The need to be needed

Happy Thursday ballooners 💛 Usually I’d be buzzing for Friday and the weekend but this week is a little different and a lot harder.

Some of you will know that I am a primary school teacher and since Christmas, I have been part time and topping up my week with supply teaching to make ends meet. Everything was going well and I was definitely noticing a difference in some symptoms with less stress. However this last week has thrown many new and almost more stressful obstacles in my way.

The current pandemic has ripped through the lives of many. Some of my nearest and dearest have had to face heartbreak because of this and its hard not being able to comfort those people in person.

I’ve also battled with the new guidance on social distancing for different reasons. One being that I already feel like I do this and another reason being that, although I have an illness known to compromise the immune systems of some, I myself have built up a relatively good immune system because of the job I do. I technically fall into the ‘vulnerable group’ category yet I don’t feel vulnerable.

Now as schools are closing, my bookings have been cancelled and I find myslef without a wage. Its scary and uncertain. But that’s not the thing bothering me the most.

I have an ache inside me. I need to be needed.

My colleagues in full time positions are pulling together and providing amazing solutions for their classes. I have nothing to offer. I am not needed and what’s more, I can’t offer my help for free when I need to earn to survive this. But who, in this situation, would dare ask to be paid when everyone is providing kind, caring and free help for each other?

The need to be needed is something I’ve always known I have but it’s in times like these, when I see the generosity and fight within others, that I feel it the most. Again, I find myself without a purpose and I’m worried that being inside, without work and without pay for the foreseeable future, will enhance this feeling more.

I have a wonderful partner and a lovely, cuddly puppy to keep me busy but knowing I can’t really reach out or comfort my best friend or even see my wonderful parents on Mothers’ day or my dad’s birthday (they both are at risk due to health issues) is dragging me further down into the pit of sadness and self pity.

Does anyone else in the chronic community feel like this? Are others concerned about money in this situation? Any advice or pep talks would be greatly appreciated at this point!

Until the next post, keep safe friends.

💛

Fatigue and your flaky friend

Happy weekend everyone! What a week it’s been! I’ve worked 4 pretty full on days this week and I’ve been feeling pretty tired! Not only that, with all the uncertainty of coronavirus, I’ve had to be a ‘yes’ person and get up and go while we still are allowed outside!

Last night, I fell asleep at 7.30! I told myself that it was the week catching up with me (and the meds that knock me for 6!) and let myslef rest. This morning, I woke up and tried to drag myself to the gym but my legs wouldn’t move willingly. I ached deep inside and my back started to throb.

I decided that staying in bed was a good option because I need to save some spoons for the plans I’ve made this evening. Since then, I’ve had 2 more naps but they’re just not helping. I’ve got SO much life admin I need to do today, most of which I can do while sitting on the sofa, yet I can’t seem to gather my thoughts to make my brain function.

This is the start of a fatigue flare up for me. The same pattern repeats itself every few weeks. I know I’ll be able to pull through for this evening, especially once I have had a glass of something nice but I know the rest of this week at least will be full of long naps, jumbled up thoughts, forgotten appointments and cancelled plans.

This is possibly my worst symptom. Most of the time, I can handle the pain. I can fight past the leg numbing and back aches but fatigue absolutely floors me.

A lot of people struggle to understand fatigue. Its often confused with being tired but it’s so much more than that. No amount of sleep will ease it. No amount of coffee will perk you up. It’s a whole body and mind tired. You can’t think straight, you can’t remember things you were going to say, sometimes your words don’t even come out. It’s like wading through treacle in a thick fog.

So please, when your flaky friend has to cancel plans or change them because of fatigue, please remember it is so different from being tired.

💛

I can and I will… Sometimes

Happy Sunday, friends! What a great start we’ve had to #endometriosisawarenessmonth! I’ve been overwhelmed by the support and kind words I’ve had since posting my story- thank you 😊 I’ve also learnt that I’ve managed to help at least one young woman with her struggles and helped her to see a light at the end of a long diagnosis tunnel! That’s what this is all about!

Just lately, I’ve been trying to find new ways to help manage my symptoms, both mentally and physically. The past few weeks, I’ve spent trying new gym classes and increasing my exercise. I was always keen on the gym and fitness because of the way it made me look and feel. Even Endo belly doesn’t look so bad when you’ve got a hint of ab!

As any Endo warrior will tell you, there are good days and bad days. Sometimes, they’re more like good days and bad weeks! But a huge part of my Endo journey has been learning to ride the ups and downs and listen to my body.

My regular readers will remember that last year, this was something I was battling with and I ended up pushing myself too far, resulting to a trip to A&E with a retinal haemorrhage!

Since then, I’ve learnt some huge lessons. Hopefully they can help some of our chronic community with their daily mental battles:

  • Nothing is worth stressing about to the point of physical pain- as I’ve shared before, my biggest trigger is stress. It brings on so many nasty Endo pains and for what? Stressing and worrying doesn’t change the thing you’re worrying about! Try to manage your stress by taking time to breathe. My go to stress relievers are baths, a good Netflix series or, if I’m feeling up to it, exercise. Yoga is my new fave 👌🏻
  • Say ‘yes’ to saying ‘no’! – there are more times in my week where I feel like saying no to something I feel I should be doing. This is okay for anyone, especially those who have fewer spoons to share around! I’ve learnt that saying no makes me feel as good as saying yes on a good day. I’ve surrounded myself with people who know me and my struggles. They understand that sometimes our plans are changed or even cancelled and they love me just as much ❤️
  • Remember that you CAN and you WILL… when you’re ready to!- Life is a marathon, not a sprint! Try to enjoy the good bits of the journey when you can. There’s nothing you can’t do, it just might take a little longer than you’d first planned.

Thanks for reading another one of my rambles! I hope they’re helping someone somewhere. Please continue to share and support the battle of raising awareness of Endometriosis. Every little helps, even just you reading this post.

💛🎗️

EndoMEtriosis: My story

WARNING- LONG POST ALERT!

To mark the beginning of Endometriosis awareness month, I wanted to share my story of this life changing and invisible disease, which rips through the lives of 1 in 10 women on this earth. One of the hardest parts of having Endometriosis is accepting that your symptoms cannot be seen by anyone. They can only be felt. In fact, most people (including GPs) still don’t even know what Endometriosis is. This is why I’m campaigning for a change. We need to raise awareness of this nasty illness so that our sisters, cousins, nieces, daughters and future granddaughters won’t have to suffer in silence like so many women, including myself, have had to.

Let’s start at the very beginning…

I started my journey with Endometriosis when I was 11. My first periods began and from day one I knew something wasn’t right. They were always incredibly heavy, agonizing and irregular. Sometimes I would bleed for months non stop. The pain was intense and I went through a stage of having to have the first day of each new period off from school. Constant embarrassing moments came from leaks and floods. I even became anemic and ended up having nearly 2 weeks off of school. But this, I was always told, was normal.

By the age of 13, nothing much had changed. I went back to the Doctors and they agreed that the only thing for it would be to start me on the pill. To this day, (14 years later) I am still taking the pill to ‘ease my symptoms’. Throughout my teenage years, I swapped and changed to different combination pills. Some helped for a while, others gave me horrific side effects.

The puzzle

When I reached 15, a huge piece of my Endometriosis puzzle was put into place. I was taken to hospital one evening after school with suspected Appendicitis. I was operated on immediately and had it removed. It was fairly straight forward and although scary at the time, I knew I would be better soon after. A week later, I was back at school. But after a few more weeks, I realised I was still in pain- the excruciating pain I had been in the night I was taken to hospital. I told my Mum and she took me back to the doctors. They said these exact words which sadly enough, have been echoed throughout my whole Endo journey- “It’s all in your head.”

Months passed and the pain continued to get worse. I began to find foods which angered the beast in my tummy. I kept a log. I went back to the doctors. This time, they decided I may have been suffering some adhesions from the surgery. They told me I should just put up with it and eventually they would loosen.

After several more visits to to doctors, finally they agreed that there may be something more. IBS was diagnosed and I was prescribed some medication, which worked to some extent.

Pass the parcel (and other games)…

Fast forward a few more months (give or take- it’s all a bit of a blur now) and I’d been referred to the Gastro team at the hospital. Finally, I was being taken seriously! I was tested for Crohns, Colitits, Coeliacs , Polycystic ovaries and many more. All had come back negative. The Gastro team advised that I followed the FODMAP diet and discharged me. Nothing more could be done at this point because I needed to learn to deal with the pain. It was normal. It was in my head.

Years passed and I was still slotting together the pieces of the puzzle. My periods hadn’t improved and my bowel symptoms were getting worse. I knew there was a link between them. I returned to the Doctors and had to beg them to do something more. They agreed there may be a link between the two problems and referred me for an Ultrasound at the hospital. Looking back, this is another large piece of the puzzle which was slotted in far too late. It also went unacknowledged for a long time. They found something. A large ‘thickening’ where my Appendix should have been. At first, they thought it was my Appendix, and didn’t believe me when I said I’d had it removed. I know Endometriosis is not seen on any scan other than an MRI, but looking back now, surely this must have given something away? But no, nothing serious enough to report. Back to square one I went.

Another chapter…

2010 arrived and my next chapter started. Off to University I went, where I discovered that my tummy problems were in good company of bladder problems too. I lost count of how many infections I had. There was a period of time when I was on antibiotics for around 3 months on and off. Nothing seemed to be helping and I was referred back to another hospital department for a bladder scan. Nothing- are you surprised?

A step in the right direction…

The next summer, I was finally listened to by a new doc. He decided to refer me back to Gastro for further investigations. I was 20 by this time. I underwent 2 colonoscopies, only to be greeted with the news that there was nothing wrong with me.The day after my 2nd colonoscopy, I went to work. My part time job while I was at uni was a babysitter. The lady whose children I looked after was like my Uni big sister. She looked after me so well and she knew straight away that something was wrong. I nearly cried as I told her all that had happened, since I Was 15 until that moment. She told me something I’d never heard anyone say to me- “I know how you feel”. I couldn’t believe that someone finally was validating everything! She said a big word to me. I rolled it over my tongue a few times and tried to remember it for when I got home to see my Mum. Endometriosis. That night, Mum and I were watching a medical programme. A young woman just like myself appeared on screen with symptoms just like mine. And there it was again. The word- Endometriosis. I felt the tears on my face as I knew this was my answer. So many of my friends had also seen the programme and had text me to tell me. I knew without a shadow of a doubt that this was what I had been suffering this whole time.

One step forward…

After a heart to heart with the Doctor, I begged to see a separate Gynecologist. My wish was granted and relief washed over me as she told me she had an answer for me. She never doubted for a minute that I had this condition so the week after my 21st birthday, she performed a Laparoscopy and finally gave me the diagnosis I’d been crying out for for years. Endometriosis. My left ovary. Completely scarred and misshaped. Ablated away. Words can’t describe the relief I felt. It had a name. There was a reason. It wasn’t in my head!

I clutched at this diagnosis. Every twinge, every ache, every tug inside me could be blamed on this and I was happy.

… a thousand steps backwards…

However almost a year later, things struck again. While teaching a class as a student teacher, I felt something began dripping down my legs and an awful pain in my tummy crept in. I quickly ushered the children to playtime and went to the toilet. There was blood everywhere and it wasn’t stopping. An emergency trip to the Docs later had me questioning whether my Endo had returned. Referrals were made and a year later, back to the Gynae I went. Another Laparoscopy confirmed the return of Endo, only this time I wasn’t left feeling the same relief after. The Gynae who had been so understanding before had turned on me. She told me it wasn’t possible to operate on my Endo anymore because I was still so young and had now had 3 ops. She told me to learn to deal with it and (here’s the best bit…) if I wanted to get better I should just have a baby. Sadly, this is a common myth of Endo. Having a baby (without acknowledging the fact that Endo leaves 50% of women with fertility problems) does not cure Endo! There is no cure!!!!

A light in the tunnel…

4 Years passed and I had moved to a different hospital trust. A new Gynae with a fabulous attitude. Another operation. A really thorough operation (over 2 hours!) revealed that my Endo had spread a crazy amount. Most of the left side of my bowel and inside my special place (Even I can’t use the proper word 😂). Stuck. Raw. Scarred. The images he showed me are forever ingrained in my memory. He didn’t ablate. He excised. He took time. He cared. He still cares. My op was a year ago and he still hasn’t discharged me from his clinic. He referred me to Urology for relief for my bladder symptoms which were finally diagnosed by cystoscopy during the op as Interstitial Cystitis. He has told me he won’t stop. I believe him.

Here I sit now, after 17 years of periods, 12 years of Endo symptoms and a 7 year battle for the diagnosis I already knew I had. I have more symptoms than ever and I’m in pain most days. I can’t work full time right now. I can’t eat my favourite foods without suffering the next day. I can’t dance the way I used to. Some days, I can’t get out of bed because my fatigue is so bad. Other days I can’t sleep because of my nerve damage from the ops.

This is my normal but it is not normal. We need to stop young girls, like myself all those years ago, going through all of this alone in silence, being told that this is all in their head. Enough is enough. Let’s stand together to fight like a girl, end this silence and end the stigma.

💛

A wolf in sheep’s clothing

I’m back! I’ve been feeling so overwhelmed over the past few months with work, family life, big decisions and of course the biggest bug in my life- my illness. I’ve waited and waited for something to come to me, so that I can write a not-so-rambly post. I kept waiting but all of my thoughts kept buzzing around me without making any sense. The dots just didn’t join up! But something has finally clicked! All of a sudden, I feel like I actually know how I feel!

The best way to summarise how I’m feeling is exactly this- A wolf in sheep’s clothing. And now that I think about it more, I realise I’ve actually felt like this for a lot longer than just a few months.

As someone who has experienced first hand how long it can take for a Dr to take your symptoms seriously, I can safely say that having Endometriosis is a sure start way to make anyone question their own bodies, pain thresholds and even their mental health. For the nearly 7 years leading up to my diagnosis, I was always pushed from pillar to post- from Dr to Dr, each time having to re- explain myself and my symptoms and accept the unsympathetic response that came back each time. Even now, after 3 surgeries where Endo has been found and seen to have progressed, I still feel like I have to prove myself when I speak to a Dr or even a consultant. This is really sad and what’s even sadder is that I know I’m not the only one.

Even now, I feel like my pain isn’t valid. Sometimes, I even question whether it is real. I am surrounded by women just like me through support networks and social media groups and I hear every word they say and their pain resonates deep inside me. But I still feel like a fraud.

Since deciding to work part-time, this feeling has become even stronger. My sense of purpose is non existent at the moment. I can barely get out of bed on the days I am not at work. I spend my time hiding from everything and everyone. I know deep down how much I am struggling with the pain, the fatigue and the lack of ability to carry out normal, every day tasks like loading the washing machine and walking my dog. But at the end of the day, I find myself throwing criticisms at the person looking in the mirror and calling her ‘lazy’. What’s more, I even imagine my friends and family saying this about me too. Instead, I picture them all with my symptoms, carrying on, not putting up a fuss and dealing with it and I am jealous of their ability to handle my illness better than me!

Today, I had my fourth weekly bladder installation. The first two had been fairly smooth. Last week, I noticed a lot of pain afterwards which continued throughout the rest of the week. When I attended my appointment today, my nurse asked me how the week had been. I plucked up the courage to tell her. She was angry that I hadn’t called her in the week, so that she could have helped me. I knew every day that went by this week, that this was what I should have done and yet I decided every day not to! Today I’ve realised the reason why- I am still scared that my pain isn’t valid. I’ve gone through a traumatic operation, where this secondary condition (IC) has been diagnosed and I’ve then gone through 4 invasive and painful weekly treatments, which have rendered me bed bound and yet I feel like I don’t deserve them. Why does my brain work like this? I’ve spent most of my life trying to justify my pain to medical professionals, and now that they’re finally listening, I really shouldn’t be having to justify them to myself!

I wish I could take the advice I spend my mornings posting on Instagram! But even then, I feel like I’m faking it. I wish I could take the time I need to get over this treatment without feeling guilty. I wish I could show other people who are close to me what I really feel like every day, so that they could tell me that the pain I’m feeling isn’t normal, even though I know in my rational brain that it isn’t.

I really am beginning to wonder whether I will every truly accept what has happened to me. I also wonder whether anyone else will, or whether they’ll keep expecting me to unzip the woolly costume I’ve been wearing and expose myself as the real big bad wolf that’s been hiding underneath.

💛

Pointe shoes and pelvic pain

The stage is set. The audience hush to give their full attention. The anticipation and expectation is set high. One last check to make sure you’re ready for action. The adrenaline pulses through your body and the nerves fizzle away. One last deep breath with eyes closed. Two shallow bounces and a drag run to your place. Everything is ready.

Your eyes open, expecting to be met by an orange hue of light but there’s nothing. You dare to look around, fearing a technical glitch and that the lights will rise, revealing your break in position. Your heart pounds but there is nothing. You look around to the people you usually share the stage with but it’s empty. A glance towards the wings reveals that you’re alone. But where has everyone gone?

The adrenaline turns to fear and loneliness. The darkness plays tricks with your eyes and your vision begins to fog. Your poise turns to a hunched ball on the floor and the tears turn to waterfalls. You’re about to give up.

Suddenly, a muffled voice cuts through the silence and catches your attention. You walk forward, blurry eyed and bewildered. One person has become your audience and they are cheering you on.

Yes, the lights are down and the stage is lonely but there is someone who sees you- a reason to keep going. You dry your eyes, brush down your leotard and take your position. It wasn’t the way you’d rehearsed it but you knew you could still make it work.

It’s so important that when things get really dark, you keep dancing because there is always someone cheering you on, even in your darkest hour. Remember, you can make your own music and dance to your own beat.

💛

Sunday sads

A short one today as I know if anyone is like me, they’ll be starting to panic prep for the week ahead!

Sunday is always a bitter sweet battle for me. I want to embrace the sleepy Sunday notion and not feel bad about it but my anxiety has different ideas!

I wake up feeling almost itchy with the urge to get straight out of bed and onto the list of jobs I’ve built up over the week.

I battle with the relax: do useful crap ratio for most of the day. I am short tempered and more often then not, I am in pain. I sit and analyse my feelings, almost in exactly the same way each week and I reach the same conclusion- I’m stressed!

I feel relieved that it’s just stress and attempt to remedy this with some sort of bribe of self care when I’ve managed to tick off the last thing on my ever growing ‘to do’ list. I keep a close eye on the time and see the hours ticking past so quickly! ‘I must hurry, I won’t have time to relax!’

I sit down after my last item has been crossed off and then it hits me- I’m far too tired to relax!

I then repeat the process of feeling stressed and disappointed that I didn’t get to do my ‘self care’ reward and I begin to beat myself up.

Monday feels even more daunting now as I know I’m going to wake up feeling less than rested and refreshed yet again.

Why do I do this?! Each week I am baffled at the same notion! Anyone else with me on this one?!

Today is different. I have spent the day crossing off my list BUT I am making myself follow through with my reward- a dog walk with a stop off at the pub!

Make sure you reward yourself and don’t get caught up in the Sunday Sads!

💛

Just add water

Having been off for 6 weeks, there are certain things that people expect from you; to feel refreshed, to feel revived, to feel energised, to feel excited…

As a person with 2 invisible illnesses, I suffer with crippling fatigue and I can safely say, upon my return to work today, I felt none of these things!

When I pictured my six weeks off at the end of last term, I saw myself relaxing in the sun, gardening, visiting ‘National Trust’ parks with my new puppy, being pro active and planning lessons- almost for fun, organising the dreaded cupboard under the stairs and being a domesticated goddess/ successful dog Mum!

The hopes were set high but the reality was far from it. Here’s what I really did with my 6 weeks of fun- I laid on my sofa with my hot water bottle strapped to me and I stressed over being stressed.

I didn’t even have the energy to water my plants and the worst thing about this is that I had noticed about half way through the time off that they were looking a little parched and I knew it was a small job that needed doing pretty urgently. That was 3 weeks ago. Today, they’re still gasping and beginning to shrivel.

While I know this is not good (and since starting this post, I have started reviving said plants!) I began thinking that it would be so much easier if plants could just water themselves! After all, they need water to survive! If my pup was left to her own devices, she’d seek out food and water where she could, so why can’t plants? Surely something so important can’t be dependable on something or someone else?

And then it occurred to me that we need to learn to water ourselves. Like many of the chronic community, I’ve spent years explaining my condition and expecting people to understand completely and support me when I need it and although there have been times where I’ve been heard, only my nearest and dearest- those who really look at me- are able to see when my leaves are beginning to shrivel and brown.

We cant always rely on others to water us, we have to learn to do this ourselves or we won’t make it because everyone knows flowers don’t bloom without water and we have the right to blossom like everyone else.

So here’s my message to you- what kind of watering do you need? A hot bath once a week? A night off from taking work home? A cup of tea when maybe you should be doing the housework? Water yourself, as much as YOU need.

I’m off to fill up my watering can!

💛

Good Grief

It’s been a very long time since my last post- I haven’t really been in the right frame of mind and I’m loathed to post for the sake of posting so wanted to wait until the words came to me! After a bit of searching, here they are.

In the last few weeks, so much has happened- good, bad and ugly but the common denominator in everything that has happened, is grief.

Grief is a funny old thing- it comes and goes and treats everyone differently, which is potentially the most frustrating thing about it, because that notion makes you feel even more alone than the reason you are grieving in the first place.

Just under a month ago, I lost my best friend. My Welsh Springer Spaniel, Meggie, was my bestie since I was 10. I knew this was coming for a long time as she was slowly deteriorating but the event wasn’t any easier through knowing this. Without going through the details (it’s still a bit too sore to recall right now) we had about a week with her, before we had set the date to say goodbye.

Losing a pet is different to everyone- to some, it’s just losing a pet but to others (myself included) it is as heartbreaking as losing a family member, if not, more so. To make matters even worse, the timing of Meggie’s passing was less than ideal. Myself and my partner had made plans to bring home a Welshie puppy of our very own. I’d been struggling to feel like I had a purpose and needed something to rely on me, to need me and to love me unconditionally, despite my limitations. We were due to bring her home the day after the vet told us it was nearing Meggie’s time.

At this point, I had no idea what to do- the guilt of getting a new puppy as Meggie was going was huge. I didn’t want her to feel like she was being replaced. But at the same time, I knew that I wanted Meggie to meet her, to know that I would be looked after. I also knew that I’d not want to get the pup after Meggie had gone so we decided to go through with it and I’m so glad we did.

Willow got to meet our Meggie 4 days before the goodbye and she has been a huge help to the grieving process. She has kept me busy and stopped me from falling too deep into the pit of grief. But at the same time, she’s hindered me because I’ve almost been too busy to allow myself to deal with everything. I don’t know which is worse!

The whole situation has been bothering me for the last few days and it really got me thinking about grief in general.

I’ve been off work for nearly 6 weeks as I am a teacher and it’s nearing the end of the holidays. It is at this point each year that I start to dread going back to work- almost grieving the freedom I have had. This year, this has been happening since I broke up. from day one of the holidays, I have been worrying about going back to work and wondering how I am possibly supposed to do another year. It’s a daunting feeling for every teacher, sitting on top of a new year, wondering what it will hit you with. But for me, this year is even more scary.

Last year was the toughest year of my life. I’ve had challenging years in my career but last year was an all round crap-fest. My health plummeted and my mood and sense of belonging and purpose went with it. I kept relying on my op to feel better. I constantly told myself and others, ‘It’s okay, I’ll feel normal after the op’, ‘once I recover, everything will be easier’ and then gradually ‘after the summer I’ll be myself again!’ But up until a few days ago, I was ashamed to admit that none of the above have been true. I was in denial- a huge part of grief.

I have been grieving the life I once had and the person I once was- not daring to believe that she was really gone. However, the last few days of thinking have lead me to my feelings and forced me to confront them. I’m not the same me I was and that is not my fault. Grief changes people but it’s how you come out the other side and embrace the new person you are that makes you.

The temptation is to sit and wallow in the sadness and miss the person you were before the trauma, before the pain and before the realisation but that will keep you in the pit for longer.

No- I can’t do the same things I used to be able to do. I can’t make plans for every weekend anymore, I can’t just go anywhere for food anymore, I can’t even stay awake past 9pm anymore! I will even go as far as saying I don’t think I can do my job for very much longer. For people with chronic illnesses, these changes are little tiny deaths and they can make you feel like a failure, if you let them. But strength comes in recognizing them and dealing with them. I have dug the grave for these things and buried them. I can visit them sometimes and find strength in remembering what it was like to do these things. I can also push it and relive these things from time to time- I can push it to eat a food I know will cause me a day of agony but it can’t be part of my life every day.

Here comes the good part- the person you become is a beautiful one- just as beautiful as the person you were before the loss. The person who has good memories but knows how to deal with them and accept them; the person who knows their boundaries and doesn’t cross them and thus doesn’t spend the hours that the old person did, feeling broken and in pain; the person who knows the reason for this and can see a way forward; the person who lives their best life and really knows what that means because they know that life is too short to grieve for the old person everyday.

To most, this won’t make much sense and some may even disagree- again, that’s grief! But this analogy has helped me to try and embrace the person the pain has made and to know my strengths, rather than my weaknesses. The next few months will be challenging for me but through accepting the grief, I finally have an idea of what I want to do so that I can be the best version of me!

💛

Free from fun

It’s been two weeks of the IC elimination diet and I am about ready to cave. In fact, I have caved a few times. I’ve had 3 cups of tea during the time and a few tipples of wine with some friends last week. I felt like I’d failed and let myself down for a while but then I realised it’s not a weight loss diet where eating things you’ve decided are bad for you means you should feel guilty. It’s completely different. Although I don’t feel like it, this is kind of my choice. It’s only up to me and it’s my journey. Giving up everything in one go was hard and unrealistic (even if the website recommends it!) I bet the people who have written the advice have never had to do the elimination diet themselves and I even suspect they typed their advice while munching on some gluten filled, chocolatey goodness!

Being a vegetarian, I have really struggled to find meals I can eat as even the Quorn products I rely on daily mostly contain Wheat and apparently ‘Tofu’ is a no go for IC sufferers. ‘Try a stir fry’ they said. Have you tried finding a sauce that is free from vinegar?! This week, I made the most disgraceful excuse for a stir fry, using Jack fruit, plain veg and rice noodles. It was disgustingly bland and even my partner wouldn’t eat it all (and he eats everything!) ‘What about a nice salad?’ Yeaahhh, salad without tomato is just not okay.

I decided to look for inspiration of some veggie IC diet blogs and I kid you not, they were utter rubbish! One even wrote in her bio about how she used to love adding different flavours and spices to her recipes but now has learnt to appreciate the blandness of plain food…. I mean, seriously, is this supposed to make me want to eat like this?

On top of all the limitations, the few gluten free, vinegar free, etc free foods I can eat do not fill me up at all and consequently I have found myself rumbling since day one. I feel like a stray cat, getting only the scraps and not knowing when I will be full again!

I keep looking to find the benefits in all of this. I’ve been keeping my food diary and trying to spot trends. I even thought I’d figured out the triggers when I didn’t have a belly ache for a few days but then as soon as I thought about it more, the pain crept up and I had done nothing differently. Through having my cave in moments, I have learnt that thankfully, chocolate and wine are not my trigger foods (PHEW!) I strongly suspect that gluten does have something to do with it because I’ve always had to have gluten breaks but to say that it is to blame for everything seems a little steep.

I guess I need to give it some more time. More reports to follow!

💛