Living with this horrendous disease !

[Sam110]

Me again.

As you can tell it’s a bad day.

How do you cope with the following ??

1. A life on pause

2. A house that is a mess coz you’re too ill to do it

3. The guilt that your husband is doing everything at home

4. Not being able to be part of family outings etc

5. LOOKING PREGNANT when you aren’t?

6. What clothes to wear when you look pregnant ?

And it goes on .......

[Kirst625]

How are you feeling now? Your list is definitely something I can identify with after another weekend in bed. Not diagnosed but working towards the gynae seeing it as more than an IBS issue. It's horrid feeling so low and overwhelmed isn't it and although I can't advise properly with not having had an official diagnosis I just wanted to reply as not feeling so alone is some comfort I know X

[Ugne]

Hi Sam110,

I’ve been in your shoes- walking the dog used to feel an ‘achievement’ of the day. What helped me was realising that only I’m responsible for my own health. No one knows my body better, not even doctors, and by saying this I’m not putting blame on medical experts for not knowing enough.

Committing to making small changes in my lifestyle was the best decision I’ve made. For example, for the last year I’ve learned that just by doing daily, easy qi gong exercises, makes me stronger. Not just physically, but also mentally, which is so important with endo..Lately I even went to a yoga workshop and noticed how much more comfortable I feel in my body compared to a year ago.

So that’s my little ‘turtle’ lesson learned. Try something new even if you feel sceptic to begin. I used to feel silly when I started qi gong exercises, but I’m pleased I persevered.

Hope you can find what helps you too x

Take care,

Ugne

[Sam110]

Thanks so much for replying. It’s so helpful read this. I’m deffo going to look up qi gong exercises as I’ve never heard of them. I deffo need to feel stronger. I’m determined to fight this but god it’s so exhausting xxxx

[Sylv_99]

I’m feeling exactly the same as you this weekend! Sending gentle hugs and tons of understanding. I identify with everything you mentioned! I used to love fashion but now I’m just desperate to find clothes that are comfy and hide my stomach xxx

[Sam110 in reply to Sylv_99]

Thanks love. I’ve borrowed my sisters maternity leggings 😱😱. But I feel great in them.

[Heloo85]

Leggings are a god send. Anything with an elastic waist will help loads. I have a couple of pairs of endo pants. As another poster also mentioned, just plain old force. I know its hard but the more you do, the more youll be able to do! It takes a long time to build fitness when your body is under duress and its quickly lost again! So something easy done daily. A small walk. The agony i was in when i went back to work part time was no joke. I can now do my shifts without crawling home. Its taken months to get this far. I still have very active and very severe disease but honestly, getting back out into the world has been a god send! Sometimes im busy enough to forget im ill! Xx

[Sam110 in reply to Heloo85]

This is great advice. I’m determined not to let it beat me. Even if I’m just walking a little every day.

[Kerry_M]

That list was my list last week. Thought it would never end. However, this week is a better week (so far). Still have pain, but slight in comparison!! At its worst, it feels impossible to do ANYTHING. Had to ask friends to help with the school run last week, couldn’t stand up to cook, couldn’t walk dog so had to spend more money on our dog walker to do extra, had to take days off work as no way I could manage train journey let alone a day in the office. I have every sympathy. Have you been offered anything that might help - the Mirena, the pill, diet changes, a lap?

[Clover123]

I also feel your pain. When I last went on a night out I had a girl come up and ask how far gone I was? The embarrassment of having to explain that I wasn’t pregnant. I’ve avoided going out properly since which is hard to explain to friends sometimes. I constantly feel like covering up - I find floaty shirts tend to make me feel abit more smarter if I want to dress up or cami tops. I pretty much wear joggers the rest of the time! Even at work sometimes I have to unzip my skirt if I bloat. As someone else mentioned I’ve tried yoga recently and find it really helps relaxing your mind as well as your body.

[Sam110]

Hi. Thanks for replying. I think yoga is deffo something to try. Must be better than sitting staring at my belly all day 😂😂. I’ve been asked if I’m pregnant too. It’s awful. Long cami tops and a blazer for work with maternity jeggings. I wonder whether I have water retention too ...