Do you ever just wonder what it would actually be like to not feel pain and exhaustion EVERY DAY!?

[JadeH92]

I have just finished work got home forced myself to have a shower and have collapsed on the bed.

Aimlessly scrolling through Instagram (which I know nothing online is ever as perfect as it seems) and I saw just a simple post of someone folding their washing into neat tiny parcels and putting it away in an organised manner... and I thought about my 2 washing baskets of clean washing which has just been shoved in for several days with me telling myself "I'll do that tomorrow".

It made me think I barely have the energy to wash myself let alone organise my washing into cute little parcels... Which then made me think would I still be this lazy (because that's how I feel) if I wasn't in some form of pain every day? Then thought I wonder what that actually feels like? I wonder if it has changed my personality in more ways that I have thought of before?

We just get on every day be it with work, house work, looking after families (whatever circumstances people are in) and it just made me think of how different I might be as a person.

Sorry for the random post I'm emotional, tired and clearly in a reflective mood 😂

[Noodle31]

I know how you feel. I have been increasingly tired and I think the endo (as well as its effect on your life) just wears you down. It is a horrible disease. But like all things, all you can do is put one foot in front of the other.

[JadeH92 in reply to Noodle31]

Its awful that someone else feels the same but in a bitter sweet way, nice to know I'm not alone. That's is true but sometimes putting that foot forward can feel like a marathon; but you are right small steps is all we can do which is enough! Take care xx

[Moon_maiden]

All natural thoughts, I look back on what I have done just to remind myself. Who I am at the moment is definitely not who I was.

You aren’t being lazy, it’s the condition.

Are you taking regular pain relief

[JadeH92 in reply to Moon_maiden]

It is a shame isn't it from suffering from 15 years old, I don't even know who I was before all of this. It does make me feel lazy at times though, despite my family being amazing some days when I cannot do the smallest of tasks; I wonder if my family think I'm just being lazy and fancy a "lazy day".

Yes I take codeine of an evening and paracetamol and mefenamic day (which I have just started again after finding an old stash) during the day.

Xx

[Hidden]

I agree and have had the same thoughts as you.

I envy my mum and grandma for having so much energy.

I’ve been signed off since December and don’t quite know now how I’ve managed to work full time for so many years. Mainly because I just had to I guess.

Most days I’d be so exhausted it’d actually feel dangerous to drive home.

Took me a long time to connect the exhaustion to the disease though. Do feel it has got worse as I’ve got older though, do you? Xxx

[JadeH92 in reply to Hidden]

That's it isn't it, you don't realise before you slow down how much you are actually pushing yourself. I had to change my job, take a massive pay cut and reduce my hours in order for me to even stay in work (again I am lucky my partner is so supportive and helped me in the decision).

I definitely agree it has worsened as I have gotten older. My partner was only talking about all the stuff we used to get up to when we first got together the other day and how I have changed (especially in a sexual way) but it is all due to the horrific disease!

I hope you get some respite soon and hope work are being supportive! Xx

[MrsDuvet]

Completely relate to your words! I just had to sit and cry a couple of days ago because the bloating, backache and pain just made it hard to know where to put myself. Some days it is really hard to accept that this is your lot in life. It has definitely changed me as a person and has influenced my social life, career choices and faith in making plans for the future (you can guarantee you’ll have a fare-up when you’re meant to be going to a wedding or on holiday!) in the words of Dory... Just keep swimming! X

[JadeH92 in reply to MrsDuvet]

Awe I'm sorry to hear that but sometimes it is just all too much isn't it. It is definitely a bitter pill to swallow and I don't like comparing or looking to other people but sometimes you can't help but thinking why me!? (and I'm not saying I wish it was someone else because I wouldn't wish this on my worst enemy but it sometimes you can't help think when will I catch a break).

I completely agree that it has changed my social life and because of fertility treatment our lives are 100% on hold but even before that I would have to plan months in advance before a holiday to make sure I had medication so I wouldn't be on my period or a letter from the Dr to say I could take the painkillers on holiday with me. I don't think people realise how much planning goes into things people take for granted when you live with a chronic invisible illness!

But you are right 🐠🐠😊 xx

[DAML8]

I totally relate to what you’re saying! You actually made me think...and..it was then that I realised i actually haven’t had a pain free day in 6 years! I’ve been so consumed with the pain for so long i forgot i used to have a life without pain...many, many years ago.

What i would give to go back to that ‘normal’ life, doing normal things and not be so tired and limited 🥺💛

[JadeH92 in reply to DAML8]

It is awful isn't it! Do you get that 5 second pain free moment when you open your eyes some days where you are like oh what's this...then it hits and you are like oh yeah that's the normal feeling to have 😂.

It is sad that I don't remember what that normal life is... to the point I have actually questioned myself before now to think am I in pain today or am I just expecting it so I am feeling it?

Which is just another can of worms because then you get into the self doubt which I feel comes from being told for years there isn't anything wrong and it is in your head.

And responding to your message below, without sounding patronising you can do it. One of my favourite quotes is you have survived 100% of your bad days so far... so you have got this!

As for the surviving I completely get it, I count down the days in work (wishing my life away) so I can have a day off a just rest opposed to counting down the days so I can do something fun I have planned. However, I have started doing things that I can carry out that I enjoy such as baking. Have you got any hobbies or interests that you could start up that aren't too strenuous?

Hope you get some relief soon! My inbox is always open if you need a chat! Take care xx

[DAML8 in reply to JadeH92]

You don’t sound patronising at all....i really appreciate your support. I just really struggle to feel positive at the moment. This disease and pain just takes over my life!

I know exactly what you mean about counting down the days. I made the difficult decision to give up my job in Feb, it all became too much. I was almost falling asleep at my desk from shear exhaustion. I could not continue to work full time on 1-2 hours sleep a night.

I hope things get a bit easier for you too. I’m also here for you if you ever need a chat feel free to inbox me xx

[Rosesimba]

I agree with what your saying i would give anything to go back to a normal life

[JadeH92 in reply to Rosesimba]

It would be nice to remember what the normal was, but I suppose this is our new normal and we have to learn how to adjust! ❤❤

[Hidden]

I am the same. I have forgotten what normal is. I don't even remember how i was before all this. It's affected my state of mind, its affected relationships, I feel sometimes that I am just alone in this endo bubble and everything around me is a blur. Voices of others constantly sound muffled because i am always zoning out into my head. I don't know why i go there it's boring, just moans and groans! 😁

I miss doing things with ease, I also have OCD and not seeing things clean organised and tidy around the house really does my head in but I have to sit there and just leave things alone and ignore them to be able to take care of myself which isn't easy with kids hubby etc.

I am tired of being in pain and exhausted all the time. >< I am tired of not being able to pick things up and play with the kids and do my own shoelaces and sleep flat! All things we take for granted. Even now while sat typing my abdomen is burning and my back feels like its 100 kilos. My life is centred around my hot water bottle. You're not alone. It doesn't help to see how others on internet are, they don't have endo, so don't give yourself a hard time. We do our best despite having this monster of a condition and that's all that matters.

Feel for you.

Wish you all the best

M xx

[JadeH92 in reply to Hidden]

I completely agree, especially with the clean and being tidy. I get really stressy and arsey if the house is a mess (I blame my mum she always said growing up a tidy house is a tidy mind 😂😂) but I then get stressed because I physically cannot do it, so I really feel for you because I cannot imagine what it is like battling that with OCD also!

I worry because we are going through fertility treatment how I will manage if I am lucky enough to have children and battle with myself over that also, if it would be fair even though all I have ever wanted is to be a mum!

My hot water is also my best friend 😂, I have one at home, one for the car (pre-covid I would spend a lot of time in traffic) and one in the office... and then I wonder why I am always boiling hot and everyone is freezing.

Thank you for your kind words and your reply but you are right we are fighting something every day that people may never experience for a short time and that is an achievement in itself! I hope things ease up at least a little bit soon for you! Xx

[Hidden in reply to JadeH92]

Thank you! I wish you some relief too.💕 It'll take over your life if you let it. It's easy to slide down that slippery slope...Have to remind myself to be strong for the kids.

I am sure you'll get there in the end. Just hang in there. Life has a way of turning around when you least expect it.

You'd think given the pain that id just give up on cleaning and tidying. I bought one of those grabber sticks from Amazon and now i tidy up that way! 😂😂

M xx

[DAML8]

The way you have described it all is an exact mirror image to me! I have physically and mentally given up now. I can’t fight it anymore. I am currently just surviving not living x