Log in
Endometriosis UK
40,580 members34,752 posts

Melancholy Musician with Endo; Living with endless decision making drains your spirit.

Hi team,

I have a really difficult decision on my hands, and I thought some of you would relate.

This comes 3 and a bit weeks after my lap removed endo on my UV fold, left side of pelvic wall, and a nodule on one ovary. They also left in some on my ureter as they needed my consent to take that out separately. Welcome Sarah to moderate:severe endometriosis. Oh and don't let me forget the present at the end - the mirena! The device that makes your periods miraculously disppear AFTER 6 MONTHS OF IRREGULAR BLEEDING AND PAINFUL CRAMPS.

2 weeks after the op I got an infection in two wounds, and had to take antibiotics. Yay.

Sorry for the boring details, but just to give you context of the situation:

I'm a musician, and my band have received some funding to go to this thing called the Folk Alliance International, a big gathering of musicians and industry professionals to showcase artists and book them for future concerts and festivals. It's a bit like the folk music olympics, without the medals.

Now I have to decide whether I am fit enough to go. It's draining me to the point of madness. Will I manage the 1am showcase? Will I be able to play all parts right? Will I be able to focus? Will the travelling tire me out too much? It's so hard to know how I will be in two weeks time - we would fly out on the 13th Feb. There are so many what ifs, and I can't just live in the moment, because the moment now consists of steadily increasing cramping and fatigue. Oh yeah...waiting on the first period after the op and now with mirena; bracing myself for that one.

Should I stay or should I go? It's a brain-fuck. I KNOW you will understand! xx

14 Replies
oldestnewest

Hallo, I hate to say it, but only you can decide, and even then only at the last minute.

This sounds like a very important thing for you, but you need to decide what’s more important- this event or your health at this moment. I guess part of the worry is letting down your other band members - are they aware of your illness? They might have some ideas about what to do.

So if you were to go, and you found yourself in severe pain etc, do you have a back up plan? Can someone else step in, or can you drop out? Is this thing annual - can you stand to wait until next year, when maybe you’ll have a better idea of your health?

1 like
Reply

Thanks for your thoughts.

The other band members are aware, as originally it was off the table, but when we got funding, they were like "hey if you feel up to it you should come". I'm a cellist, not the main singer, so they can still go without me, but obviously want me to be there, and because of flights and logistics I need to decide by Monday. They've already offered to carry my cello and the showcases are 4 x half hour slots, which isn't too bad, but its high energy stuff, and really late at night - 1/2am. I can always sleep in and not do much during the day...but I am worried about being stressed if I'm in pain whilst there, and that adding to my recovery time.

It is an annual thing, but you have to apply for a showcase. We have one of the sort of fringe spots this year, so next year or another year, we could be in the running for a proper showcase...so its not once in a lifetime.

I also have to figure out flight logistics with my cello and practice before we go, so it would be hitting the ground running from Monday if I decide to go really!

I keep leaning towards going, and then sheepishly retreating back into not going....arrrghhh!

Reply

Moonglo is right to say that it something only you know, and don't I know it. *sigh* I have two cysts and the pain has been increasing lately. I started dancing last year and we are meant to perform mid Feb. Do I or do I not? I nearly didn't make it to practise last Thursday due to pain and distance and anxiety and had the dancing been a failure I knew I had to pull out. I am still in. But I am further from my last surgery, so the recovery from that isn't in the mix and depending how you feel that is a big one. Got to take it step by step.

So, is your dr happy with your recovery? How about you? Where are you at? Can you put processes and breaks in place if you go? Remember that lots of stress seizes up your muscles and can make the pain of healing worse. Can you talk and rely on your band members to help out? Can you collect support and back rubs? ;)

When you perform normally you will also question yourself and worry about the endo. What do you do to manage your health then? What could you do better? What feels right?

Let us know how you get on. Getting funding is a big deal and it amps up the pressure, but you know you have your body and health only once.

Take a bit of a break and relax and then come back to pondering it. Yes, you need a decision asap, but you need to breathe to make it.

2 likes
Reply

Thanks for the breathing reminder! Much needed :)

As mentioned in my reply above - its 4 half hour showcases over three days, all at 1/2am which is slightly irritating, but in between those there's time for me to chill out.

I don't really know where I'm at...I suppose I haven't got into a routine yet, and I get tired really quickly. Been taking short walks as I really love being outdoors in the woods around my home, but other than that, I haven't been using my brain much! I think that's part of the worry about going - it's sort of getting back on the horse, and I just don't know if I'm ready.

I haven't really spoken in any great detail to my doc yet, I suppose that would be an idea!

1 like
Reply

I think you said it yourself - you don’t know if you’re ready. If you did know it, you would be ready.

If you get tired easily now, chances are you’ll get very tired on the tour, and you need to build up your stamina.

Sounds to me like a conflict of not really being ready, and being put in a position (by the funding) of having to go for it. It might sound like the end of the world if you don’t go, but if your bandmates are supportive, there will be other opportunities to join them.

But at the end it all, only you can decide xx

1 like
Reply

Yeah you are right about the conflict.

thanks for taking the time to understand my position!

1 like
Reply

Hey there.

How are you today?

I am wondering, are you singing or/and playing an instrument? The stamina required for that and how you feel might help you too. Going for walks is excellent. Each day a little further is the way to go. I found Magnesium and vitamins to support my energy helped with the recovery too. And this is independant of your next steps. ;) Just for you.

I agree with Moonglo, and, if you are anything like me, you are also worried not just because you might not be ready (which is quite possible this soon after surgery), but also because it is a big thing for you and you don't feel like they fixed the lot in the surgery so where are you at now etc. with your own body? It isn't just the recovery but also not quite knowing who you are right now. So, who do you want to be? Because you are still you. And if you have a good Dr who responds properly or a specialist nurse like I do, ask away. It might ease the pressure or give you ideas.

I noticed that the exhaustion got less if I pushed myself a little more each day, that was my recovery, it might not be yours.

Your band can and will succeed even if you can't go this time. You got funding, you can do it again or you can even try things you hadn't thought off before. Maybe brainstorm options and ideas for as you get better? What kind of music do you make? I am curious now. Probably because of my volunteer work. :D

Believe in yourself. Whichever option you choose this will work out.

1 like
Reply

thank you thank you for this!

I feel so much more positive about this decision now, thanks to all your replies.

It is SO much about who I am right now, not just the recovery - you nailed it.

I play the cello and sing. The music is quite high energy with some fast tunes etc. This band is quite a mix of folk/bluegrass and americana.

But I play with all sorts of people, mostly in the acoustic/indie/folk scenes.

I have some magnesium somewhere - will go take some now.

I am trying to build up my stamina now with walking every day, though I think I just got my period, so that might not happen as much. But I do find that having even just a ten minute walk can help with the pain, and general sense of well being.

I think from everyone's replies, I have been reminded not to feel too gloomy if I don't go - my musical career won't end, and there will be other opportunities in the future. It's a good thing to make a decision for my own health, and not feel bad about it. It seems simple when you write it like that, but oh boy it doesn't half feel complicated when it's all swimming round your head!

I think also the reminder that when I tour normally, I take steps to deal with my condition and do my best to prevent getting overly exhausted. So it's been useful to think about that. In some ways this wouldn't be as tiring, because I'd only be required to turn up for the showcases in the same hotel as we are staying - so if I needed to rest all day I could, or wonder to stock up on supplies, please myself really. I noticed it's also actually a really nice hotel, so although I might be missing out on the social elements of it all, I'd be in a nice environment, that could perhaps even benefit my recovery in a way...and could always join in the fun if I felt up to it.....hmmmm interesting! haha...

1 like
Reply

Reads like you got it. :) Go you!

Whatever you end up doing, cheering for you, so keep us in the loop.

The cello is awesome!

Edited to remove me asking for a music sample. XD This is meant to be anonymous support, I think, so should have known better. I occasionally do music reviews for a volunteer run magazine I am with and got overly excited.

Reply

Hi Sarah,

Just wanted to say : I'm rubbish with decisions so won't try on that level. But I think what ever desicion you come to, you should be incredibly proud, you are obviously very talented and have worked very hard to get to where you are and have done this despite the pain!

I feel very sad that you have to even make a descion like this, due to this stupid, life altering disease that no one seems to understand except us sufferers. But I hope that whatever happens you can be proud of yourself and make a good recovery and stay strong!

X X X X X

2 likes
Reply

This is so lovely, thank you. It's so reassuring to get responses from people who really understand. Even though I wish none of us had to go through all this! xx

Reply

What lovely, thoughtful responses you've had. Heart warming!

I just want to add a handy bit of advice incase it helps with your decision making. Airports often have a thing called Assistance where they take you through the airport in a wheel chair. It really takes the strain off of your body and eases the stress of travel.

Contact the airport to book.

Good luck with your decision making.

2 likes
Reply

Thanks!

Yeah I know, so grateful to all who have given their advice and shared their stories. It's such a great support and means a lot. Thanks ladies! xx

Reply

Hey all,

Thanks so much for all your replies, each one really helped me think this through.

I've decided - I'M GOING!

My band mates are putting absolutely no pressure on me, so if I miss one of the showcases if I don't feel up to it, then that's fine....

So, just got over a week to get my head together!

xxx

Reply

You may also like...