How to decide when to work and when not to?

[JackieBo]

Hey ladies,

I'm waiting for my first lap in December. I'm 34 and have had awful periods since I started at 11. Was put on the pill at 15 and things were "normal" for so long that at 25, I took myself off without consulting a doc. Things gradually got worse from there. I gave myself a stomach ulcer 2 years ago from taking pain meds so often because I was working through chronic daily pain that I explained away as being related to other preexisting conditions.... the doc treated the ulcer but never looked into why I was in pain so often.

At the beginning of this year, my regular pain suddenly went from being around a 2-4 to 5-7 with attacks that were 8/9ish. (I don't say 10 because I haven't felt anything quite as bad as when my gall bladder almost made my pancreas burst.... that was the worst pain I've ever experienced and it almost killed me... don't ever let your pancreas almost burst. It's bad. 😉)

I've read a number of posts of women talking about being signed off from work - how do you know when you've reached that point???

As it is, I've been put on 4 hour work days maximum by an Occupational Health doctor, but I can't even keep to that. I've been off Friday, Saturday, and today now (wasn't scheduled Sunday) after pushing through Thursday only to finish my 4 hours and come home absolutely in agony.

It's getting to the point that I get really bad anxiety attacks when heading to work because I dread the possibility of a huge wave of pain coming while at work, not to mention the general EXHAUSTION of trying to pretend you're fine when you're actually in chronic, daily pain.

Financially, my getting signed off would be really rough. My husband doesn't make enough to pay all our bills so we'd have to borrow from family, but we are lucky enough to have family that could help us a bit, so I am trying to not let that freak me out too much. Our savings has been drained, not that it was huge to begin with, because my pay checks have gotten so small between reduced hours and missing work.

I just don't know anymore if I am actually still capable of fighting through to get to work or if I am mostly trying out of a sense of obligation and responsibility? I do really love my company and I don't want to lose my position, plus, I leave our flat so rarely these days that a decent day at work really helps to perk me up. I'm a bit worried that depression may really take hold if I were signed off.

I just don't know anymore how to tell if the pain is actually that bad or if it's just all in my head, anxiety and depression telling me to give up and throw in the towel. How do you sort the negative feelings of helplessness from making a sensible decision about your health?

Any thoughts would be greatly appreciated. Thank you so much for your time! ☮️

[Jenjen87]

Firstly Hun, this is not in your head. Far far from it!!

The daily feeling for me and thinking it was in my head was the curse for me. I broke down to my gyno (already had to loads of people 😂😊) because no one would believe me yet my body felt like it was dying inside. Best way to describe it, even if somewhat dramatic 😊.

I did the same as you with work, human contact and felt like I had still had a purpose. I worked from Home when I began at my worst because I thought I was crazy. Then they put me on a return to work programme, great. But still didn’t help, no matter how hard I pushed nothing ever worked.

I had panic attacks at work beaut, every one knows everyone in the company I work for too so that made it even harder. I’ve been there for years too. I feel you here because it’s scary that, for people to you panic too makes it worse. Hugs beaut.

Listen to your body, your not crazy. The biggest mistake I made out of the times I’ve been struggling was to never let my body rest and recover or accept that something was wrong. No matter how much pain I would walk 10miles a day and lift weights 3-4 times a week. As much as I love exercise, again I realise it wasn’t healthy.

Not letting it rest put me in a position for being off for weeks and actually having to be sick. It left me isolated and emotional. I’ll be open with you and this is not something I like to admit as I’ve always been positive. I got to a point where I didn’t want to be here anymore. I would never do anything but I got to that point and from that day onwards my boyfriend and i were not giving up.

Money is not important, I know we need it, 100%, not even for the materials that everyone loves but to live a stable life and be an adult.

I was lucky with the company that I work for, I do have quite a bit of support. Is your work like this also?

Can you work from home?

It’s a catch 22 situation, I was the same as you too, you go to work to feel like I was still somewhat a human being, yet half the time I was out of it and had brain fog galore and didn’t even register people were there.

From my point of view on my experience not advice 😘:

*I was pleased I did actually take time off to recover in the end and so was my boyfriend. I only had my family and me to deal with and so the amount I was drained never reduced but I could chill out a little bit more and reduce anxiety. I used to suffer a lot with anxiety, started managing it and it’s reared it’s head again. Having time off though helped me refocus on me and the relationships that were important to me. You need to be a little bit selfish 😘

*i did work from home, reduced hours and a phased return before I got diagnosed. Since being diagnosed and 3 weeks before I have been signed off. Again though I should’ve just taken the time off because every month I was in the same position but was taking holiday because I couldn’t cope

*i did need this time off but it does come with a little but. It can get isolated so..... get friends round, even if your tired, plan things, trips around the world that you may never go to but could one day, write one positive thing down a day and read them back to yourself. It’s hard but it’s manageable

the money is the hard thing because bills do need to be paid. Are you self employed lovely?

Listen to your body and what it is telling you, I never listened to Mine and it was a mini lesson I learned Hun.

Remember to put number 1 first, money can always be found.

You have credibility it sounds within your employment too so I don’t feel they would make you lose your position. I’d hope not and if they did, there are routes you can go down if they did 😘. Don’t worry yourself though as they should not.

I don’t know if this has helped but hope it has a little bit. I know what the struggle and worries are like so I have tried to make this into a positive to be helpful.

Sending you hugs Hun. Thinking of you.xx

[JackieBo in reply to Jenjen87]

Thank you so much for taking the time to read my rant! Today's just feeling a lot more overwhelming. It's day five of feeling like I can barely get my dog to the garden for a wee, let alone go out into the world. The pain just won't let up. I know that's mostly just where I am in my cycle, not that the pain ever is gone fully, but it is usually a bit more manageable.

If I am to be honest with myself, I frequently push through into work only to make my nights miserable because I pushed through. Then I get up and try again. The four hour shifts seemed to help a bit back in June or July, but they already feel like nothing has changed again.

I worry that it's just the anxiety and depression that comes along with chronic pain and isolation making me think this more than an honest evaluation of how my body feels, but then I have five day spans like this where it doesn't quit and I can barely move.

After posting this, I called my GP and made an appt for her next available time slot. It's two weeks away, but I'll talk to her about it then. I just feel so exhausted, physically and emotionally.

Thank you so much for your kind words!! I hope your day isn't too bad today!!!

[Jenjen87 in reply to JackieBo]

I’ll always listen, I would rant and cry to people near me and they said have I seen a psychologist🙄😂. I/we all understand how overwhelming the illness can be. Some days are so much harder than others.

Weirdly I found that during time of the month it was easier too, I still don’t understand that now😊.

You are doing amazing though getting up and going in to work, trust me. It will make your nights harder but your giving your energy to the day so it’s expected.

I think depression and anxiety does come with it, so it’s likely you have some, this is what makes it feel overwhelming. And it’s hard to manage but the reason I say that is because I felt like it until the minute he diagnosed me after the lap.

It’s turmoil, but when he said yes you have it and we’ve got rid of as much as we can the relief that came with the diagnosis was weird. I’m struggling with worries again now but that’s just me.

The first two days of my lap was strangely the happiest I’ve been in a very long time. So basically saying you could have anxiety but don’t panic about it. You’ve got endo and this aggravates anxiety.xxx

A lot of people couldn’t understand why I felt happy but it because I had been diagnosed with endo but for me it was relief of months, years thinking I was insane. You could be similar lovely 😘.

Have you read about endo-fatigue? Fatigue was one of my biggest problems and I read about that and it’s crippling.xxx

That’s great news for calling your GP just wish they could get you in sooner! Do they do emergency day appointments?

My day is an ok day today thank you for asking. Stay strong lovely, I can see how strong willed you are. You will get through it and I’m here anytime. Let me know how your Doctors goes 😘😘😘

(Ps: I have waffling problems 😂😊)

Hugs.xxx

[Katey73]

Hi Jackiebo, I'm so sorry you're having such a hard time, you're going through a lot. I was in a similar position painwise and like you loved my job and it kept me mentally well so I was desperately trying not to take time off. If you're consultant suspects endo maybe you could as about the prostap injection which shuts down hormone production which is the 'food' the endo needs. Prostap was a godsend for me, I did suffer hot flushes, tired muscles and fatigue but the pain all but disappeared, I carried on working they did the laparoscopy found endo. I know some ladies have had problems with prostap but symptoms (even the bright red hot flushes) were infinitely better than the pain I was in. It took a couple of weeks before the injection kicked in. Hope this is of some help....hugs xxx

[JackieBo in reply to Katey73]

My gyno hasn't even mentioned this to me at any point. They put me back on the pill, which had made my actual periods lighter, but hasn't done anything else to stop the other constant pain issues around the rest of the month. Oddly, now, my period is an easier time than the weeks before and after.

I'll def ask about that next time I'm in. Thank you for the advice!

[cmbxm]

Personally it was my boss who forced me to see a doctor and see if I need to be signed off! I am beyond thankful for her forcing me to go because I wouldn't of done it anyway, and I was beyond worried about paying bills but luckily you still get sick pay, which isn't a lot but is enough for me to pay my bills! I would see if working from home would be an option for you if you're really concerned about your wages and you could always ask your gp to sign you off for two weeks to see how you feel and then take it from there! Hope you start feeling better soon xx