This is a really interesting article, and I can’t help but notice the similarity between the symptoms of what the author calls ‘post-natal depletion’ and ME/ CFS/ Fibromyalgia – doctors and scientists and article writers are constantly coming up with new theories, but given that I got ill right after giving birth in 2003 (and the fact that I have had 9 pregnancies altogether, and at least 5 of those were back-to-back without a break), I wonder whether this might more readily explain how and why I became ill. And perhaps suggests a way forward to get healthy again.
When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.
I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.
The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.
So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.
It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.
There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.
I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.
Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.
Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!
Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.
I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?
Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.
I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.
When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.
My next post will be happy, I promise.
Every now and then, a turn of events or set of circumstances, or even a few words will jump up unexpectedly and knock you sideways.
I’ve had a few of those – my Dad’s death after I thought I had convinced him to live, the moment I saw my house after our tenants had completely trashed it, and the moment I knew my twins were dead.
My other miscarriages were all around the 8-10 week mark, discovered at the 12 week scan to have passed away silently a few weeks before.
But I carried my twins to 14 weeks. At the 12 week scan it was clear that they had ‘just’ died. I had felt a lot of pain a few days prior to the scan, but had subsequently felt movement so I assumed everything was ok. (In later pregnancies, you feel the ‘quickening’ much earlier than first pregnancies.) I knew before the scan that it was twins because I felt so much movement.
But it wasn’t ok. My twins were suffering from Twin-to-Twin Transfusion syndrome – a not uncommon complication of identical twin pregnancies. Some survive with intervention, many do not.
I refused to have the D&C, (Dilation and Curettage) or the EPRC (Evacuation of Retained Products of Conception) that they so tastefully call it now, and which the sonographer tactlessly suggested I have right away, preferring to let nature take its course.
I needed more than an afternoon to process this reality – that the babies I had waited and prayed and longed for so much for seven years were not going to be mine.
I delivered my babies at home – two perfectly formed tiny little girls, Rachel and Leah.
Rachel was much larger than Leah, having been receiving more blood and nutrients in the twin-to-twin transfusion process. But they were both perfectly formed and still.
Fast forward two more years, and I am now over 40, and I conceive again, a surprise ‘last chance’ baby.
But I lost this ‘rainbow’ baby too.
Grief in our society is not really tolerated. It is swept away and hidden in the same way that death is quickly swept away and hidden. If you are grieving for more than a month, or three months at the outside, you can expect to be offered anti-depressants. The idea that you would be in ‘mourning’ for the traditional year or more is frankly unconscionable today.
But I am still grieving 3 and 4 years later, and that is normal and natural. I am grieving for the babies that I lost but I am also grieving for the lost future I thought I would have. Life may look bright, but it’s not the shade of brightness I had envisaged.
As much as I would still love to have another baby, the chances now are pretty much down to zero – unless God decides to intervene.
Can you imagine how it feels to end your family on recurrent loss? Do you think it matters if you have another child or two, or six or ten?
I still, after all this time, have to – for my own sanity and equilibrium – avoid pregnant women and babies (and especially twins) at all cost.
Babyloss mums, it should be noted, routinely ‘hide’ friends on facebook who announce pregnancies or post baby photos.
It is a necessity, because until some healing has taken place, it is a gaping, weeping wound that won’t heal over, and which is easily re-opened.
I knew that my friend’s wife was expecting a baby and was due around this time. I’ve known him for almost 30 years, and her for around 20. I decided I would be brave and have a look, only to find that she had ‘unfriended’ and ‘blocked’ me on facebook. I sent a message to my friend, and he announced their joy and I wished them well. I thought I was very brave, facing my fears, but now I dearly wish I hadn’t.
I then received messages from my friend telling me that his wife had blocked me because she was disgusted that I hadn’t ‘liked’ or commented on her facebook page during her pregnancy. It was apparently a ‘difficult pregnancy’ and she had to ‘dig deep’ to get through it.
How ‘deep’ do you think you need to ‘dig’ when your babies die?
She was apparently very disappointed in me and had “expected more” of me after being friends for so long.
Does it really need to be said that to expect a babyloss mum to support you through your pregnancy is wholly inappropriate and unreasonable?
I guess it does.
The conversations I’ve had with other babyloss mums tell me that I am not the only one who has received insensitive and thoughtless comments from unthinking friends who are unable to see past their own need.
I’m sorry I wasn’t able to ‘be there’ for my friend or his wife, but I was totally the wrong person to look to.
If you have a twisted ankle, you don’t go to somebody with a permanently broken back for help with walking. I know it’s not a perfect analogy, but it bears thinking about. Your twisted ankle will heal and you will walk again. I may never have that joy.
My 12 year old son heard me crying last night and asked why. I am so very grateful that I have surviving children. I am very blessed, I know that. But I have also lost five babies. As Rick Boyer said in his book on large families, ‘Yes, they’re all ours’,
“which of your children would you not mind losing?”
My young son’s reaction was so insightful, he said “it must feel like they’re teasing you.” I hadn’t thought about it that way, but yes it does a little bit. I know that there is probably no malice involved – it’s just insensitivity. From their perspective, her need for support is more important than my inability to give it. But from my perspective, they are flaunting their joy in the face of my grief.
The difficulties of a pregnancy that leads to a live birth are very, very different from the difficulties of a pregnancy that leads to a loss. They cannot be compared.
And you cannot expect sympathy for your pregnancy (or breastfeeding, or child-raising) difficulties from mothers who would give anything to experience those difficulties again for the chance of holding – and keeping – their baby.
I am sad to have lost my friend. I am sure he will make a good father. I wish them well. But even if there was no animosity towards me, I wouldn’t be able to be around them anymore. I truly wish it were possible, I would have loved to share their joy; but it isn’t possible. It’s just too raw and too painful, and sadly that is the reality for babyloss mums.
It’s cruel, it is an additional loss and grief on top of the original loss and grief.
Please try to understand that, and be grown up enough not to ‘block’ and punish them with insensitive words when they don’t live up to your expectations.