I'd made arrangements to go on a 250 mile train ride to help family members with a really difficult family problem. I knew it was a risk booking tickets and making commitments, but I gambled on it.
The stress has been awful the past 3 weeks to a month now. I kept "positive-talking" myself and saying I need to be resilient like I always was before. Then I went ahead, and should have been travelling Tuesday.
Prep for going stressed me, plus the endless onslaught of things that have to be dealt with, daily. But I was doing that remotely. I could feel it was a heavy load of stuff, but what got me also was prep for the journey and all the hard work I'd have to do when there.
I thought I might be able to do this and even spent money on some things to prepare, But my body rebelled and this morning had another horrible flare up. I had to cancel the trip. (this is beyond Imodium or meditation).
Now I feel so awful and I also feel so guilty. Another family member has to bear the weight that I have dropped, with me saying I can't carry it. I explained, but it sounds like an excuse. No one understands IBS. When they meet me I always look OK for my age, and they most often meet me without this awful stress so I seem normal.
Normally, when I am steady and fairly alone I can be fine for ages sometimes and always was a strong person. But in this situation when I am really needed I have proven myself to be weak, unreliable and selfish, putting my own feelings first.
But I literally couldn't take it, couldn't do it. It was vital I did, but I couldn't, and I have let people down
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Luisa22
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Don't beat yourself up Luisa. You are strong but also getting older and we can't do so much as we get older. You are still a strong person but age catches up with us all. You are certainly not weak, or unreliable or selfish and anyway why shouldn't you put your feeling first sometimes. If they think you have let them down, perhaps they should remember what you have done in the past and also remember your age and that you are not getting any younger! Also, they might NOT think you have let them down, they realise that we all have our limitations.
Maureen, thank you. I spoke to a friend on the phone tonight and she said the same thing as you so I need to be kinder to myself. I am 70 now and things aren't the same as when I was in my 50s. We do get more vulnerable with age, yes.
A family member got back to me tonight and said it was ok and not to worry, so maybe I was being too hard on myself. I know that person who is also vulnerable in a way, will have to take on extra work now though, and I think that made me feel like a slave to IBS!
How are you doing, Maureen? I hope things aren't too bad with you right now?
Luisa you must not feel guilty Just reading that you were even contemplating such a big journey made me feel anxious Goodness me you are not weak and you are not selfish
You were poorly it was too much for you to do with the condition you have
What if you had asthma and on the day had a bad attack and couldn't go would you be beating yourself up ? No of course you wouldn't
I think you hit the nail on the head that people don't understand and you also look so well Also you say you look "normal" you are "normal" you have an illness that prevented you from going that's all and you couldn't help it
Please stop feeling guilty you have nothing to feel guilty about its a horrible horrible condition that you can't help
I hope that you can put this behind you and look forward you didn't say no straight away you planned for it and had every intention of going so I really hope you get better and better
I really feel for you on this one, you sound very much like myself, always been the strong one that people have relied upon, always had organisational skills for people to rely upon, always been efficient and can cope with anything that life or people throw at me. Well, you know what Luisa, I'm just human and so are you and it's you that is the strong brave person to have even taken on such a task in the first place. Ok, it may have been a worth while task to help others, but why should you make yourself ill?? Who is going to be there for you??
I got sick of being relied upon and even now I'm almost 66, and I had to take a step back from my old life years ago for my own sanity, but still people wonder why. I'm getting older just the same as everyone else and no one ever understands about IBS and the issues I have.
Even my sister said the other day when I spoke of a recent long lasting flare up, why are you like this she said, we used to always go out for meals years ago and you used to eat anything and you weren't bad then...... it's just pointless trying to talk to anyone who refuses to even try and understand.
My husband and I have been discussing going away for just a couple of days and I want to very much, but I keep thinking about getting ill and having to deal with it while I'm away and spoiling the whole thing. I'm much better with familiarity these days but I so long to visit new places too. It's years since we went away anywhere.
If people think you are selfish Luisa, then think of yourself for a change because no one else will. Time is precious for us all, even more so as we get older and the years go so fast. Get yourself as well as you can now and forget about it, enjoy life 😘
omg Luisa I understand so well. I am 74 and two years ago moved to a retirement apartment in Devon with my wife who is a bit older. I have always been a strong character and arranged most things with family and friends but have been really struggling with IBS c and pee problems recently. I thought I had it under control but any time we have any plans something seems to happen and I can be doubled up in pain! Most people still tell me how good I look for my age but don’t understand what is going on inside. Most long journeys are out of my league nowadays. If I am driving I do feel in control to a certain degree but flights are really out of the question. We have been on a cruise which we both love - plenty of toilets and very nice cabins and you can go from English ports. I feel desperate at times letting friends and family down but with me the stress of it all triggers everything off! So please don’t feel guilty we sometimes have to put ourselves first. Please keep positive - all the best Ian x
I know exactly how you feel Louisa it is so distressing and disabilitating but please don't feel guilty it is awful to have to live with this condition. I have to cancel outings and appointments when I have a flare and sometimes go out and have to be brought home. It's a vicious circle as worrying and stress makes Ibs worse but that's human nature for us. Hope you feel better soon.x
Dont be so hard on yourself Luisa,you tried and fully intended to go .I am the same,feel like I can do things and so want to but IBS comes along and puts paid to all my plans.It really is a debilitating illness and I hope you feel better soon.Always find your posts informative ,more so than a doctor.Best wishes.X
A hard lesson to learn, is to realise and accept our own limitations. You have been strong in realising this and not going takes strength in itself. It's about knowing when you need to take care of yourself. There is the old adage about needing to put on your own oxygen mask first before you can help others. Self care is really important and even more so with those with IBS. The more everyone looks after themselves to the best of their abilities (and some, despite this, will need help from others and shouldn't feel guilty about that either), the less burden they become to others, so actually you are helping them by taking care of yourself.
try not to feel so guilty about this Luisa. You’re having another flare up which as you know often comes out of the blue. Stress doesn’t help as we know but sometimes life is stressful. You offered to help and prepped for it which was good of you but you yourself have health problems. Take care. Maybe perhaps you could help in other ways? By calling the person concerned & carer and giving them time that way? Ordering online food shopping for them etc or helping to organise a ‘ sitter service’ to give the Carer a break and peace of mind to know someone is there?
I had to cancel a concert whilst traveling to it recently and had to be taken home. It’s frustrating at times isn’t it. I’ve been asked recently to help out regularly with caring for elderly relative ( I’m squeezed middle) but I had to be honest about not being able to commit so much time. I help out when I can .
I hope you are ok Luisa, I am 71 and cope better with familiarity, I too had a similar time, I had bought a new outfit arranged transport to attend my granddaughters graduation but was getting more and more anxious as the day approached , I had to cancel was really feeling bad, it resulted in my daughter and granddaughter saying I had just made an excuse and had let them down , as I look alright , had a few very upsetting texts off them, all the time never once asking how I was, that was 6 weeks ago and they are still sending these texts inferring if I don’t apologise I won’t get to see my grandchildren and I have to make up my mind. Which is making me feel worse.
Oh my gosh...I am so sorry about that all happening to you. It can be very heartbreaking can't it? The one thing young healthy people don't and can't really understand is health problems they have no knowledge of or experience with.
It's awful. As was siad in the comments above (to me) if I'd had a huge asthma attack there would be no doubt at all about not going to this commitment I had organised for.
Well it's the same with you, If you had a bad heart or something, they would have understood. What is it about IBS that nobody seems willing to understand??
Yes, I bet they just think "oh poop problems, that's not so bad", but only someone who has that knows how rotten it makes us feel.
Your absolutely right Luisa, people who have no experience with IBS think it doesn't exist, even some doctors are of the same opinion. People think it's all in our heads and we are just looking for sympathy and we should all pull ourselves together. I've had it for 15 years and still suffering and no one except people on here understand or even believe there's anything wrong with me. My sister says, but you look so well! Are you sure your not just imagining it? 😡 Honestly, I wonder why I even tell her anything at all.
I've been walking and climbing mountains for donkeys years and I love it, but lately and I can't explain it, but every time my husband and I decide to do one we've never done before, the anxiety starts. Take today, we had planned to climb a new mountain and I was looking forward to it. We'd checked the map, had a good idea where we were going, nothing dangerous and the weather was glorious. Then, I was awake early as usual after not sleeping too well. I was on the toilet 3 times before we left the house. I took Imodium and we set off. I shouldn't have gone, but my husband was looking forward to it too and I didn't want to spoil it for him. We got to the start point and I knew Id have to go to the loo again, luckily there's a cafe there with toilets round the back and I knew this as we'd been there before to do other Fells. Then another Imodium, 4 in all and the most I've ever taken in one day. I felt terrible and had no energy. We did the walk and the more I got into it the better I felt, in spite of the heat getting to me. This has happened a few times over the last year and I'm terrified that one day we'll be somewhere where there's just no toilets, which 9 times out of 10, there isn't 🥴
Why have I gone like this?
I know it's the stress and anxiety but the walking normally sorts it out, but I'm getting to the stage where I'm worrying about doing new mountains and only feel ok when it's familiar walks and climbs that we've done often. My husband knows it's anxiety but I'm sure he thinks I should be able to control it and doesn't know why I'm worrying about a new walk. I try so hard, but it's hopeless. Once I've done the walk, I feel great and it's such an achievement and if I go back to do the same walk on another day, I'm fine and the anxiety isn't there. I don't know what to do about this. It's happening more often now and I don't want to give up the walking.
It can be very isolating this lot, not having anyone close by who understands.
Oh Miss Pomfrey....I just LOVE this mountain hiking thing you and your husband do. I spent happy years in remote areas in the Welsh mountains (albeit as a strong young thing with cast iron guts!) But I have a deep, deep need and love of the wilderness, and know how healing it can be. Forests are my thing too.
Gosh, I remember the "earth latrine" on the side of "my mountain" (well...it wasn't literally mine, I just pooped on it!! haha) So well organised and neat except when gale force winds blew loo paper all over the place and I had to run around and pick it all up. Sitting on that plank over that dugout latrine, while balancing loo paper, little dish of warm water, quickly going cold, to wash after going, and a huge golf umbrella to keep my dry when it rained! Fun (in those days age 27!)
But yes I understand about how our resilience and stress tolerance changes not only with age but the the IBS we have had to learn to live with. I haven't the same resilience now to stresses I could cope with even 10 years ago.
I can understand your hesitance to do a new mountain, especially with unpredictable IBS and the way it can make us feel out of the blue and often with little warning.
I know how you feel but you mustn't feel guilty, IBS can't be controlled by medication like other health conditions and like any other "invisible illness" it's hard to make people realise how much pain and discomfort you're actually in, never mind the worry of having access to a toilet on a train - you should be easier on yourself and stop worrying about what people think. I've had to cancel so many things because of IBS, and there are people in my family who even after 25 years still think that I'm "making a fuss" about a stomachache. Take some time to get through this flare up and I hope you feel better soon.
Good morning LuisaI know that feeling only so well. By coincidence I've just done this yesterday to my sister who was meant to be coming up to stay for five days. I was going to go away for an overnight stay as she kindly said she would look after my son who has Autism.
I have been discharged from Gastro and told all my coeliac has been sorted out and that I have slow transit gut and IBS and my constant right sided pain is due to adhesions from abdominal surgery! They prescribed Gabapentin for nerve pain but this was unsuitable for me and made constipation worse. I think you have to care of yourself first. The trouble with IBS is we still behave as if we are alright! I always wear make up and smile smile smile. Do take care of yourself first.
Hang on in there and explore all new research which is always cropping up. I'm just about to try making kefir. I'll let you know if it helps. Go well and take heart
Yes, Lallylubs, plans change with IBS sometimes in only hours. You can't help that. But it does help to have someone who understands, and many people, even though they might try to, can't of course. I am sure your sister won't be too upset. Maybe that will release her to do something else she might like, especially in such lovely weather?
Yes, keep wearing the make up and soldiering on. That's what I do too. So unfortunately we look pretty good but are screaming in our bellies! But I always try to make myself look nice and keep my house hygienic every day (even just in basic ways so bathroom and food prep areas are fine.) Those old routines can buck me up a bit anyway.
Thanks for all your kind support everyone. I can't help feeling a bit guilty as another family member now has to take all the strain, and he wasn't so well himself earlier in the year.
Honestly, if this was happening 20 miles down the road, I'd be there as often as possible, helping with admin and social workers, shifting stuff (I'm actually quite physically strong when I'm ok) , mucking in, cleaning, visting a family member in hospital, you know?
This isn't my mother or father but someone else in our family. My mother and father died quite some years ago.
Sorry to be slightly cryptic. I am always wary of putting too much personal info on the internet.
Not because of all you people here, but because of you-know-who (big brother!)
I have always been able to cope with this kind of stuff (practical hard work) and usually actually enjoy doing things like that and find it creative.
But body just keeps saying a big fat "no". And all your support has helped me a lot.
I know you people would get it. A friend of mine really gets it too, being ex-IBS herself.
"Ex!"...hear that?? It gives me hope. She only gets a slight return to it when she is super stressed, otherwise is fine now and can eat what she likes!! Wow.... 😍
Luisa, I am late replying to this but you wanted to go and you would love to have gone.If you weren't so worried , you would have gone...you're worried because you know there's a possibility of something going wrong and you're not near home.Its so sad, but I understand it completely because I have found myself in that situation....and it's awful.But It's not just you....its really ,really hard.Im sure you will be doing the best you can snd it's not always easy for others to understand( sadly), which makes it harder for you.
Oh I am sorry you have found yourself in that position before and suffered the consequences. It's so unpleasant. I think we can manage things moderately well when left alone quietly in our own space and own home territory. But even the natural stess itself of these travel undertakings start to get to my belly. I have almost NO stress tolerance any more.
Many people don't really understand. They think you have an upset tummy and are kind maybe about that. But they think you will "get better" in a few days, and will be fine for travel next week or quite soon. They don't get the unpredictable nature of IBS at all.
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