inspection. His most favourite was ‘Yellow Car’. He has it with him now but us cousins have each got one similar yellow car from his collection. Yellow was his favourite and now it is mine. I never saw the link before, but here it is, staring me in the face. Yellow is the colour of Endometriosis fighters. Yellow is the colour of strength and he was the strongest little man I’ve ever known.

Along with his love of cars, when Lewis was younger, he adored helium balloons. He would play with them and they would make him screech with laughter. Balloons became something I associated with him and since he has gone, I have seen so many balloons floating in the sky, I can hardly believe it myself. The first was when I visited his beautiful grave, a few months after he had gone. The next was a red hot air balloon that hovered over my flat, during one of my lowest times. It was there every morning for over a week, giving me the strength to get out of bed. The last time was a fairly recent one. I was having one of those days at work and I was on playground duty, contemplating whether I could do this any more. I looked across the playground to children shouting and pointing to the sky and my mouth opened. A balloon floated across the sky and over the school. I knew this was a reminder to keep going.

I wanted to know more about Lewis from an early age. I always knew I wanted to work with children just like Lewis so when I was at school, I spent two weeks on work experience at his specialist school. I had the most amazing time and I knew that this was my calling. I then went on to train to be a teacher with a specialism in special educational needs.

Although I now work in a mainstream school, I have experienced teaching children with a variety of different needs in every class I have had and I thank Lewis every day for this because without him there is no way I would be doing what I do. He was the reason and he still is.

There are so many things I want to say about him but I can’t find the words. I think of him every day and I miss him today as much as I did when I answered the phonecall I’d been dreading. I can still feel his hand in mine, the way it always was when I went to visit and the way it was when I said goodbye to him.

I know that people believe different things about what happens when loved ones pass away. I take great comfort in the little things that remind me of him, whether it really is him or not. Everyone can learn a little something from Lewis. You may not be able to change your genetics but you can change your outlook on life. However tough it gets, whatever life throws at you, try to find something that will make you smile and laugh hysterically.

Don’t let that little yellow balloon float away from you, grab the string and let it take you somewhere. The only way is up, if you let it.

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Keep on keeping on

Yesterday was my first day back at work.

The nerves, excitement and late night leg pain kept me awake until around 3am and my alarm interrupted my micro slumber at around 6am- already asking for trouble.

The previous evening, I had been on a test drive to the shops. It wasn’t too bad but I felt queasy and faint for a while after, so I was nervous about the 40 minute commute, especially on minimal sleep!

Nevertheless, with my sick bowl and belly blanket in tow, I bumbled up the M3 (my least favourite stretch of tarmac!) to work.

I was greeted by smiling staff and welcomed back with opened arms by my 30 little jumping beans! Relief swept over me as I realised it would be okay…

Until lunchtime- then I was no longer okay. My tummy began to ache and I felt sick and exhausted so I decided to call it a day and come home again.

As I drove back down the M3, I felt a pang of disappointment in myself. I saw the faces of the children as I told them I had to leave again and I couldn’t shake the shame.

I buried myself in my blanket on the sofa as soon as I got home and drifted off.

When I woke up, everything felt fresh. The disappointment and shame had gone and I was able to see the successes I’d had! I felt empowered by my progress and it motivated me to get back up again this morning and do the same drive, up the same road, to the same school and guess what… I lasted the WHOLE day!

I could dampen my spirits and remind myself that today was an easier day because there were no children, it was a shorter day and a more relaxed environment BUT that would be wrong of me. Although these things are true, by mentioning them to myself, I’m taking away the achievements I have made!

I’m now back at home, snuggled in my favourite dressing gown with my new, long hot water bottle (full review coming soon!) watching trashy TV and I couldn’t be prouder of me!

My lesson to myself, is to keep on keeping on. Don’t give up after the first hurdle. The only way to get back up and move on, is to look at what you can do and not what you can’t. It’s easier said than done, but NOTHING is impossible, unless you say it is.

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Mountains and molehills

After two weeks off, I am finally returning to work tomorrow. As a teacher, my job is incredibly full on. Luckily for me, tomorrow is the last day with the kids before the Easter holidays and Friday is a staff training day, involving all listening but minimal movement!

I know that tomorrow will be relatively easy in terms of teaching workload however I am feeling incredibly anxious.

I’ve been off for what feels like an age, while life at work has gone on without me. I am worried that people will look at me differently or worse- feel sorry for me! Everyone I work with has been fantastic- they’ve sent me messages, cards and flowers, as well as filling in for me and covering my class. I know I have everyone’s full support but I want my illness to be seen as a celebration of strength, not sorrow. Am I alone in this feeling? Or have any other invisible illness warriors felt this upon their return to work?

I am also worried (and any teachers out there will completely understand!) that a number of others have been teaching in my room, which means that things will have been moved and different systems set up. Although this is easily rectified, as someone with OCD tendencies, I am already twitching at the thought of trying to re-organise in my own strange way that probably makes no sense to any other human!

I feel I have lost touch with work. Usually, when I’m off sick, I’ve been able to catch up on admin type jobs at home, like planning and data but because I’ve been so unwell, I’ve not managed to muster up the energy to do anything work related.

I know that this time tomorrow, I will be fine and feeling silly (and probably exhausted!) at today’s worries. It’s the whole riding a bike metaphor- you know you can do it and you can’t forget how to do it but when you overthink it, it seems impossible!

It will also be my first time driving in over two weeks. I live 40 minutes away so may have to do a test run to the shops later under supervision- A cracking excuse to buy survival snacks for my first day back in action!

Updates to follow!

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