When someone dies, people tell you a lot about the stages of grief. I believe there are 4; it says something, though I’m not sure what, that I can only ever remember 3 of them at a time. Right now though, I know exactly which one I’m fighting with: anger. I’m angry and I’m frightened and these are not good, or safe, emotions.
I’m so angry about so many things; I’m angry that Freddie didn’t die when his twin did so that I could have saved myself that pregnancy and the girls all this grief. I might have grabbed hold of the last of my fertility and got pregnant again and have a living, breathing child by now of nearly one years old. I’m angry that I didn’t say loudly enough that I was sure there was something not quite right with the way he flopped about and the way my bump felt too tight. I’m angry that it is written in my notes that I felt that he was small and I asked for a late scan and I was told no, I was low risk – and I was happy with that because I wanted to be low risk for once. I’m angry I didn’t shout louder when something felt wrong. I’m angry I didn’t go to the hospital that night, when something felt just a bit unsafe. They might have done nothing, might have sent me home, but I would have known and when he didn’t breathe, I would have had someone to blame.
I’m angry with Peterborough for making me that frightened; I’m angry that my new hospital was so good, so lovely, so kind and so supportive that I trusted things to go right. I’m frightened that I killed him by trusting people, trusting myself. I’m frightened that the simple act of walking into the room with the pool, of getting in it, killed him because it was harder to listen. Even though I know really that isn’t true. I’m frightened we made a mistake, somewhere, someone, and he’s dead because of that. Even though really, really, I know I knew the day I stood in my living room, trying to visualise father and son watching football together and just couldn’t make the picture come.
I’m angry with myself because I knew something was amiss. I’m angry that I let him have that drug that sent him so catastrophically to sleep. I should have said no, I refused to say yes, but I should have insisted they wait until a consultant came. I’m angry I was robbed of time with him awake, I know my gut instinct was that it was the wrong thing to do, I’m frightened that lurking somewhere in his notes is a mistake or an error or proof that it was the wrong thing for him. He couldn’t deal with it, couldn’t process that drug and I don’t know why and it frightens me that I didn’t say no, didn’t stop it being given to him. I didn’t trust my instincts with Freddie – and I should have. It might have made all the difference.
I’m angry now because, as soon as we knew we would try again, I started to tell people, doctors, consultants – anyone who would listen – that something was wrong with me, that something had felt really out of whack for a long time and that if they didn’t help me, I would not be pregnant by the end of the year. I’m angry I was right. I’m angry no one has listened, really listened, to me saying that, even though I know myself well enough to just be completely sure that something is wrong. I’m too easy to fob off; you’re old, you’re stressed, it’ll happen but you have to be patient. I’m absolutely SURE I’m right, but I can’t get anyone to listen. If I ask for things, people do them, but I need someone to find the problem. They think I’m a stressed, grief stricken older mother with a little too much dangerous knowledge from google, but I’m not. It’s an instinct and I appear to have been proven right.
I’m angry that I’m low priority. It doesn’t matter to anyone if I never have another baby. It doesn’t. I’ve got 4, I should be happy. I’m lucky. I’m angry that no one can see that I’ll cost far more, far more damage with happen, if I never have another. I’m running on empty now. Infertility is one thing; infertility after you’ve watched your baby give up and stop breathing is something else. * I’m worried and frightened. What if there is something lurking, some imbalance that no one has spotted because I don’t matter and in 5 years I find out it has seriously affected my health? What if whatever is stopping me getting pregnant is also what killed Freddie? What if the answer is right in front of us? What if I killed him, not by birth choice but with some horrible blood thing, or antibody thing or just something that is stopping me getting pregnant and if I do, will just kill another baby, all over again? Why am I having so hard to persuade someone that so many changes in my body is not right. Why won’t someone just hear me? Why do I have to fight against deranged hypochondriac on top of everything else?
What if?
Tomorrow I go to pick up Clomid, for one last try. Only, I know I’m ovulating, I have no hope at all it will work. Something is blocked or something is broken or something is stopping me from ever getting a chance to start. It felt wrong to talk about ttc-ing in Freddie first year of not being here, but honestly, so much of the grief has been the horribleness of having hope ripped out every 21-24 days. It might not be a fix, to have another, but it couldn’t be much worse than this. I can’t help wondering if people would be more keen to shut me up by throwing everything at getting me pregnant if I was suing them. I feel like I being too acquiescent, too passive, someone who will just go away and be grateful for a blood test and an “everything is in normal ranges”. It’s not that I’m not grateful they are, but if they were all perfect, I’d have another baby by now. I need someone to work out what the hell has gone wrong. I need to know why my little boy died. I just need, desperately need, to feel like someone is desperate to work out what went wrong and how to help me before I fall apart completely.
I’m not going to get that on the NHS. However nice people are, I’m right at the bottom of the heap of women who deserve help. I can’t afford to go privately. I just can’t afford to keep waiting. I’m exhausted. Frightened, angry and exhausted with no one to blow my anger out at. I almost wish there had been a mistake, something for me to blow my top at. It was easier to rant at Peterborough for the endless insensitive incompetence they called ‘care’. When I’m surrounded by people who have been good and kind and patient, it’s an awful lot harder to find someone to vent it all on.
*Feel I should qualify this. I am comparing struggling to get pregnant with Freddie against struggling to get pregnant after Freddie. I’m not suggesting this is worth than people with no children or not nearly enough children.
Sorry honey, just wrote a long reply, but none of it helps. I think you have every right to be angry. I’m just sorry you have to deal with infertility on top of losing Freddie, that just bloody stinks. And fwiw, I am hoping hoping hoping for you. x
Insist you are checked over and insist on a second or third opinion if necessary. If your instincts are telling you something is wrong then go with them. That said it may not be anything to do with what happened to Freddie but if you don’t feel right then I think that doctors should listen and do all they can to diagnose and ensure that they have rule out as many things as possible. I’m also wondering whether visiting an alternative practitioner may help. It’s not always easy to find someone who is thoroughly knowledgeable and trustworthy though. I personally feel that Chinese medicine practitioners (but one who is a qualified doctor from China and with a good command of English and not just one of these high street quack places – there are also Westerners who are trained in acupuncture and Chinese herbal medicine and have studied in China too) have a different slant on diagnosis which can be helpful to complement the Western approach. They can look for imbalances in a different way and won’t go along the “you’re just being hysterical” which is how they seem to label women who raise issues with GPs etc. It may help pinpoint if there is anything.
Nothing to say really except what I’m sure you’re feeling – it’s not fair. I so hope this time is the one, and you’ll get the baby you so need. x
If you can go private for at least some tests you feel you may need it might be worth it. Such as immmuglobulins etc I went private for an entirely different reason, the rest is dealt with by the NHS, but I’m glad I did it.
Oh Merry. Sending you a gentle cuddle. And hoping and sending love. xxx
Ack my first comment disappeared! I said that you have every right to be angry. You are not being listened to and if your instincts are telling you something is wrong it is important that doctors should be doing everything they can to rule out and put you at ease. Your instinct may not be specific as to what it is about but if you feel it is ‘wrong’ then I’d insist on a second/third/fourth opinion. It seems that many doctors think that women “become hysterical” still which hasn’t gone away from the last century.
Another option may be to seek an alternative medicine practitioner e.g. Chinese/Oriental. They may not be able to put it into a Western concept but at least it may help to diagnose your energies. If you do try this ensure that you utilise someone who is not just one of the high street quack shops and that they are a qualified doctor in China and ideally in Western medicine too and have a good communication skill in English (otherwise you end up not knowing what is going on). Even if you can only afford to go once their diagnostic skills may be very useful.
Nothing to offer other than to say all of what you feel seems fair enough. This is so far out of my field I don’t have clever ideas but can only say that if you don’t get far with first opinions, then seeing someone else is absolutely what you should do. Are there any fertility experts locally that you can see? I know the whole private package can be expensive but if you balance that against the personal costs of not turning over every stone and the ongoing years of uncertainty…?
Keeping you in my thoughts xx
The doctors at my surgery were awful, totally unsupportive and unhelpful. So I moved. The hospital have been lovely and very kind… but it all just moves so slowly, there is no room for emotion in it, it is all just so very wait and see. But that is system, a system set up to not care very much for infertility at all, much less 37 year olds with 4 living children. The people are kind, I know they hope I’l get a baby.
I need someone to run a heap of tests and work out what the bloody hell is wrong, because I know something is. There are too many bits of me behaving oddly.
I feel impotent, that’s what it is. I can’t make anyone help me. I could pay, except that is a can of worms financially and emotionally. I’m infertile and impotent and it is driving me mad. I couldn’t save my son and I don’t know why and now I can’t save myself.
Have you written down all the things that are *behaving oddly* and presented them to your GP? I guess you probably have. If you feel something is wrong then you are just going to have to keep pushing, and if it takes going private then you are going to have to just do it. If DH hadn’t listened to himself and had listened to the first GP he saw, and then the A&E registrar who laughed him out of the hospital, he would probably be dead by now.
Your issues aside, are you BOTH being checked out for fertility issues? Because taking age into consideration it may not be just you.
I am a firm believer in instinct, don’t be fobbed off! I’d also suggest that an indepth consultation with a good homeopath would be worth the investment – whether you believe in homeopathy as a treatment or not, the consultation itself is a valuable thing to do and it might just give you some pointers that you can take to a sympathetic GP. Our GP in St Ives used homeo 15 years ago, so if you could find someone like you could get the best of *alternative* and *orthodox* on the NHS.
There are some things that have to be done before Clomid and yes, age is on neither side of us, that is for sure.
I did try to take a list to a doctor; he told me to be grateful for my living children 🙁 But some time has passed. I think though that people tend to say “age, stress” as a default reaction and anything I say the response is just “things change with age” and I’m sure they do… but…
i think you are right. I feel like I’m exploring options slowly as I’m frightened of what to do when options run out. But if they haven’t already, my eggs will run out soon.
I wish people understood how upsetting and stressful it is to be told “age, stress” too. I know it does explain a lot, but it is so damned misery and stress inducing.
You know where i am if you feel the need for a pair of *alternative* ears 😉 xx
I wonder if your garden is big enough for me and my tent….
It is 😉
Sounds like you perhaps need a clever general physician who can have a look at all the different problem areas and try and tie them together rather then a fertility specialist per se (providing all of the relevant parts related to fertility are working and i’m guessing you’ve been bled and scanned already). Sometimes as a specialist the temptation is to concentrate on your area of expertise and, speaking personally, the knowledge of other problems especially the rare is not always there.
On a different tangent completely, have you tried reflexology? No idea how or why it should ‘work’ but I have seen several people who have had a problem area located by a reflexologist. (Complete selection bias I know but even if all a session gives you is space to relax and a decent foot massage, if you can tolerate that kind of thing, then you never know.)
The big problem is that even with the technology currently available, there is still so much that is unknown that you could jump through all of the hoops and still be in this position. Lack of certainty and loss of control are two of the most difficult things to live with. Even if there is an answer there and it is awful then at least it is an answer and you can get on with tackling it. Limbo is a dark place but you’re not on your own.
Here with fierce hope for you, despite everything, and a hug, and much, much love. Wish I could find better words. xx
It’s well worth being pushy if needs must.
I asked, and got, a 2nd opinion a few years ago which resulted in a referral to a rheumatologist and a diagnosis of an inflammatory type of arthritis linked to a gene I have, most inflammatory arthritis are autoimmune diseases like mine and are not always obvious or easily tested for. Later I also pushed for more and it was discovered I had a large prolapsed disc as well and a back condition that made me prone to prolapsed discs that cause problems.
.
I’ve recently seen a consultant privately who’s also an NHS consultant in my PCT and got a life changing diagnosis of something that I’ve struggled with since I was a child. After that initial private assessment I’m now under NHS care for the condition.
It took 2 years to get pregant with P. I had 2 miscarriages while trying for her during that time. It was 16 months between one miscarriage and the next and then I finally got pregant with P. I was 32 and got the age, stress stuff too.
Hugs Merry, I wish I had some sage words but I just wanted you to know that I was here and read your post and wished I had some better words xx
Merry three years out I still carry so much anger. At myself for letting my caregivers make me think nothing wrong, and for those midwives for not listening to me which I believe, ultimately lead to her death. I don’t know how to ever let go of the anger, as it is so tied in to all that happened, and it shouldn’t have happened.
I know I didn’t suffer from infertility after I lost her and for that I am forever grateful, especially as she was my first and I was so desperate to just have one living child. I hate to think what people must say/think about you because you already have four living children of your own. They don’t take any of the hurt away, replace Freddie or make any of this ok. I so hope you are able to go on to have another, because I know first hand how healing that will be for you.
I resonated with so much of this post, despite how different or circumstances were.
You’re not alone.
xo
I’ve nothing to offer that will help, except some invisible blogosphere ‘support’. Apart from Freddie and the ttc issue, it sounds like there are other things which are bothering you (physically) and presumably it’s important to sort those out anyway. Like a lot of things in life, you need to look after yourself first in order to look after those around you. If you are off balance, off-kilter or unwell, it’s worth sorting that out – and that’s something that your GP and consultant/s should take seriously.
I think I’d do three things in your situation: 1. go back to the GP; 2. look into a good local practitioner of some kind (chinese/homeopath/nutritionist) and 3. forget the Clomid.
37 isn’t old for making babies. I had my first at 35 and my second when I was 38 (with 3 early m/cs in between). I wish you lots and lots and lots and lots of luck with this. I hope that you find the magic person and or the magic answers that you are looking for.
Just wanted to say thank you for all the comments. Really appreciate them and have got lots to think about. Meeting was very draining and loads of annoying co-incidences made it tough. We have a plan, though whether it will work, I don’t know. Am also going to go and deal with the nasty gallbladder query and have a think about cutting gluten out of my diet to try and control some stuff.
Merry I have no answers and no ideas for you, I do not know how your NHS system works but it sounds terribly frustrating to me and I’m sorry you have to go through all this additional stress on top of what you are already dealing with. I’m angry with you that nobody is willing to do what it takes to help you figure all this out. Or maybe nobody can or whatever the reason, I wish you weren’t having to fight this fight.
There is so much more I could say in relation to much of what you wrote, but I won’t take over your post. Suffice it to say I understand much of it (though not all) and am thinking of you and hoping and praying for good things to come about for you soon. You deserve a break already. xx
Jenn, the NHS is different in that it has a set of things it can do (which they’ve done with no argument) and then after that there are thing which are essentially more available to people with no children. I clearly don’t fall into that category. After that I have to decide whether to go private; as we have no ‘insurance’ for that, we’ve always been NHS not BUPA or whatever, we’d have to pay. Realistically, i am not sure I can justify spending family money we need to bring the girls up on getting pregnant.
Merry, I haven’t been following your blog for very long so I don’t know if you have gone into this elsewhere, but you wrote about trying to conceive and being disappointed every 21-24 days. You probably know this, but… are you charting, and do you know if your post-ovulation phase is adequate? Short luteal phase can be a common infertility cause and I believe it becomes more common as you age. Clomid can help this – it extends the luteal phase to up to 16 days, IIRC, so maybe that’s why you’ve been prescribed it? A short luteal phase can also be linked to mineral deficiency, and I think it’s magnesium and selenium in particular – I’ve known quite a few women with short cycles, having trouble conceiving, who started taking supplements like Magnesium-OK and who found their cycles extended significantly. And just on the smallest chance you haven’t come across it already, Taking Charge of Your Fertility by Toni Wesschler is the most wonderful book about how the female cycle works, and how to work out what’s going on with your body. There’s lots on http://www.tcoyf.com. Sorry, I don’t want to be yet another person suggesting that this or that may solve your problems, but you strike me as someone who would rather have too many suggestions than too few.