Helpful Self-Talk, Anyone?

[flyagaric]

Hello all,

I think I’m seeking some emotional validation and reassurance. My symptoms are kicking off again after a couple of years of almost-freedom, and I’m finding it hard to adjust my mind frame. I’ve had 3 laps, pain management, and made endless lifestyle changes. I have wonderful support at work and amongst loved ones, but nobody really understands what I’m going through - I hold no grudges about that, I’d rather nobody had to go through endo!

I just think it’s important to feel understood, at this point. I’ve come a long way with my mental health but endo always seems to be able to get the better of me. I normalise and minimise my symptoms so easily, then I rush recovery - I think because I just wish I was better after a period/flare up and struggle to accept that recovery isn’t always linear. I also feel the pressure of ‘normal’ life and responsibilities taking priority - like I’m only allowed so much time to recover before other things are more important. But rushing back into life is just not helpful, for loads of reasons. It’s exhausting to constantly address during a hard time, but I feel I’ve got the foundations of a healthy mind-frame - I could just do with a little help from people who actually experience this!

So, does anyone have any lines they tell themself when they feel backed into a corner like this? Self-loving, self-soothing self-talk?

I’ve found it really helpful to have a solid line to tell myself when I feel like the world’s on top of me. I just can’t seem to find the right words for struggles brought on by endo. Any suggestions are welcome.

I’d also like to quickly say that I’m confident about medical choices I’m making for myself, so medical advice isn’t necessarily needed - this is more for the mental health side of what we go through.

[PaintToughTed]

I think it’s useful sometimes to de-center my role in this. If the NHs were properly funded, if medical practice didn’t have an hugely problematic gender bias in what research gets funded, if gynacology wasn’t by default categorised as non-urgent, would i be in the situation that I am? If I need to take a day off work because of crippling pain and needing to take strong opioids just to cope - is that my fault? Or had the system caused this? Always feel slightly less guilty when I remember that there are societal decisions that have led to the 8-year wait times for diagnosis, and current 2-year wait times for surgery that’s to treat a progressive disease.

Some times anger can be a useful emotion. The rest of the time I’m incredibly upbeat. If I start to feel guilty at any point, I try and remember there are decisions that others have made to deprioritise female health have lead to where I am now.

Ps. Love your handle! X

[BloomingMarvellous]

I use “Acceptance makes things simpler “. and “let go of the banana” ( pain or whatever am fixing on as being THE thing that’s stopping my real self care)

[Sabrinacolada]

Hi,

Completely understand what you are going through. The mental health element of endo can be just as tough and at times feel worse then the actual endo itself. One of the hardest parts initially for me was comparing my life to before I got ill ( rapid deterioration and diagnosis as of last spring) and how it is now. Its feels like a grieving process in itself.

When it's really bad I tell myself it's like a storm and will pass, I just have to sit it out. I think of times I have been in pain/ even hospitalised from pain that eventually it gets less severe etc. I think of even in times of great pain or deterioration the positive elements- even on a bad day just going in the garden to see nature, my little cats friendly face, the kindness of my partner, family, friends.

Like you I rush recovery etc. Days I feel OK I overdo it then burn myself out. I am working to find the right balance.

I have been doing an online CBT course for chronic pain but also have a counsellor who helps guide me. We have identified boom or bust behaviour ( overdoing it when I feel well then crashing). Have done techniques to work on pacing. Another thing that's helped is identifying negative thought processes and patterns and challenging them ( we have been doing a technique called cognitive restructuring where you do a table of evidence that supports and goes against the negative thought etc). I have also found worry time useful ( writing all my worrys on paper for 15 mins in the evening which feels like I can compartmentalise spend less time thinking of them generally). Some techniques are more hit and miss but its like tools in a toolbox to be equipped with. My technique prior was pretty much distracting myself and denial to pretend I was fine. But was physically and emotionally draining.

I can't say it's perfect or works all the time. I am still having therapy and my circumstances have changed ( had recent surgery) so I don't know where it is heading. But I would say having the support and guidance from a professional has helped me personally, especially leading upto my op ( having to decide re hysterectomy), having severe pain not responding to any drug. I was able to do the CBT/ counselling via NHS ( was a 5- 6 months wait for this area). I appreciate everyone's different and therapy may not be for some.

My personal opinion is we should be offered mental health support from day 1/ diagnosis or when reffered to an endo team etc. I woke up after diagnostic lap told infertile, stage 4 with adeno and need more surgery and over a year in agony waiting on furthur MDT surgery. For anyone these life changes will take a huge toll physically and mentally.

Hope you are well today and are having a nice weekend.

❤ sabrina xx