12 Comments

  1. Sorry you’ve got to that point! I sometimes feel like diagnosis and health care can only get you so far, then you either sit with all the diagnosis like all balls and chains attached to you or you start researching what to do. I know it can be hard knowing which sources to trust!

  2. Joe Doc

    Well done you for highlighting this problem. My daughter suffers from the same and also has fibrmialgia and finds it difficult to handle at times and has practically no life at all and spends most of her time in bed.
    I feel helpless as a father with not being able to do anything for her and i would go to any lengths to help her but it’s been inspirational to read about yourself and i truly wish you all the best for the future.

    • Thanks for your lovely comment, Joe. Really sorry to hear your daughter is suffering – the combination of conditions makes it even more challenging and it can become a vicious cycle. The most important thing is that she knows she’s not alone and there’s loads of support out there and many who will be able to relate – the nature of these conditions is they can be very isolating, but important to never feel alone! The IBS Network and Endometriosis UK are both great sources of support and information. Of course there’s a host of other organisations and people too. I’m afraid I’m not sure about fibromyalgia but have no doubt there would be similar support out there. Sounds like you’re a wonderful dad. Really hope things improve for your daughter xo

  3. This is just how I feel from time to time.. even if ‘just’ having some more or less unidentified food intolerances. For me it feels just like I have to change my diet over and over again, so finding balance and eating healthy isn’t always as easy as it seems or looks like on social media. Love your honest words!! Eve

    • Thanks Eve 🙂 yes, social media is fine but certainly doesn’t give the full picture – plus, what works for one person won’t necessarily work for another. Always learning/adapting. Other factors than food, too. Nothing is ever simple! xo

  4. Heather

    Yep, I can totally relate, and have days when I sometimes wonder what is the point of actually being alive. I would never do anything about that though…not even when I’m suffered get yet another IBS flare up, feeling painful, bloated, grumpy and once again having to cancel even the very few plans that I dare to make. The past two months have seen some of my worst days for a couple of years, and I think I’ve finally tracked it back to two things. One is that I have been eating rice thins, which being 91% rice I thought were ok on my low fodmap diet. I was eating these every day because they are tasty and snacky and I was so delighted to find something that I enjoyed. By accident I didn’t have any for two days and felt so much better…I’ve not had any for a week now and I’m no longer in excruciating daily pain. The other thing was that I just had too much on….too many shifts, even though I’m only working relief so it’s a couple of days a week, people coming to visit and weekend things planned. When I get too filled up socially I kind of panic at not having enough me time and the stress sets the IBS off. It’s so hard to deal with though. I don’t want to become a recluse, but I don’t like cancelling on others either. I hate letting people down, but recently I’ve been more open about my IBS. I talk about it with people who are not in my close circle, and I’m finding much more understanding that I expected. My yoga teacher is also amazing, and has even provided me with information on poses to help IBS, and I’m also doing some daily meditation. The sad fact is that IBS doesn’t ever get healed. I’ve had it for 32 years now, and spent so many of those years hiding it, embarrassed by my body. It is just a constant juggling act…..sometimes a thing will work, the next time it causes a flare up. It’s a cruel illness, and sometimes people think it’s all in my head…just because it can be affected by anxiety and stress. They say…don’t worry about things, then you will be fine. I wish it were that easy. I’m anxious because I have IBS. I don’t have IBS because I’m anxious. I don’t know what to suggest to help, but think you are doing the right thing going for a consultation…fingers crossed. I’ve been on the low fodmap diet for almost two years now, and it’s the only thing that has made a big difference. I’m also just starting in some pro biotics, so will see how that goes. Hope you manage to find the balance soon x

    • Hi Heather,
      Can I just say, and meant with complete sincerity, what a strong person I think you are. It really can become such a vicious cycle. I’m sorry to hear you’ve been having such a bad time recently – it’s great that you’ve been able to pinpoint those triggers! I think we all have our little routines of what we eat which wouldn’t even occur to us as causing symptoms. Wonder what’s in the rice thins that triggers…regardless it’s great your pain has reduced overall. I can totally relate to what you’re saying about not planning too much in. I purposely keep free time. You have to do what’s right for you. Friends/family will understand and, like you say, people are far more understanding than perhaps expected. The more you can be yourself, warts n’ all, the easier I think it is. ‘Don’t worry – you’ll be fine’ is possibly one of the worst pieces of advice someone can give – better to say nothing at all! Surrounding yourself with a supportive network helps. Really appreciate your message and hope things improve for you – would be interested to hear how you find probiotics. Feel free to message anytime xo

  5. This is the first time I’ve seen the cycle I’ve been stuck in written in words! It’s quite a relief to know that it’s not just me going through it. Thank you for posting! xxx

    • Hi Kim, thanks for your message. Glad you found the post helpful 🙂 You’re definitely not alone – although it’s easy to feel this way, particularly due to the invisible nature to the outside world. Luckily there’s great support out there. It never ceases to amaze me just how many suffer with IBS, endometriosis and/or other chronic conditions. Hopefully awareness will continue to grow. Take care and feel free to get in touch anytime xo

  6. Sarah

    I was just thinking of you the other day, after reaching my own limit, and wondered if the laparoscopy has helped you. I guess not really seeing this post. I’d finally reached the point where I was considering the procedure but not sure now. Hope you find some relief soon.

    • No – sadly not. Initially I saw some relief, but not any more it seems. End up questioning everything! The ‘journey’ continues, I guess. I can understand where you’re coming from on that one – it’s a tricky one as it’s the only way to properly see what’s going on. To be honest I feel like I’ve got lots more to learn about the condition. Shame that it’s so misunderstood (understatement). Thanks for your message – hope you’re feeling more like yourself xo

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