Normal on the outside????

This post is inspired by the lovely comments I had to yeaterdays' blog.

One of the many frustrating things about endo is that most ladies with endo appear fine to those who don't look too closely. I've learnt that some people are really bad at reading body language. I'd guess roughly 50% of people would twig that something was wrong if they were talking to me. Clues such as clenched jaw, tense posture, unnatural stiff walking and controlled breathing are more obvious to some than others, even those who work in the medical profession.

People are genuinely shocked when I explain that I am in pain almost everyday. If I ever won the lottery (I wish!) I would fund a public information advert about the myths of endometriosis, and how to spot someone in pain. Until then I will take a deep breath each time I'm confronted with a myth and politely give the them the truth.

Couldn't risk taking codeine today as constipation has caused a tear; 50mg ami, cerezette, loratadine

14 Replies

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  • I know exactly what you mean....

    Another day for us tomorrow, to put our "nice" face on, our make-up and "look fine" at work....... xx

  • Once again I know what you mean!

    Ive just been to the cinema with one of my closest friends. I was late meeting her-am always late! Although tonight it was due to pain which i told her! She asked if i was ok and i just said yes!

    The fact i had two heat bags on me the whole way there, had a tens machine on through the cinema - i made a joke out of it to make her comfortable and felt like i was putting on a show as if to proo e i was in pain i was using props.

    When it came to walking up stairs it felt like she we t so fast, even though it was normal pace. I wanted to say I can't go that fast because of pain, but the words would 't come out.

    Just desperate for people to understand withou me justifying or waffling on about myself all the time.

    I'm so proud of myself for going. I had a massive wave of pain just before i left the house. It took my breath away and i felt panic creep over me that the worse pain was coming back. I didn't let the pain win. I downed some meds, whacked up my tens, covered myself in heat pads and fidgeted non stop trying to get comfy as hurting to sit through film- but i did it!

    Determined not to lt pain rule my life! I am learning to comprimise and the last two months have shown me my limits, but I won't let it win.

    My next mission im setting myself is to get the guts to tell people how i'm feeling as maybe i'm being unfair expecting them to guess whilst i put on a "show". Sometimes i think the show is more for myself as i dont want to admit the truth!

    I think i will say something like im having a really bad day, but there are people worse than me so ill be fine or im having a great day, i love this feeling. Its direct, makes it ok for them they dont have to feel sorry for you or annoyed you are going on about pain again but you have let them know...what do you think!

    I think i think too much!

    Keep them coming EndoEm...you have become my counciller :)

  • EndoEm, you should seek this as a profession??. You could counsel those that are living with Endo.. Have often thought about this step myself. At least we could understand and empathise.

    wonderful, meaningful comments as ever!.

    Thanks for making me smile :-)

    Oh and LilLil Well done on surviving your outing, very proud of you! Mwah xxxx

  • This has always been my biggest problem - I've lost so many friends since I was diagnosed because I hardly ever socialise and because being around me is such a downer I guess! If its someone I don't know and they ask me in passing how I am, I just say "fine". However, if it's my family and friends and they ask (or someone who needs to know I'm not feeling great), I usually say that I'm in a lot of pain, but I'm coping.

    I realised after a few years that covering it all up wasn't doing me any favours - I was agreeing to do things no matter how bad I felt and always saying I felt fine, but this led to people disbelieving how ill I was, thinking I was faking it, or not understanding when I couldn't do something. I even went and helped clean out my late uncle's house less than a week after having my gallbladder out which almost put me back in hospital! I was making things worse for myself by acting this way.

    Now I'm a lot more honest about how I feel and what I can do - my family don't really understand but that's their problem. I've lost most friends and ended up being treated very badly at work before they paid me off to leave in case I sued them - but the friends I do have are really good friends who I know I can trust. The others are people I don't need. You definitely learn who your friends are.

    Sometimes it's easier for us to put a mask on and pretend - it gets us out of difficult and potentially embarrassing situations. However, eventually there will come a time when all that acting comes back to bite you because people only see you being fine - they don't see the state you're in at home after you've pushed yourself and how long this can impact us for. So eventually, you have to be honest with them and yourself.

    I know you don't want the disease to win and I felt like this for a long time - that's why I tried everything to keep my career going despite the long hours and awful people, and to push myself to do things etc.However, in the end I had to be realistic - I have chronic fatigue and I was getting myself into a cycle of under and over activity - I'd push myself until I crashed then have days or weeks when I couldn't do anything, which would reduce my stamina and mean I couldn't do as much the next time I pushed. This is something you have to try to avoid - stamina is so important. You have to try to pace your activities and gradually increase them each day to improve your stamina - I live by this principle but over Christmas and new year I seriously overdid it. As a result, I've been in a major fatigue crisis for over two weeks - I can't even get off the sofa most days. Don't push yourself too hard or you'll pay for it in the longterm. Take it easy and be honest with yourself.

    Xx

  • Thanks for your reply to this post. We really are our own worst enemies sometimes aren't we! How did you get diagnosed with CFS? My gynae mentioned I prob have it, but didn't say what to do next!

    xx

  • Well, my GP initially diagnosed me with it - I've always had fatigue since my symptoms started at 12, but it got a lot worse and I could tell the difference between my previous tiredness and the chronic fatigue. Sometimes I feel like my muscles and bones have turned to lead, I any lift my head up or think, it's just awful.

    The problem with CFS is that there are no drug treatments available - honestly, despite how bad my pain is, I'd gladly double it if the fatigue went away as at least there's something I can do about pain most of the time!

    When I lived in London, I was referred to the chronic fatigue service at the national homeopathic hospital. I was under the care of an amazing specialist nurse and initially he helped me to learn pacing, then referred me for various things including physio and graded exercise therapy. I was working full time then and he helped me get my employer to change my working pattern and so on. Eventually I had to stop working and since I've started my own business and left London I've been a bit better, but I really overdid it at Christmas and I'm now having a major fatigue crisis. It's reminded how important pacing is so I'm trying to start again.

    Pacing is the most important thing you need to learn - you'll find that pushing yourself leads to a cycle of over and under activity. Each time you push yourself to the limit, you'll crash and won't be able to do anything for a longer period of time. This means your stamina goes down and you'll end up being able to do less when you need to.

    Instead, you have to keep a log of what you do every day and see where you're overdoing it - you then need to stick to a similar schedule each day as much as you possibly can. When you're on an even keel, you can gradually start increasing your activity and improve your stamina. It's hard work and takes time but it does work when you stick to it.

    I don't know where you live but there's probably a similar service in your nearest city. I'm sorry I can't say that theres an easy solution or a particular treatment, but there are things that can help. There's lots of info online so you can get started but it does help to get professional support.

    Hope that helps

    X

  • I had 12 weeks off work, been put on Zoladex to see if my pain is gynae related. I am on light duties at work for 3.75 hours and that is enough and on some days a real struggle. Every morning my male manager says 'how are you?' i tell him my pain and he just looks blank! Also work colleagues say 'are you better now?' then i have to tell them no, then they say 'why are you here then'! Had an awful sleep last night lots of gas and pain in hips. Start work at 1.45pm today and at this point in time i am dreading it. Wish there was more awareness of Chronic Pain.

  • It took my husband a long time to be able to spot it as we get so good at covering up. Before I had to leave my career, I remember emailing my boss about reasonable adjustments under the DDA and she said "you're not disabled are you?". If they could experience what we do for just one day, they wouldn't need to ask! For a long time I've wanted to write a book about "invisible disabilities" and how to cope with them - things like needing a seat on public transport and so on are my biggest issues - I used to be doubled over in pain on the tube and very rarely would anyone offer, but I had a broken arm once and I got a seat every day! Crazy!

    One thing, about your bowels - I any go on my own any more because of the morphine so I have to take bisacodyl (Dulcolax) every three days. To avoid tearing and piles, ask your doctor to prescribe a stool softener - I used to get lactulose but it made me so sick. I now use Dulcoease which is over the counter. Also, always keep some glycerine suppositories at home - they just soften things up and make it easier to pass without causing any damage - they've prevented a trip to hospital more times than I can count!

    Finally, maybe ask your GP about taking tramadol instead - I found codeine was awful for constipation, even at relatively low doses, ad that tramadol wasn't as bad. Morphine was fine too until my dose got very high.

    Hope this helps

    X

  • Thank you for the advice. I'd been ignoring the tear as I've had other things to deal with but I will follow your advice before it gets even worse.

    xx

  • You're welcome - I know how horrid bowel issues are, especially now that I can't go at all unless I take laxatives. It used to be hell on earth when I was working full time as they're so unpredictable I could only go at weekends!

    The good thing is that all the things I mentioned are available over the counter so you don't need a prescription. Glycerine suppositories are only about £2 a pack too - they're good when you really can't go and are worried about a tear as they work within a couple of minutes (stay near the loo!). If its not an emergency, taking lactulose or Dulcoease a few times a day will help to keep it manageable. These draw water into the bowel so they'll only work properly if you're drinking lots of fluids - I hate drinking loads of water but if you're constipated you have to! Lactulose and the glycerine suppositories are very harmless and don't have a maximum you can use (no drugs in there) which is good - not sure about the Dulcoease but it's probably similar stuff.

    Sorry if this is all tmi for anyone but it's important info to know if you're on opioids and not something people really talk about.

  • There is no such thing as too much info when it comes to endo! I also struggle to drinks lots as my bladder pain is worst when peeing :-(

    Will be off to the pharmacy tomorrow

  • Hope you guys don't mind me saying thanks for the advice as well. I've learnt quite a bit over the last two days reading your posts.

    We don't do ourselves any favours sometimes however it also depends on the people around you, who you are trying to confide in. I too have lost friends over this condition because I can't go out or run around at their beck and call. I used to drop everything for friends and family irrespective of how I was feeling however when I needed someone there was, shock horror no one there. I've copied with most things on my own all through my life. That isn't necessarily a bad thing but some times it would be so nice to be taken care of occasionally. I've even lost boyfriends because I find sex really painful. Oh Mr right where are you. I tried explaining things in work so people wouldn't feel paranoid or think that I was a funny moody moo. Instead of helping matters it made them worse, I was accused of making them feel uncomfortable. I feel like I am expected to take what ever anybody throws at me and not say anything. I try always to be sensitive to other people and their feelings but people don't always return the favour. Good old me I'm ok they haven't whipped my womb out so I can't be that bad. I'm currently on the sick and feel like I am going completely mad. My mum is brill but even she finds it hard to fully understand what's going on and the desperate need I have to have children, which now seems to be a pipe dream.

    There should be more in the news, on the telly about Endo and tell the whole truth about how horrible this condition is.

    Some people can't see what is in front of their face and in stead of offering help they criticise and condem. What an awful world we live in, well it's not the world but some of the people in it unfortunately.

    Gosh hark at me, so sorry to rant, been holding all this in for months.

    God bless to all

    xxxxx

  • Feels good to rant to people who actually understand doesn't it? I used to have an active social life but friends slowly drifted away as I got ill. The crunch point came when I invited all my friends to an endo UK fundraiser and was shocked by how little response I had, even from someone I thought was a good friend. The two people who made the effort have health problems too. They are now my closest friends.

  • Hi EndoEm gosh you are so right, it feels (not that I want anyone to go through this condition however) like a relief to know I'm not the only one to have this condition (with all it's other complications). I'd never heard of Endo before. Who ever started this sight needs to receive an award because it has helped me no end to find wonderful, caring people who really understand.

    Can I ask your advice on the work front, what do you think I should do? How should I handle it? Am completely lost as to what to do I can't believe what they've said and done. My staff spoke to my line manager and have exaggerated and twisted things to make me look awful. I really haven't done what they've accused me off. I agreed to stay off until the fourth lot of operations were carried out, to save their feelings, but it hasn't really done me any good as now having been isolated at home I've become affraid to go out the house and get quite back panic attacks. I can't keep staying off work but I don't think I can go back. To top it all off I've just found out that following a major review of the company I work for they are getting rid of my job/department.

    Feeling really crap at the mo. Any advice you could give me would be really appreciated. x

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