Irritable Bowel Syndrome (IBS)

#MyalgicEncephalomyelitis #chronicillnesswarrior #Fibromyalgia
Long post alert... not for sympathy but for information and education purposes. I've thought long and hard about posting this but in the end I decided that it's better for the world to see both sides of the story...
A weekend in the life of a chronic illness sufferer...

What you see... someone who is off for the weekend to party with loved ones and live their life to their fullest potential. Something I truly believe I deserve to do. I mean, I turn 50 in October not 90 and I want to enjoy as many experiences as I can, just like everyone else does. So you see someone who is smiling and having the best time making memories.

Then you might think... but isn't she meant to be ill? How can she say that and be out enjoying herself doing all this stuff?!

Well, for most of you all you need is to sleep it off and go again... you won't think twice about it on the lead up, on the day or the day after... it's just a day or weekend in your life...

What you don't see!
•24hrs under house arrest doing the bare minimum to get through the day while trying to conserve as much energy as possible.
•The anxiety on that same day as to how you think you're going to cope over the weekend and the thoughts of actually not going with your loved ones.
•Still that same 24hrs the anxiety over what to wear... sounds silly right? Wrong! It has to be comfortable to last all day in all weather, a lot of us spoonies have issues with clothes and comfort.
•That night you want the best sleep you possibly can, extra energy conservation... but restless legs kick in as you're trying to get to sleep and the intrusive thoughts about whether you should actually go or not.
•Travel day and issues with IBS decide to show up, you're almost too afraid to eat or drink the nausea builds (it's all anxiety driven) but you're also trying to be excited, this has been planned for months!
•You're off and you have conquered the anxiety and start to get excited 😊 this is going to be an epic weekend, yes, I will have a flare up and possibly a crash but hell you'll have made some awesome memories!
•Life throws a curve ball... accommodation had cancelled but you've not been informed... you're an hour away and have nowhere to stay. Panic sets in as does adrenaline... uh oh... this will slap you in the face at a later date too.
•You're off again everything sorted you've had to take whatever you can find last minute (thanks to my Mother in Law) However there are multiple steps 😳 but we need accommodation. The rest of you won't find this and issue.
•A rubbish sleep but the day is here, excitement and adrenaline will get me through the day... but I will also take with me... plenty of meds (just in case) the anxiety of how I look, the insecurity about myself and the anxiety of how I'll cope... I still get through an epic day, but those things accompany me, being careful of what I eat and drink incase I mess up my already dodgy IBS! I also need to sit as often as I can and make sure I keep hydrated and close to a toilet.
•Get to bed in agony and just pray for at least some sort of decent sleep...
•Next day and OMG ... I feel like I must've run a marathon on a hangover while having the flu! But we still have to pack up and get to the car and have breakfast somewhere. We're in East London we can't drive everywhere as there is nowhere to park. I remind myself we'll soon be in the car with a heated seat and air con (odd combo?! I know)
•And we're off home, some relief in knowing I'll soon be able to put my feet up to reduce the swelling of feet and ankles.
•A quick pitstop and I buy a squishmallow as a pillow for the car. Literally comfort is EVERYTHING right now. Eat something take some meds and just rest.
•Home sweet Home, happy but want to cry because I feel so bloody awful but still buzzing off the adrenaline of having been to a wonderful gig.
•This morning I wake up after a pretty good sleep(for me) but not even a little bit refreshed, thankful that my amazing partner is here and I can ask him to bring me a coffee and cereal bar back up to bed. I do a click and collect (more expensive but I can't even think about going shopping physically) and to be honest even doing it online was pretty overwhelming. Holding my phone hurts and I just wish I could get back to sleep for a few hours where there would be no anxiety and overthinking or overwhelm, but that won't happen so I decide that the best place for me is bed. When I can concentrate more I'll put the TV on but for now I will lay in front of the fan.

So, the main point here is this...
If you ever see posts by us Chronic illness warriors showing us having an amazing time and then think, aren't they meant to be ill, they say they can't work etc... Just stop that train of thought... what you see is most definitely NOT what you get. This will also take time to pass, I say time because it's not known how long, I could be feeling more myself by tomorrow (highly unlikely), or it could take days or weeks. It's not linear or easy.

Also, just to say, I may not be feeling ok but I have made so many wonderful memories and they should help me going forward while I recover.

Please be kind to whoever you meet, you never know how they're actually feeling.

If you read to the end, thank you 😊

Hi all. I have always had this fear to an extent, but lately it has been debilitating. Last fall I began to suffer from random bouts of waking in the middle of the night nauseous, and soon could barely eat because of it. Now, though I am trying a diet to help reset my body, I am scared all the time. I used to wake up in the middle of the night feeling sick, so now I feel like every night I can't go to sleep until I've passed the time that I normally would wake up, even though this hasn't happened in months, I lose sleep over it every night. I have IBS-C and reflux, so my stomach is often a bit off. I don't trust my body, so every slight movement of my stomach has me on high alert.

I also work in a preschool, so avoiding the germs is hard and every day is a battle. Any time I hear that a bug might be going around, or if I hear that someone got sick, I feel as though I don't want to leave my house or see anyone.

To top it off, my husband and I would like to have kids in the near future. I really do want to have kids, but I’m so terrified of nausea/being sick and the potential of it happen for pregnancy.

I'm so tired of living with this fear.

Hi, my name is kmbaker. I'm here because I am currently eating low FODMAP for nausea and IBS-C. I used to deal with disordered eating, body image issues, food and exercise and am struggling with that now that I am dealing with the diet and IBS. I am a very anxious person and have now added anxiety toward illness, vomitting, nausea, and food in general. I am feeling very confused and alone in this.

#MightyTogether #Anxiety #EatingDisorder #IrritableBowelSyndromeIBS

Hi, my name is momma868789. I have to live daily with many medical issues. I have fibromyalgia, CKD stage 3, Venous Reflux Insufficiency, micro valve prolapse, coratid artery disease, aorta aneurysm in my upper stomach and many allergies. I also have IBS. Many foods and medications trigger it constantly.

#MightyTogether