Sick with grief

No one ever told me that my grief would make me feel so ill.

As they broke the news to us that Abi was going to die, I thought of only her, then our family… and everything about how we’d live without her.

I was prepared – and expected – to feel depressed, but the physical symptoms that gradually took hold were more of a shock.

I shared this link about how grief affects us physically on my Facebook page, and wasn’t too surprised to find many of you have felt similar symptoms – some debilitating, some mild, but all as a result of the grief. These symptoms, however, are mostly during the early weeks and months after the loss. I didn’t really notice anything until about a year after and they got worse…

I developed a weird thing with my heart – in that I have noticeable ectopic beats and a type of tachycardia that causes palpitations. (Part of me thinks I am so aware of my body now that I’m conscious of my heartbeats, I probably wouldn’t have  noticed this a few years ago.) It’s not bad enough to have me on medication, but it is bad enough to make me anxious to the point where I’ve been scared to go out or be alone. It has greatly improved now I’ve lost some weight, am more active and eating better, and I think was made worse by the pregnancies, but while I’m now able to function again, I’m nervous (make that terrified) about exercising. I’m scared that raising my heart rate will trigger palpations, and then a heart attack. It’s so bad that I almost have a panic attack just thinking about it. There are countless stories of people dropping dead when running or exercising, usually fit and healthy people, and this only adds to my worries and my excuses not to do anything. 

But I’m so tired of being scared. I’m so tired of saying to the children ‘be careful’, or of saying to myself ‘you’d better not’. Of living in fear. I ran half marathons and 10ks with relative ease before Abi died, I got such a buzz from being fit! But every one of my symptoms – however real they were (as they were genuine medical things, not ‘imagined’) – have been brought on by grief. 

It’s commonly believed in the medical profession that 90% of illness is caused by stress, and grief is just a form of stress. I didn’t take myself to the doctor at the slightest thing before Abi died. I didn’t worry about exercise or food. I didn’t worry that putting butter on my toast would kill me, or that if I ran I might keel over…  I miss that me, the me that worried about obvious stuff but didn’t let it stop me.
But I still have a bit of that old me left. The me that refuses to quit. The devil is telling me to stay down, God is telling me to get back up!

In January, I wrote this post about easing myself back into exercise, by going for gentle walks and getting outdoors more. Doing this, when I can and when my mind allows me, has been beneficial.

So I have taken the next step and started looking into exercise, raising my heart rate. I signed up for a local netball group but I was too scared to put pressure on myself, so I went out for a run. At least on a run if I wanted to stop and go home I could. After months of procrastination, talking myself out of it, crying, fear, anxiety, another bar of chocolate, I put my trainers on and went.

It felt good. I ran for 15 minutes and didn’t collapse or struggle. I went at a gentle pace but was surprised how good it felt to be back out and having that mental space while my body felt energized. It’s a far cry from the hours of running I was capable of before Abi died, but I have a new agenda now. To build up my confidence to enjoy exercise for what it is, not what it might do to me. We’re all going to die, so I may as well live!

I don’t know if I’ll do another run. I might, I don’t want to put this out there and feel I have to now commit to it, but it’s a start.

It’s all about putting one foot in front of the other.

Fight or flight – coping with illness as a bereaved family

My personal anxiety is much better these days although I’m still on a minute dose of anti-anxiety drugs just to help me through the first months of having a newborn should it suddenly increase with my hormone surges. It seemed sensible to do this, keeping any risks to baby to a minimum but allowing me the scope to get a bit of extra support if I need it.

Pregnancy and the birth of a new baby are always exciting and a reason to celebrate. A rainbow baby is an absolute blessing, there’s no question about that. The rainbow baby is treasured in a way deeper than another child. Not loved more I should add, but the joy of that child’s life is remembered by the parents and family as it reminds them of joy and hope after the most painful loss, or losses, imaginable.

But the joy is a double-edged sword as post-traumatic anxiety always threatens to spoil the fun!

The very fact I have already lost a much-loved child and much-wanted pregnancies puts me in an anxious state of mind, fearing having to go through that kind of loss again. Not fearing about them breaking a leg, or falling over, but fearing they will simply not be here anymore.

It’s an odd and unsettling feeling. It’s not the same as general parental anxiety. It’s not the same as an overprotective mother who might stop her child from climbing a tree or going out to play for fear they might get hurt, it’s not saying ‘be careful’ for the umpteenth time that day, it’s a deep unnerving knowing that at any time they could be gone. Forever.

We try hard not to overly protect our other children. We let them play out, we encourage some independence, we encourage bravery and trying new experiences even when they feel anxious themselves (and all we want to do is wrap them up, close the curtains to the ‘nasty’ world and stay home). We know we have to do this, to enable them to live as full lives as possible.

When worrying turns into anxiety
Anxiety is always there for us. The anxiety switch is ready to turn on at any moment. We can go from normality to are they/we really OK in an instant. Will this common illness turn into something traumatic? Will they wake up this morning? The anxiety surrounds sudden loss, which is understandable considering Abi’s sudden death from a brain haemorrhage. The anxiety is the fear of life changing in the blink of an eye.

The ‘fight or flight’ reaction, commonly known as something we have inherited from our ancestors to save us from harm, is still very real for the anxious grieving parent. At times of pressure, I found I have conflicting thoughts – one part of me says ‘Ignore it’ or even ‘Run! You’d be better off alone than worrying about this’, another part says ‘Don’t mess about, get them to a doctor’ and ‘Let’s fret about everything bad that can go wrong’. It can be very hard to think clearly.

We’ve had some nasty seasonal illnesses (which added to the worries of my son’s illness earlier in the year). Things I could handle pretty well in the past, but now I have to work overtime just to keep myself from going over the edge with worry, especially knowing with children how hard it is to read the signs sometimes, how one illness can mask another. It’s more exhausting than ever to know what to do for the best. With our NHS system on overload, we are conscious not to clog up busy waiting rooms with things that we can treat at home, yet invariably we’ll find ourselves taking them down, just in case (I try to avoid using Google to diagnose us seeing as every symptom seems to relate to something terminal or life-threatening!).

What are the chances…?
Life has become a game of chance. Abi’s illness was one of those ‘million to one’ scenarios, so it’s hard to say now ‘the changes are slim’ when we’ve been one of those million.

The other night, my son sat in the car and simply said, from seemingly nowhere, with tears in his eyes, “When did I last see Abi alive?” He has been talking about her a lot lately. I said it would have been the day she had her brain haemorrhage.

“Brain haemorrhages are really rare aren’t they, Mum? So why did Abi have to get it?”

I admitted I didn’t know why and that I often think the same. Why her? She was our daughter, their sister! Like us, he misses her. He knows it is very unlikely he’d get it too, he knows it was Abi’s ‘thing’, but being exposed to death at such close range so young makes the fear of death very real for us all. We think about death more often than most. And, after the viruses have passed, the post-illness anxiety lingers much longer.

 

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“I still miss her.”

Our children are most vulnerable to anxiety as their perception of the world changes, we already have their fears to ease, let alone the fear that death may come to them again at any time. Of course it will, because, like it or not, death is the most certain thing in life, but I am sad for them already knowing we will have to face loss again some day.

Faith in God has been vital to our comfort and it’s not to be underestimated. My children are always asking about heaven, Jesus and how it all fits together. Yet we also have to do what Jesus said, live life like a believing child, not a cynical, bitter adult. Be honest about our feelings, when we feel sad in grief, happy, adventurous, scared…

For example, literally minutes after having an emotional but straight forward chat about missing Abi, my son was building a pretend toilet out of his two-year-old brother’s bricks and laughing at his idea. It’s not to say his feelings about Abi were insignificant or made him feel uncomfortable, far from it. He said what was on his mind, it moved him, he processed it and then moved on to the next thing.

I admit that I struggle to be the same. As I watched him play with the bricks for a while my mind was still deep in our conversation. I wanted to hear more. I wanted to help him talk it through… but he’s done that, for now it was enough for him. He didn’t need to wallow or grieve. He didn’t need to be clung tight and watched. He just needed to express his fears and emotions.

He worries about death a lot, which is normal for his age, and I’m more ready than ever to answer his questions. I also admit that I don’t have all the answers, but one thing I do try to tell him is that worrying about death will not change the fact that we will die, and that even though everybody worries a bit about dying, we need to work hard to try to enjoy the days that we have and make the most of our lives rather than allowing the worries to control us. It’s harder than it seems when you’ve seen death like we have.

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The siblings as they were. Abi united them.

As I reach the last few weeks of my pregnancy, when I hope to welcome another daughter into the world, my mind is filled with excitement, fear and worry. Aside from the usual worries that most mothers have about the birth and if baby will be okay, I am thinking about the long-term pressure of life. This will be another person we, essentially, have to keep alive, another person to worry about, another person who relies solely on us to keep her safe and well. At times, it seems such a huge responsibility! A lifetime of worry!

Despite all this, I feel, as a family, we are doing pretty well. We are laughing and living as best we can, and there isn’t much to be done about these anxieties, they are part of our grief now, and I hope that it reduces as time passes. But I really wanted to record the mixed emotions that arise every time the ‘panic button’ is pushed. I’m sure I’m not alone!

Here’s to, hopefully, a healthier spring and summer!