27 August 2014

Parenthood and M.E.: A Difficult Combination

I first realised how much I really wanted to be a mum when the doctor sat on my hospital bed, told me what they'd found in the gynae surgery I'd had the day before, and gently imparted the news that I was highly unlikely to ever conceive, and if I did, there was a high risk of me having an ectopic pregnancy. I howled. Right then and there, in front of this poor kind doctor and with only a thin curtain between myself and the other patients on the ward, the bottom dropped out of my world and I howled and sobbed my heart out.

Prior to this, I would've told you that I wasn't bothered one way or the other, that if motherhood happened for me, well, great; but if not then that was ok too. And I would've honestly believed that. Looking back, however, I realise that I was able to have this 'wait and see, don't mind either way' attitude purely because, deep down, I just assumed it *would* happen for me.

The gynae surgery I'd just had that dark day wasn't the first - it was my third, I think - and it wasn't the last. I had several more surgeries, for various different complex gynae problems. For years the emotional devastation of infertility was a huge issue for me. I went through a period of extreme unimaginably severe chronic pain, due to adhesions (scar tissue) from the surgeries literally knitting my abdominal organs together; it caused huge disability and leaving my bed was challenging enough, let alone leaving the house. I was prescribed extremely strong (stronger than morphine) painkillers, but they barely took the edge off, and I had to be careful every time I ate, moved, and breathed (literally) to try not to exacerbate the pain even further because it made me go out of my mind. It was a horrific dark time, and depression was impossible to avoid. Still, though, despite the horror of extreme pain, one of the main over-riding emotional issues was the infertility. It was an enormous and devastating thing to try to come to terms with.

Why am I telling you this? Because I want you to know that I don't take the issue of motherhood lightly. It is not something I can be flippant about. If you are someone who has ME, and you are considering becoming a parent, this post may not make easy reading, so I want you to know from the start that I am not dismissive of the desire/need to become a parent and the impact that can have on your life, and I am not for one second forgetting how hugely and incredibly blessed my husband and I are to have our daughter.

Another important point to make at the start is that you and I are different people. Yes, I know that's a pretty obvious statement, but what I mean is that all this post is, is my story; just because I have had certain experiences and difficulties doesn't mean things will be the same for you. I would not dream of telling you what you should do, or what decisions are right for your life. I would urge you to listen to my story and consider the issues I raise, but I certainly don't have all (or any!) of the answers; it's a complex subject, and only you can make decisions for your life.

OK. Fast forward several years. Complicated surgery (I have a DVD of the op to prove it...!!) by a national gynae expert surgeon had freed up the adhesions and given me my life back, and I was a new (pain free!) person. Oh, I had the occasional twinge, and my other gynae issues still rumbled on in the background, but I could LIVE. I was able to go back to work full time. Conception was still highly unlikely due to the state of my inside bits, and I still had deep emotional issues about that, but otherwise I had a normal busy life. (It is impossible to describe the joy of being given your life back after living an existence imprisoned and consumed by pain with no hope of parole! I am very, very blessed.)

And then, in 2010, the miraculous happened: I conceived. Don't ask me how, because I don't know. (OK, clarification needed. I know *how*, I was there...!!! I just don't now how it was possible, given my complicated messed up insides. It was a fairly frequent occurrence during my pregnancy for an obstetrician to look through my notes and be utterly amazed and mystified that I was pregnant. Miraculous is the only appropriate word.)

Our twelve week scan

It was a tough pregnancy. Those adhesions, although they'd been freed up, were still there, and the pregnancy caused them to stretch which was beyond agonising. I had no choice but to go back on the stronger-than-morphine painkillers, because the specialists said they presented less risk to my baby than the level of stress I was under from the pain. After weeks of urging by the pain specialist and the obstetrician, I finally caved in to being signed off work sick at 20 weeks, halfway through the pregnancy. The rest of the pregnancy was - well, 'not pleasant' would be a humongous understatement. But they closely monitored both me and my baby throughout, including over twenty ultrasound scans, and the most important thing to me was that the baby was fine.

And then, in January 2011, our beautiful daughter was born. We chose a name for her which means 'my God has answered', because after so many years of gynae problems, pain, and infertility, she was a truly miraculous answer to many many prayers. And as soon as she was born, the adhesion pain went, and I could live again and fully enjoy having a newborn, exhausting and incessant though it was. I love her more deeply than I could express, and not a day goes by when I'm not thankful for her.

But. But. But. Sometime later in 2011 I got a nasty virus, and from there I developed ME. I had to leave work in 2012, although we did not at that time know what was wrong, why I had so many bizarre and horrible physical and cognitive symptoms, or why I wasn't coping. I spent most of 2012 pushing myself and vastly overdoing things: looking after my daughter, helping friends who were going through a tough time, setting up a business from home, and forcing myself to walk for miles through tears of pain (because exercise is good for your health, right?!), interspersed with huge physical crises. Looking back, with the hindsight and knowledge of the ME diagnosis, it all makes sense; I was permanently running on adrenaline and in a classic ME cycle of boom/bust which was dangerous and very damaging to my health. Back then, though, I didn't understand it at all. I had numerous medical tests but the doctors were still mystified; finally, in February (I think) 2013, I was diagnosed with ME. Then in March 2013 I caught a nasty flu bug, which caused a dramatic downturn in the ME from which I never recovered; in fact, I have steadily deteriorated since then. By October 2013 I was almost totally housebound. A number of stressful and emotional events that Autumn and Winter took a physical toll too. In February 2014, a bad reaction to some neuropathic pain meds (which I had been able to tolerate for the adhesions pre-ME) caused another dramatic downturn in my ME; I have only managed about four trips downstairs since then, and none at all for almost five months now. I need daily carers for all aspects of my personal care, and I need huge amounts of help to provide even basic care for my daughter and to keep her living with us.

This was NOT what I had planned, hoped and dreamed for her childhood.

So, what's it like to have a child when you have ME? It's an incredibly tough, heart-breaking, joyful, guilt-ridden, painful, beautiful thing. It's a big ol' jumble of positives and negatives that I find impossible to untangle and get perspective on. If pressed, would I advise anyone to have a child if they have ME? Honestly, given the severity of my ME: no. Would I have tried to get pregnant if I'd known I was going to get ME and how hugely that was going to impact our lives? No. And yet, and yet.... she brings me incredible joy. She makes me smile (at least inwardly) on even the most difficult, agonising, and paralysed of days. She gives me a focus, a reason to look to the future, a reason to keep going. And, as someone who loves doing things and finds it very hard to say 'no' to people and activities/opportunities, even if I knew that doing that thing would be too much and damaging to me (when I was able to be more active), she helped me keep my priorities straight. I'm not good at saying 'no' to things for my own sake, but I have no problem saying 'no' to things if they will negatively impact on my daughter and/or on my ability to be her mum. Having her helps me to say 'no' to the tempting stuff that I shouldn't do, so that I will be more able to participate to some extent in the more meaningful important stuff like her bedtime, or having a cuddle with her, or just being able to have her keep living with us. Without her, I may well be less severely ill as I wouldn't be constantly having to do more for her than my body could cope with. However, I still think I would have deteriorated a lot due to not having her as a focus and priority to make me say 'no' to less important stuff.

Do I regret having her? Not in a million billion years. She is a HUGELY wonderful blessing.

Being a parent is incredibly tough, even for the healthiest of people. It is far more exhausting, incessant, heart-breaking and guilt-inducing than you can ever imagine before you have a child. It's also even more amazing, awe-inspiring, rewarding and beautiful than you can imagine before having a child.

Adding ME into the mix is unbelievably hard, for everyone involved. My husband is stretched to absolute breaking point by all he has to do for our daughter and me. He loves us both so much and is a wonderful husband and daddy, but he is exhausted and is struggling to cope.

For our family and friends, they have to do far more for us than usual which is an added burden on them. My parents, in particular, despite living a couple of hours away, have had to rescue us on several occasions, and they support us by phone on an almost daily basis, helping me problem-solve and make decisions, reminding me how to do things, helping me work out how to maintain consistent discipline, etc etc etc.

For me, I have the guilt of not being able to care for my daughter, and the grief of missing out on things like watching her play, taking her to the beach, going on bug hunts, making footprint paintings, baking cakes, and a million other things I so desperately want to do with and for her. Then there's the physical exhaustion when you seriously need to rest but she needs her nappy changed or wants to show you that she's found something with the letter 'b' on it or whatever; or trying to potty train her when bending down to pick up the potty, let alone clean it up, is excruciating. (Fortunately my parents kindly got us over the worst of the potty training hurdle, but it was still very tough going.) Or when you've got sleep reversal and it's 5am and you're finally dropping off to sleep but just then she wakes up crying and only a mummy cuddle will do. Or when she's got out of bed for the umpteenth time that evening and your brain won't work so you just can't remember what you'd warned her would happen if she didn't stay in bed.  Or when she wakes too early from her afternoon sleep and Daddy isn't home yet so you have to put on cbeebies on the TV to occupy her but every tiny noise is like a pneumatic drill hammering into your skull. Or when she snuggles up to you for a cuddle, which you desperately want, but you cannot stop yourself screaming in pain when her head touches your arm.

I would do anything in my power for my daughter, but my body just will not cooperate. It's heart breaking.

There was a day about 8 months ago, when I was still able to get downstairs most days. It had been 'one of those days'; due to circumstances outside of my control, I hadn't been able to rest sufficiently, and by early evening I was feeling pretty rough. Andy, my husband, brought my tea into the lounge as I couldn't make it to the kitchen. I never managed to eat that meal. Whilst he and our daughter ate in the kitchen, I gradually became paralysed. I couldn't even open my eyes, and I was in excruciating pain. I think my husband was alerted by the ringing of a medication reminder on my phone as I was unable to cancel it despite the agony of the sound. My husband is a lovely, wonderful, talented man, but the practical aspect of caring is not one of his strong points, and I could not speak so I couldn't tell him what I needed him to do. He stood there, deeply upset because he knew I was in extreme suffering but he had no idea what to do, while at the same time trying to comfort our daughter and explain to her what was happening so she wouldn't be frightened. It was a desperate time for us all.

And then I heard her sweet little voice calmly say, "Do you think Mummy would like a cuddle?" And this beautiful precious child, who was then not yet three years old but is insightful beyond her years, climbed up and gave me a gentle cuddle. It was painful for me physically, but it was the best medicine anyone could have given me at that moment.

I have tears streaming down my face as I type this. I HATE, with every fibre of my being, that she had to see me like that, but I will never forget her gentle love and kindness that day and on so many other days. I worry and feel deeply guilty about the emotional impact of my illness on her, but I am so grateful for the love and joy and cuddles she gives me, and I am truly blessed to have her.

We have a huge amount of support with looking after her, from family, friends, and our wonderful church family. She goes to an amazing pre-school and they are hugely supportive to us, too. Once a month she goes to stay with either my parents or my sister to give my husband and me a week's break. And everyone involved keeps a close eye on her, especially my Mum, my sister, and her pre-school keyworker. Everyone says she's doing fine, she's extremely well emotionally adjusted, and she's developing and learning very well. She gets upset sometimes - well, it's more that she doesn't understand, for example why mummy can't go down the stairs anymore. But she seems to love it that I have carers to help me, and she gets excited about things that assist me, like my wheelchair and the prospect of a stairlift. She really does seem to be coping fine with everything.

I don't think I'll ever stop feeling fearful, guilty, or worried about her though. She shouldn't have to live like this. She deserves a mummy with a working body and brain. She deserves far, far better. I would give her the whole world if I could, but some days I can't even give her a cuddle.

There is hope in sight: we are hoping to get a much bigger care package from social services to care for my daughter's needs as well as mine. Hopefully this will help my health to stabilise a bit so we can have more fun mummy-daughter times. And hopefully the carer will be able to shield my daughter from seeing the worst of my pain, paralysis, muscle spasms etc.


So, if you have ME, should you have a child? I can't answer that. And I wouldn't dream of telling you what is best for your life, even if I thought I knew. The aim of this post is *NOT* to dissuade you from having a child, but just to show you the sorts of issues I've had so that you can make a more informed decision and think ahead about the type of support you might need as a parent with ME. It's so easy to have rose-tinted glasses when looking forward to the idea of parenthood. It's easy to get caught up in the dreams of cosy snuggles and first giggles and sweet baby powder smells. Even for healthy parents it's often huge shock to be confronted by the reality of life with a baby. Somehow no-one dreams about the charms of an exploding pooey nappy or endless sleep deprivation or infected nipples or chickenpox (don't ask!). So I just wanted to give you an idea of what it's like to be a parent with ME.

(Just be glad I chose this image not one of an exploding pooey nappy!)

Everyone is different, and there are different severity levels of ME. Some people may not have as much of a struggle. Some women with ME may experience improvement of symptoms during pregnancy (see http://www.hhhummingbirds.com/nutrition-in-pregnancy; scroll to the bottom of the page for information specifically about ME and pregnancy). Some people may be fortunate and not have their ME impacted so negatively by the exhaustion of parenthood; some may find their ME gets dramatically more severe. Maybe it would be different if you already had ME prior to becoming a parent, as you'd hopefully already have coping strategies such as pacing in place. I don't know. (I am planning another post about tips/strategies I've found helpful for parenting with ME.)

Being a parent is the most amazing, hard, beautiful, exhausting, wonderful, devastating, rewarding experience in the world, and ME intensifies all of it. If you have ME and are considering trying to become a parent, I hope this post has helped you to consider some of the extra challenges and issues you may face and what extra support you may need.

Best wishes.


I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Pamela M.B. Scully. said...

I also have moderate to severe ME & I have 3 children in their 20's, it is hard to bring up children when you are ill but don't feel guilty about the things you cannot do for your daughter, as this makes your health deteriate, children need to feel that they are much loved & then they can take anything in their stride, you do that & your daughter feels your love, you are amazing!

Rachel said...

Thank you so much for your comment and encouragement, Pamela, it means a lot! I'm really sorry I missed it when you posted it; I have no idea how that happened! But please know that I really appreciate you taking the time to comment :-) Three children, wow, that's a handful! Best wishes :-)

Rachel said...

Thank you so much for your comment and encouragement, Pamela, it means a lot! I'm really sorry I missed it when you posted it; I have no idea how that happened! But please know that I really appreciate you taking the time to comment :-) Three children, wow, that's a handful! Best wishes :-)