Motherhood, mental illness and beyond

Archive for the ‘Spinal problems’ Category

My pain

Today I am angry, I am heartbroken and I am self-pitying. Why? Because after almost a year of bearable pain, the last couple of days have seen me once again reduced to sitting or lying very carefully, walking very slowly while leaning heavily on my stick and trying not to sneeze, cough, laugh or do anything else that will send lightning bolts of pain through my body.

The reason for this sudden degeneration is very simple; on Saturday I bathed the children. That’s it. Usually DH does bathtime because I struggle to but on Saturday I decided that for once I was going to have the fun of doing it. And now I’m paying for it.

This makes me so, so angry. After 18 years of gradually increasing back pain you’d think I’d be resigned to this but no. I want to play with my children properly, getting down on the floor to build farms and railway tracks and roll around with them. I want to be able to sweep them up into my arms without having to steel myself against the pain, I want to run around with them playing football and chase, I want to take them for rambles across the countryside. I want to do normal mum things, I want to live my life without the constantly nagging companion that is pain.

It’s not fair. I know I sound childish and petulant but I don’t care. I don’t want this any more. I have spent more than half my life in constant pain; I had been in pain for 8 years before I had my first MRI scan, it was another 9 before I had a proper diagnosis. I’ve tried osteopathy, acupuncture, all kinds of physiotherapy, pain management clinics, cranio-sacral therapy, experimental therapies, you name it I’ve tried it. Painkillers are either ineffectual or so strong that they make me vomit constantly. My husband and children have never seen me without the spectre of pain and I doubt they ever will.

I know that I am far more fortunate than many, that have much to be thankful for and I am, believe me. But right now none of that matters because I am in pain, emotional as well as the gut-wrenchingly physical. This pain has been wearing me down a little more every day for 18 years and I don’t want it any more.  I don’t want my husband to have to help me dress and get to the bathroom on days where I can barely move, I don’t want my children to have to be careful around me in case they hurt me. I don’t want it and right now I am so furious that I could just scream all this pain and heartache at the universe. Instead I’m typing these words through angry, frustrated tears because I know that there’s nothing I can do to change this. There are no practical treatment options at this time.

And I can’t even have a proper tantrum about it because stamping my foot would hurt too much.

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First steps

DH and I have been together for 12 years now, and for all bar the first few weeks we’ve known that we both wanted children. At least 2, preferably 3 or 4 or even more. We decided on our favourite names in 2003 (our eldest wasn’t born until 2009!). For over a decade the prospect of having a large, chaotic, loving and happy family has always been a part of our plans. But not any more. Today, as a 33 year old mother of 2, I asked my GP to refer me to the local hospital to discuss sterilisation.

This is something I’ve discussed with my husband and my mother and I think it’s the right decision. I hope it is. The reason is very simple – as much as I yearn for more children I know that another pregnancy, another child, could endanger my life. My mental health has deteriorated over the last few years. I have suffered with post-natal depression after the birth of both my children, each time severe enough to make me suicidal. During my second pregnancy I had ante-natal depression which, while not as severe as the PND, still meant I was barely functioning. I wasn’t able to care for my daughter (then just 2) properly, I wasn’t able to care for myself and I certainly wasn’t able to care for the child I was carrying. As recently as March this year I was in crisis and suicidal; although I’ve recovered from that and feel stable again there’s always the possibility of a recurrence.

In addition to this, my physical health is poor. I suffered from awful PGP (pelvic girdle pain) in both pregnancies – the first time this meant I needed crutches to walk, the second time I was barely able to move by the third trimester. There’s also my spine to consider, as I have degenerative disc disease. I’d previously been told that if I wanted children I should have them before I was 30; the last consultant I saw was even more blunt and told me that if I wanted to retain the ability to walk I would limit my family to the 2 children I already have.

I know that sterilisation is a huge step to take, but to me it seems the logical one. For all the reasons listed above, if I should accidentally conceive I would have to abort the pregnancy. And I honestly don’t know if I could do that. But having conceived my son while correctly using contraception, I have very little trust in the usual methods of birth control. While I know that sterilisation isn’t a guarantee, it has far better odds of successfully avoiding pregnancy than anything else. My husband, lovely man that he is, has offered to have a vasectomy so that I don’t have to undergo a fairly major operation. But that seems unfair, to me. I’m the problem here, I’m the reason we can’t have more children. If DH and I ever split up or if I died, I would like him to find someone else and have the option of having more children if he wanted to. So I’ve said no.

I know that there will be people reading this who can’t have children, and who are probably screaming at the screen that I should be thankful for what I have. And I am, I really truly am. I realise that my pain is in no way comparable to that of someone unable to conceive or carry a pregnancy to term. But knowing that I will never have another child is very painful for me and I refuse to pretend otherwise.

DH and I have always been keen on fostering and that may be an option for us later on, if our mental illnesses aren’t a barrier. But I will never bear another child and I need to come to terms with that, somehow. Last week I took the first step and disposed of all the baby clothes and everything that DS has outgrown. Today I took the second. I’m not sure what the next step is but I hope it leads to not just acceptance, but peace.

Look out pain, I’m coming to get you!

I’ve written about my chronic back pain before; here, here and here.

So after 17 years I had my first meeting with a spinal surgeon this morning. It was a really good meeting, he was lovely and very sympathetic and quite optimistic that finally something can be done. First of all we’re going to try a new, still fairly experimental treatment of antibiotics for 3 months (it was in the news earlier this week, there’s a good article about it here). The surgeon was very excited about trying it (I think I’m his guinea pig!) as it’s supposes to be pretty effective for chronic back pain.

If the antibiotics don’t help then I will be given intravertebral steroid injections (doesn’t that sound fun?). If my levels of pain and mobility still aren’t improving then the surgeon wants to do a double discectomy and spinal fusion (which sound even less fun!). But for now we’ll try the antibiotics and see if there’s any improvement.

I’m feeling more optimistic about my prospects than I have done in years. It’s good to know that there are options I can try and that if one thing doesn’t work it’s not the end of my treatment, merely a step on the path to something else.

My big fat problem

I was always a very active child – dashing all over the place, climbing trees, cycling, digging holes. I took numerous dance classes including ballet, jazz and contemporary modern. I was a Brownie and then a Girl Guide (as they were known then) and loved the camping, wide games and hikes. In my first couple of years at university I did a lot of extreme sports including skydiving, white water rafting and bungee jumps.

When I was 15 I started getting occasional twinges of pain in my lower back. By 17 I’d had to stop dancing. By 20 I needed to use crutches every now and again. At the age of 23 an MRI showed that I had 2 prolapsed discs in my lumbar spine. I was told that surgery was not an option so I tried all sorts of treatment, from painkillers and pain management clinics to various kinds of physiotherapy and acupuncture. Nothing helped and I was starting to gain weight.

It didn’t bother me too much. I was still fairly mobile and active and although my pain was constant I was able to ignore it most of the time. However as I got older my mobility decreased and my pain increased. By the time I was 26 the only exercise that didn’t exacerbate the pain was swimming and walking. So I did those; I swam twice a week, a mile each time, and walked whenever possible. Still my mobility gradually decreased though, and my girth increased.

I am now 32. I have been diagnosed with degenerative disc disorder; I still have 2 prolapsed discs but now my lumbar vertebrae are calcified as well. I use a walking stick most days or crutches if it’s really bad. And I am obese. Really, properly obese – about 5 stone over a healthy weight (according to BMI). I’m seeing a spinal surgeon next Friday and I know that one if the first things he’ll say is that I need to lose weight (as though anyone could be this fat and not realise!).

But how do you lose a large amount of weight when you can’t exercise? By eating less and eating healthily, of course. But (there always seems to be a but and I feel like I’m just making excuses) I can’t afford lovely healthy food and my mental illness is yet another hurdle. I comfort eat when I am stressed, unhappy, tired or in pain – so a lot. The psychiatrist who recently diagnosed me with cyclothymia and generalised anxiety disorder also said that I am a compulsive binge-eater. I merely nodded my head in agreement – I’ve been like this since childhood.

I know what I need to do. I need to stop bingeing, eat less and try my hardest to exercise when I can. And at night I lay awake plotting how to do this – I’ll only snack on fruit, I’ll eat mints when I get the urge to binge, I’ll stop baking with DD for a while, I’ll really cut down on portion sizes. Hopefully as I lose weight my pain may decrease, allowing me to exercise more.

But the next day I wake up and my first thought (after “Why is my 16 month old blowing raspberries on me at six in the morning?”) is always of food. I think about it all day. I think about what I want to eat, what we actually have to eat, whether I can bake anything today. While writing this I am mentally going through the kitchen cupboards to see if there’s anything I can snack on. I am obsessed with food and I have very little self-control. I know people who can open a packet of biscuits, eat one or two and put the remainder in the cupboard. I admire these people with something akin to awe. Because I can’t – I have one more, and one more, and one more, and then they’re gone. This applies to any junk food – sadly not to anything helpful like fruit!

I know what I need to do but I self-sabotage. You know the cartoons where someone has an angel on one shoulder and a demon on the other? That’s me. I am constantly torn between what I know I should, must and need to do, and what my treacherous bingeing self wants me to do.

I can’t carry on like this. I am in constant pain, I struggle to lift and play with my children, I can’t remember the last time I cuddled up to DH on the sofa because it just hurts too much. I don’t want to have this relationship with food any more but I don’t know how to change. I don’t know how to quell the demon and let the angel win for once. I don’t know how to not be this person.

But you don’t seem the type…

Friends are often surprised when I mention my mental health problems. To me it feels as though I’m walking around with a brand on my forehead, marking me as separate from all the ‘normal’ people. But others never seem to see me this way; typical responses include “But you’re so cheery!”, “I would never have guessed” and my personal favourite “But you don’t seem the type!”.

Then once it’s out in the open a lot of people never mention it again. Which is good in a way, because it hasn’t affected our relationship. But it also means that I don’t know what that person is thinking – whether they are comfortable around me still or whether they’re just going through the motions, waiting for me to  ‘go mental’.

In contrast to this are the reactions I get to my physical disability. I have degenerative disc disorder and frequently need to use a walking stick. I get a lot of sympathy and friendly interest from strangers as well as friends. No-one has ever told me that I “don’t seem the type” to have a physical condition, although as a woman in my thirties using a walking stick I do sometimes get odd looks. 🙂

So what’s the difference? Stigma, misconceptions and ignorance. One in four people will suffer a mental health problem at some point yet it is still taboo; people talk about mental illness in hushed tones and using euphemisms. Depression is often seen as a sign of weakness and thanks to misconceptions and inaccurate media portrayals many people are scared by illnesses like bipolar disorder or schizophrenia.

A physical injury or illness is usually more obvious than a mental illness and more easily understood. Because of the taboos surrounding mental illness quite often people don’t understand what it can be like. You can understand what it would be like to have a broken leg, right? Can you understand how it would be to have depression so badly that it’s impossible to get out of bed or speak to people?

Mental illness is often viewed as a sign of weakness, that if the sufferer merely pulled themselves together they would be fine. But no-one thinks this way about physical illnesses because it would be ridiculous. No-one tells a diabetic to stop taking insulin and yet people taking anti-depressants are often encouraged by friends and family to stop.

Is there a point to this rambling ranty post? Yes, a very simple one. If someone tells you that they or someone they know is suffering from a mental illness, please pause before you react. Think, would you react this way to news of a physical illness? Having a mental illness can be incredibly isolating and a lot of sufferers feel ashamed – together we can change that.

There are different kinds of pain

Tonight I am feeling both sad and angry. Earlier today my daughter asked me when my back will be better – because when you’re 3 everything gets better eventually, whether it’s a cold, chicken pox or a bumped head. I had to explain to her that my back won’t get better, that I will always have a sore back. “But I don’t want you to be sore any more Mummy!” she cried, and I had to comfort her and tell her that it’s ok, I don’t mind having a sore back.

But I do. Of course I do, no-one enjoys being in pain, let alone chronic 24 hour pain. Yes, the levels vary, and some days I am more mobile and flexible than others. But the pain is always there. Sometimes it’s a dull, nagging pain like a weight dragging me down; sometimes it’s a sharp stabbing pain like white hot lightning. Most days it’s a combination of the two although the intensity varies.

This pain has been a constant companion for almost 17 years now. It has worsened significantly during that time, as degenerative conditions do. And so now I find myself aged 32, with 2 small children, and decreasing mobility. And I am angry.

I feel angry every time I struggle to pick up my 1 year old son and every time I barely manage to pick up my 3 year old daughter. I feel angry every time I have to explain that I can’t get down on the floor to play today because my back is too sore. I feel angry when my husband has to help me up from the sofa or out of the bath; when I struggle to make my bed because the weight of the duvet is too much; when I have to explain to DD yet again that I can’t run with her.

And I feel incandescent with impotent rage every time I see her looking at me with concern in her eyes, every time she tells me that she’s sad I’m sore, every time she gets out her doctor’s kit “to make Mummy better”. She’s only 3 and already I’m letting her down, already she’s learning that her Mummy isn’t the super strong person she needs, that I can’t always be the Mummy she wants me to be, who crawls around the floor and runs outside with her.

Before I had children I thought that there couldn’t be anything that hurt more than my back does on its worst days. I was wrong – this pain in my heart is far harder to bear.

Pain, pain go away…

I first started suffering from back pain in my mid-teens. Initially it was mild and infrequent but it gradually worsened. I tried all kinds of therapies, medications, exercise regimes etc but nothing stopped the pain. Eventually at the age of 23 I was told that I would just have to put up with it, that it was a degenerative condition and I should expect to be using a wheelchair frequently by my early thirties. I was also told not to leave it too long before having children.

I’m now in my early thirties and I’m doing better than expected. I do have a wheelchair but use it very rarely – I use crutches more often but still only a small percentage of the time. Mostly I just hobble around as best I can and stay at home if it gets too bad. However I am in constant pain; if you count 1 as being pain-free and 10 as utter agony then most days I am a 6. Sometimes a 7. Only when my back goes completely (which thankfully doesn’t happen very often) does it reach 10. It still affects my every moment and every movement though. Over the years I’ve become quite good at gritting my teeth and hiding the pain but sometimes it’s impossible.

While there are only a few things that I am completely unable to do (run, dance, walk any real distance etc) the list of things that I can just about do but really shouldn’t (because they increase my pain) seems to grow longer and longer. At the moment it includes:
Picking up my children
Getting things in and out of the fridge/oven/lower cupboards
Sitting on the floor to play with my children
Carrying shopping
Lifting DS in and out of his cot
Walking on uneven ground, including beaches
Walking up or down hills
And so on and so forth.

I refuse to stop playing with and caring for my children. I am very lucky to have a wonderful and supportive husband but I refuse to let him do everything at home. I want to carry on doing all these things right up until I am no longer physically able to. This often exasperates DH. 🙂

Why am I talking about this today? It’s because I saw my consultant this morning and after reviewing my latest MRI he confirmed the diagnosis of degenerative disc disease (I won’t bore you with the specific details). He’s referring me to a surgeon to discuss the possibility of spinal fusion or a discectomy but he’s not optimistic that either procedure will help. Once again I am forced to acknowledge the possibility that I will have worsening chronic pain (and increasingly restricted mobility) for the rest of my life. Every day for another 50, 60, maybe even 70 years.

And worse than that, my ability to play properly with my children is decreasing all the time. There is nothing worse than having to tell your 3 year old that you can’t play with her because you’re too sore. Actually wait, there is – it’s when she doesn’t even ask me to play, but tells me to rest and look after my sore back instead. That hurts most of all.

But I have recently become friends with someone in a similar position and she gives me the anger and fire to fight this instead of merely resigning myself to it. If surgery isn’t an option then I’ll bloody well find something that is. I refuse to just give up. I will beat this.

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