How to keep normal life going during IVF / infertility?

[CurbsideProphet]

I'm really struggling with keeping normal life going while I grieve my August (IVF) miscarriage and worry about December FET (we only have 1 frozen embryo and my mind keeps insisting it won't survive the thaw).

I spend 35 hours per week listening to other people's problems on the phone. It's awful but I'm really experiencing empathy fatigue;
Family are desperate to see me but it's such hard work acting normal. I don't have the relationship where I can't act normally with them and sibling's child keeps asking about having a cousin;
DH is struggling with "performance issue" - unsurprising when you consider the lack of sex during IVF and the pressure on him to fill the cup (so to speak) in a very timely manner on egg collection days. It breaks my heart that he is unhappy;
Friends either have children or have no interest in having children, so either way it's difficult for them to understand;
All these Instagram accounts telling me I need to improve my mindset while I'm in my reserves when it comes to mental strength;
Housework, looking at all the decorating that needs doing etc;
Already feeling down about another Christmas having to pretend to be happy;
Complete lack of support from ILS. I just don't know how to have any relationship with them now;

I just don't know how to keep normal life going while we're dealing with this? We've got a free counselling session soon but after that we would need to self fund, which just feels like something else to worry about paying for and organising.

I also feel like I'm horribly self centred at present (especially reading this back) which is something else for me to feel awful about.

Gosh @CurbsideProphet so much of what you say I could have written. I also have a job that involves helping others and I guess the benefit is that it takes my mind off my issues. I find when I'm dealing with more mundane tasks my head just can't focus. It is hard though, especially when someone is talking about something that seems insignificant in comparison.

My life has been on hold for a year now, nothing else seems to matter and I feel like you, like I have so much going on that it does seem that I'm self absorbed. I have cut my friend circle down and my friends that I talk to understand. I have been there for them in the past so I'm sure it will even out.

I have recently started seeing a clinical psychologist. She suggested I sign up to an art class. But instead I joined a gym, my gym shut down in the pandemic and I have put off joining another one because of IVF. I'm glad I joined, I am signing up to all their yoga classes and knowing I have something to leave the house for in the evening is helping. Otherwise I just sit at home reading research papers on infertility.

@CurbsideProphet I am so sorry about your miscarriage I am feeling the exact same way as @Gardenlady543 has said a lot of what you have written I could have written.

I don’t think your self centred at all it is such a difficult process I have just had a failed fresh Ivf now waiting to start a frozen transfer i don’t want to see any family or friends as I just feel so down and have nothing to give anyone at the movement.

Sending you my love and a virtual hug xxx

I think what you have to do is find the "new normal" life - for me it felt like I was just going through the motions for a long time - just treading water doing the minimum I had to - life centred around planning ahead - next transfer next cycle next bank loan - I did 5 rounds of self funded IVF in 18 months - I realised pretty quickly that life wouldn't ever really be like it was again even if IVF was successful because resentment over lack of support from family and friends when I needed it wouldn't ever really be forgotten (or forgiven) (I had multiple miscarriages, multiple ectopics, multiple failed IVF). No matter how hard you try infertility changes you - some people might think for the worse but for me I definitely came out stronger if not harder.

@Gardenlady543 and @Lotusflower1990000 💐💐 thank you so much for replying.

@Gardenlady543 I find it really difficult listening to people in general now, serious or trivial issue. I just don't have the mental energy for it. I had a miscarriage early 2020 and was referred for IVF in late 2020, started in Feb. Life is still on hold and DH hates it. We can't keep going on like this indefinitely, but equally I can't consider stopping. It's so hard when you only want the one thing that feels so far out of reach.

@Lotusflower1990000 I'm sorry about your failed transfer. It is heartbreaking. I completely understand the feeling of having nothing to give anyone. I am there with you x

@CurbsideProphet is there anything else you can do at work? Like a temporary role doing something where you don't have to listen to people's issues? It sounds like you at least need a break from work. I'm using all my annual leave for IVF and I am so exhausted :( but I feel like I can't go on holiday because of treatment.

I feel you, my life is on hold too and I can't see a future right now. Joining the gym was such a big step for me as it's like I'm taking control of something and doing something that was normal for pre-IVF me. Yeah I can't stop either because I need to keep going to get to where I want to be.

So sorry to hear about your struggles. Infertility has totally consumed my thoughts although I try my hardest not to let it consume my life. I try and focus on one thing /task at a time and then when I’ve completed that move onto the next. There is always that underlying sadness that somehow you’re just not ‘complete’ just not your full self. I find that side of it the saddest, knowing that I’m not living my life to the full because there is the one thing missing.

I can’t give you any advice I’m afraid, maybe just words of encouragement, to keep reminding yourself of the positives you have in your life and to try and do the things that will bring you some happiness if possible. I know it’s not for everyone, but I have a horse and I find the physical and mental aspect of riding allows me to totally forget my fertility struggles just for an hour a day, for me that has been an absolute life saver, perhaps you could try and find a hobby that challenges you both mentally and physically?

Good luck with your journey, it’s the hardest thing in the world x

@tiggerwhocamefortea I'm so sorry you've been through it all too. I've definitely experienced lack of support.
My DM makes everything about how worried she is, so I can't talk to her.
MIL hasn't said one word about any of it. She came round 1 week after my miscarriage surgical procedure and I thought she would bring me flowers / chocolate / something to show she cared. She said nothing / brought nothing. I've spent years trying to please her / find common ground. I'm now absolutely finished with that. DH's siblings have been similar. No interest in what we're going through, but furious that DH is more focused on me /our IVF than their pregnancies / babies.
I'll always be polite, but I'm total grey rock now. I don't want to be overwhelmed with resentment, but at the same time I can never forgive or forget their lack of care.

This all really does change you. Even if we have success I will always be affected by my miscarriage as newlyweds and the embryos that could have been our children. We should have a 1 year old now which would break me if I thought about it for too long.

People say to me "you're so strong" but I'm really not. I'm only getting out of bed everyday for DH and his mental health.

@Gardenlady543 I've taken tons of sick leave rather than use my 5 weeks annual leave. Most recently I was covered under pregnancy related illness which is miserable, but at least it's not on my record. You must be absolutely exhausted 💐 Unfortunately no I can't do anything else at the organisation.

It's so hard isn't it. We can't plan anything. We've been invited to a wedding next spring and don't know what to do in case we're still doing IVF. That is just mental. 8 months notice and we don't know if we can go.

@CurbsideProphet oh my, literally everything you wrote I could have written. In fact I just spent this evening chatting to a friend about how I felt about 'everything infertility' and everything you said, I said to her. I'm finding it so hard to slot back into normal life, I find it hard to concentrate at work and I have zero motivation for anything. I honestly feel like quitting and doing something completely unrelated, just to have a change - something to distract me completely from IVF. A couple of my work colleagues have told me that they're pregnant (they know about my infertility struggles) and I also work with children! So it's so hard to escape the whole babies, children, fertility topics. I honestly wish I could win that £185 million on the euromillions next week, quit work and just go on this epic over the top holiday and not have this IVF black cloud hanging over me!

But I do want you to know, you are not alone! There are plenty of people who feel the same as you do. You may feel isolated and alone, but you're not.

@Nearlymyturn yes I feel that sadness 💐 and the all consuming nature of it all💐
I keep imagining that I've fallen into the "upside down" (it's from Stranger Things) so everything sort of looks normal but it's all like a hideous reincarnation of reality.

I imagine your horse is such a comfort. They always seem so wise. I found going away for a few days to the Lakes therapeutic while we were there. We're going to try to pop over for regular day trips as it's the only thing that has brought us anywhere remotely close to happiness in at least 12 months.

@ohsheglows just saw you have also replied 💐 it's really good you have a friend IRL you can speak openly with about it all. Oh god I don't know how you manage your job. I have no motivation but at least I'm WFH and not seeing anyone face to face. I'm there with you literally praying for Euromillions 🙏🏻🍀🤞🏻

It really is a dark dark cloud. People have absolutely no idea how bad it is. Everyone seems to think IVF is a sure thing, so DH and I just need to be strong and think positively. I don't feel like I can tell them how low I am as they just can't comprehend it.

Hi all, I’m coming out the other side of this ( finally got pregnant and seems ok 🤞)
I had nearly three years of mmc ( 3) chemicals and two rounds of ivf. I became depressed and went on sertraline, still on a low dose now. It was the darkest time of my life. I have lost contact with my bf as she was pregnant at the time and I couldn’t cope. I am the breadwinner and my job was a mess, I was taking weeks off at a time mc. I used holidays for ivf so never a break.
It’s obsessive and dark
I found shielding myself helped, the constant social media and friend pregnancy updates were so painful so I withdrew. It helped a bit
I started counselling. It was good to talk to a stranger. I confided in those that were sympathetic or had experienced it themselves. I avoided those who said clueless thoughtless things.
I do think sport or an activity helps , I’m a bit lazy though so I used to read inspiring books instead, people overcoming adversity.
I felt taking control helped and having a plan. I did a low carb high protein diet , took the right vitamins etc and planned ivf clinics and a plan b if that failed.
Ultimately, until you get pregnant or you decide to end the journey, the feelings of obsession, desperation and darkness don’t leave. You just have to learn how to cope with them

I completely understand where you are coming from! 3.5 years TTC here and 2 failed cycles, genuinely feel hopeless and like there's no end in sight. I agree with others in terms of withdrawing from things that are triggering, I made a separate Instagram account purely for fertility where I follow and interact with other women going through the same as me.
I also got fed up with how much infertility affects my day to day life, from avoiding friends with kids to not being sure if I can attend events/go on holiday in case it clashes with another cycle. I've picked up knitting in lockdown and trying to focus on making new projects and maybe something like that might help? I've also decided that me and DH do some day trips on weekends, just something to look forward to and break things up a bit, we both love traveling but haven't been able to obviously with covid and having to take time off for IVF. Hoping to do a city break at some point though!
Definitely worth considering counselling personally that has really helped me, although I know it's not for everyone, your clinic should offer more than 1 session?!
Just wanted to let you know you're not alone xx

@Love2Luv everything 🤞🏻🤞🏻 for you. Yes I really do feel the obsession and darkness. It's excruciating isn't it. I worry very much that if we never have a child I will carry this sadness forever. I use so much energy pretending now, I don't know how I could do this for the rest of my life.

Thank you @Roo45 I really appreciate you replying 💐 We've discussed doing weekend day trips so we're definitely going to make the effort to do nice things.
I do yoga on zoom twice a week. I don't do much else (apart from reading / gardening). I love to swim but health club memberships are so expensive here. The nearest once 15mins drive away £60 pcm 😳 I just don't know how to justify the cost when we spend £££ on medication and I'm facing pending restructure at work.

Our clinic provides 3 free counselling sessions per cycle. We had already used our 3 sessions so we're getting 1 extra session because of my miscarriage. I have previously had EMDR which did help, but it's £60 per session which again feels like another financial burden.