Health

Posts about my own mental and physical health.

2 Comments

He has started school, embarking on his own journey through life. Of course his journey started over four years ago, when he first entered this world as a brand new, tiny human being. Back then he was so utterly dependent on me, to do everything for him, from feeding him, washing him, dressing him. I could lie him down somewhere and turn my back for a few seconds, knowing he would stay put, such was his inability to do anything for himself except breathe.

Now four years and four months have passed and he has started school. Proper primary school, with teachers and a uniform and term dates and inset days and homework and god forbid you take him out for a day during the week or else the government will fine you £120 for the pleasure. He cries about going each night and each morning and he drags his feet on the way.

There is writing practise to be done each morning in the classroom. In a class of however many children (25 maybe 30? I don't know) and then their parents and the teachers too. I find it claustrophobic and chaotic and distracting so I am not entirely sure just how much my four-year old gets out of. And if you don't fancy writing what about reading? He can recite the two books back to me but he isn't actually reading, he has memorised them, he doesn't look at the words or the pictures but the distractions in the room. Should I change the book now? Am I doing this right? Am I doing anything right any more and more to the point have I ever got it right until now? Should I tell the teachers that my son isn't getting anything from these 15 minutes each morning, other than delaying the inevitable that I have to leave him behind.

Then he sees his friend and decides that actually it is OK for me to go now, he will be OK now his friend his here. I sense he is still hesitant but take it as my cue to leave.

On picking him up, I question him like he is a terror suspect, asking him all the questions. "Who did you play with?", "What did you play?", "What did you eat at lunch time?" Some times he answers them, other times he doesn't. Every day he asks me why does he have to go to school again tomorrow "because Mummy it's a long time not seeing you and I miss you". It takes everything I have to not let the tears flow. "And I miss you too dude but if you want to be a fireman when you are bigger you have to go to school first".

The husband is working now too. Out of the house from 7 am until 3.30 pm. Leaving me alone to get Harry to school and pick him up, to manage the household, the chores, the shopping, the bills, the appointments, meals and everything else all by myself like a proper grown up for the first time in over two years. And in that two years so much has changed and I think I have forgotten how to run a house and now I have school-aged child and all the school stuff.

So many changes I feel left behind like the world is moving without me. Then a parcel arrives.

Open Uni pic

So I am changing too. Studying and trying to figure out what I want to do with my life.

All of this change is scary and exciting at the same time and I wonder, can I cope? I thought that now was the time to start studying after years of wanting to and never biting the bullet and now I wonder if I have made the right decision. So overwhelmed am I by my son going off to school and the husband working again and having all this stuff to do and trying to manage my emotions. I wanted to speak to my GP next week about weaning off my medication but all of this change has overwhelmed me and now I wonder if I should? Until two weeks ago I felt ready to have that conversation and I still want to but is that more because I just want to stop taking these tablets and to start feeling or is it because I actually am ready?

Next week sees another appointment with my Neurosurgeon, one that I will have to attend alone because the husband will be working and we can't afford for him to lose a day's wage to hold my hand. I have no idea what, if anything will happen. I am still in pain all day, every day. Some days worse than others but I get flustered and anxious and lose track of what I need to say, only remembering after the appointment and will anything I say make any difference?

Mind in overdrive. Change all around me. I can't keep up and feel lost but I don't want to feel lost. I want to feel normal. For once, I just want to feel normal.

16 Comments

The grey has descended once more.

I thought I had it sorted, I thought I had fixed it. Just a couple of days ago I asked my GP if I could start weaning off my citalopram. I thought it was a good idea. He disagreed and now it seems with good reason.

Just a couple of days ago I thought I was coping with all that life has to throw at me. I was content with my little family, plodding along.

I was feeling better mentally and physically, settled.

Alas, it was not to last. Slowly but surely the black dog returned, along with his good friends that are the grey clouds and rain showers.

I should have known really, it never does. I should have been forewarned but I was not.

The sensible, more aware part of me tells me that low points are normal, that everyone has them. Another part of me answers back, arguing that I am too weak to handle them. It is just life.

I’ve spent most of my adult life being medicated. The last time I wasn’t medicated was during pregnancy and a short period post-partum. Before that, I cannot recall the last time I wasn’t popping one anti-depressant or another.

There have been very short periods, a week or so when I have stopped myself. Those periods never end well and I know I want to avoid that.

But how am I to know if what I feel is part and parcel of normality? How can I differentiate between that and actual depression? I don’t know any more.

The wine aisle in the local shop whispers my name. Asking me “What harm will one glass do?” but I know the answer to that. I can’t have just one glass. I can’t have enough. So I avoid it, remind myself that alcohol and happy pills and pain killers and beta blockers do not mix. So I pick up the chocolate instead, slightly recoiling at the price; when did that get so expensive?!

I snap at my beautiful, happy son for no reason other than he is being a four year old boy, one who is fiercely testing how much independence he can have and is curious about the growing world around him. The same little boy who crawls into my bed in the early hours, whispering he can’t get back to sleep because all he wants is a cuddle from mummy, reminding me he is still my baby.

I know what it is like to be on the peripheral of life, to not want to be here, to feel life is pointless and I know I am not there, yet.

I don’t know, or perhaps just can’t remember life before the happy pills were dished out, why I started taking them in the first place. I can’t seem to reach the depths of my memory that are needed to recall that. Perhaps I don’t really want to. Or maybe there was no real reason at all. Maybe I am just unable to cope with real life.

15 Comments

The low tone, barely a whisper “Mummy, cuddle me” wakes me from my sleep. I cuddle him like a submissive servant obeying her master. The rush of love brings me to life, reminding me of the reason for my existence. I slowly come to, trying to work out how I feel this morning as I reach for my phone to find out the time. Light streams through the gap in the curtains as I realise that, for now at least, I feel content and excited for what today might bring. Today Lady Anxiety and her good friend Sir Depression have stayed away. The black dog has not paid a visit and relief surrounds me as I smile to myself.

Not every day is like this. There are many times, probably half if not more, when my body feels heavy with dread and doom. When I realise I will need to rely on the husband’s gentle tones of encouragement to even get washed and dressed. The days when it will be up to him to meet Harry’s requests for a trip to the park, an ice-cream for the corner shop, a kick about in the field. When even meeting his basic need for fuel feels like a task as challenging as climbing Everest. The days I fail as a Mummy to the most wonderful son.

It’s not because I don’t want to. I want more than anything to be able to take him out every day. To be able to watch his face light up in wonder at new discoveries. To hear the excited cry when he spots an aeroplane high in the sky, leaving white streaks across the cornflower blue sky “Look! It’s a space rocket going to the moon!” But wanting isn't enough.

I don’t want to miss hearing him asking all the questions in chatter that only a small child can. “Why is the grass green? Where has the blossom gone? Dogs should wear nappies, then they wouldn’t leave poo. Why don’t they wear nappies? What is that man doing? Why is that baby crying? Where is the lady going? Why can’t I walk on this road, look there are no cars? Why can’t we just take that car when no one else is using it? Can we go to the seaside now? Now, now, now?” Barely stopping to take a breath such is the exciting journey of discovery he is on. I don’t want to miss them but sometimes I do. Sometimes the fog is too heavy to shift, the sadness too great to push away.

Having anxiety or depression isn’t as simple as feeling a bit anxious or a bit down. It’s feeling like a heavy fog is hanging over you, weighing you down. It’s feeling sick at the thought of the short walk to nursery and back. It’s trembling when you are home alone and the doorbell goes or the telephone rings unexpectedly. It’s feeling sad when you know you have everything you wanted; a warm home, a beautiful and happy child, an incredible husband and the best family and yet something is missing, something you know money can’t buy. It’s going to bed each night and not knowing if you will sleep or how you feel in the morning. It’s turning down social occasions because you can’t leave the flat without your husband by your side. It’s thinking everyone is laughing at you, judging you. It’s feeling tired but unable to sit still, feeling agitated yet unable to function.

It’s Mental Health Awareness Week from 12-18 May 2014. This year the focus is on anxiety. You can find out more here.

13 Comments

Monday was the follow-up consultation from my operation that I had back in December.

I was feeling confident. The signs have been good. I have had fewer what I call "brain fog" episodes, far fewer headaches and just a few migraines rather than one approximately every fortnight.

So, when I got the official news that my cerebrospinal fluid was now flowing correctly and the ventricles in my brain were no longer swollen, it was no real surprise but pleasant all the same. Having the confirmation that the operation was a success meant I briefly got my hopes up that I could go on to have my chiari malformation and syringomyelia treated.

It was but a brief hope.

It seems that the operation I had before Christmas had a better outcome than anticipated. The length of the syrinx in my spinal cord has reduced. It's a small reduction but a reduction all the same.

Previously my neurosurgeon had been fairly adamant that I would need to undergo high-risk, long recovery surgery called posterior fossa decompression. This is not a cure, there is no cure, merely surgery to prevent the condition worsening. For now though, this on hold, with a view for more MRI scans in four months to see if it has improved further. As unlikely as this is, it is a possibility and given how complicated the surgery is combined with it not being needed immediately, it's probably worth doing, no matter how frustrated I feel at the prospect of yet more waiting.

In the meantime, I returned to my GP this morning. I am being weaned off the drug for my headaches and migraines since the original surgery was such a success and have been given amitriptyline to take before bed with a view to help me have a more comfortable night's sleep and ease the pain a little more. I am also succumbing to my body and have decided to order a cane when I next get some money. I worry about what people will think of a young woman with a cane but also think it will be a good thing to have a visual sign of my disability; I know people who walk behind me get frustrated if I am holding them up.

Life seems to have reverted to a state of feeling in limbo once more. Of waiting and hoping and holding on to the positive outcome that I have already had.

15 Comments

I thought it may be helpful to try to explain the illnesses that I have and the treatments that I am hoping to have.  This is in no way intended to be a "woe is me" as I do know there are many people who are far more ill than myself.  However, I thought I would quite like to use my own, tiny corner of the blogsphere to raise awareness and give some information.

This post has taken some time to put together as I wanted it to be medically correct, rather than simply my own experiences.

Chiari Malformation

This is a fairly rare illness, probably the least well known one that I have and what has caused the other two.

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.

CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.

Chiari picture 2There are several different types of Chiari and I am not entirely sure which one I have.  I was initially told I had Type I because it is the only type where you don't become symptomatic until adolescence or adult-hood, if ever.  My current Neurosurgeon stated in his most recent letter that I have Type II, so I don't know.  Symptoms include dizziness, insomnia, depression, hearing loss, migraines, headaches made worse by coughing, sneezing or straining and balance issues.  I have each of these and have done ever since my early teens, although my hearing loss is from birth.  Whether that is related to Chiari or to my traumatic arrival into this world we don't know and are unlikely to ever know.

There is no cure for Chiari.  The best we can hope for is quite major decompression surgery which involves removing a part of my skull to make more room.  Recovery from this can take anything from a few weeks to several months or even a year or more.  This is not a cure, it is merely to prevent symptoms worsening, possibly ease the current ones and to prevent paralysis.  There is even a risk of paralysis or death in having the surgery.  However, given the rate my symptoms are progressing and the inevitability of ending up in a wheelchair, I feel it is a risk worth taking.  I can hope the surgery will ease my symptoms but this is only a 50/50 chance.

Hydrocephalus

The term hydrocephalus comes from two Greek words.  "Hydro" meaning "water" and "cephalus" which means head.  It used to be referred to as "water on the brain".  My hydrocephalus is thought to have been caused by the Chiari.  This is because that has caused a blockage which prevents the flow of CSF to the spinal cord.  Effectively the vast majority of my CSF is around my brain.  CSF carriesnormal-hydrocephalus-comparison nutrients which are essential for the function of the brain and also carries waste products away from the tissue in the brain.

The brain is usually very good at maintaining the right balance between the CSF that it produces and that which it absorbs.  Hydrocephalus occurs when there is an imbalance between the amount produced and the rate at which the brain absorbs it back.

It is most likely caused by the Chiari which blocks the entrance to my spinal cord.

For hydrocephalus, it is normal to insert a shunt, which drains the fluid away from the brain to another part of the body where it can be re-absorbed.  However, since these are mechanical devices, prone to failure, my own neurosurgeon would like to perform what is called an endoscopic third ventriculostomy (ETV).  Here, he will make a small cut in the base of my third ventricle which should then enable the CSF to flow more freely.  If this doesn't work, I will need a shunt.  All of this is assuming I can have surgery in the first place.  I had my pre-op assessment a number of weeks ago and it has been decided that I need to have a heart scan and see a cardiologist, hopefully I will then get the all clear!

Syringomyelia

The spinal cord is usually solid, passing down the back, inside the spinal canal.  It connects the brain to the rest of the body, passing signals to and fro, enabling an individual to move his or her limbs at will, to feel objects and to control various bodily functions.  Within the spinal canal, the cord is bathed in CSF.

Syringomyelia is a disorder in which a cyst or cavity forms in the spinal cord.  The fluid from which these cysts or cavities are formed  is similar to CSF.  Over time, syringomyelia can lead to paralysis.  Otherwise it can cause pain, weakness and stiffness in the neck, back and shoulders.  A a person with syringomyelia can also lose the ability to feel extremities of hot and cold, particularly in the hands and feet.

My own cavity is pretty much the entire length of my spinal cord.  As such I have very little protection of my spine and have now been advised against white knuckle theme park rides (which I love!), sky diving (on my Bucket List), bungee jump (also on Bucket List) and trampolining.  My NS advised that even a relatively minor shunt in a car accident could cause a huge amount of whiplash, or worse, to me.

Diagnosis is HARD!

I think part of the reason it is extremely difficult to get diagnosed with these conditions is because the symptoms and the impact they cause varies so much.  Not just from one patient to the next but from one day, week to the next for each patient.  From personal experience, I can be totally fine (well fine for me) one day and will spend that day doing normal activities; chores, the nursery run and a trip to the park.  I may also do dinner that night.  Then the next day it will take all of my energy, teeth gnashing against the pain, to do something as simple as go to the toilet.  Having just one good day, wanting to make the most of that, can then mean I am confined to our room for days on end.  Perhaps I shouldn't push myself so much on the good days but it is hard not to when you want to make the most of those good days.

I hope this has given you just a bit more information and knowledge of this thing that is Chiari.  Most of us Chiarians will have  at least one, if not both, of the other disorders too.

Enhanced by Zemanta

1 Comment

I was never diagnosed with PND but I have suffered with depression since my mid teens. Pre-pregnancy was actually one of my worst times, I didn't, couldn't leave the flat without my husband. The very thought of it made me physically sick and break out in sweats. I lived in my PJs and getting showered, eating, drinking, even being awake was a monumental effort.

After a couple of months I returned to work. Then I fell pregnant. We didn't have much of a sex life at all but it was the one night I got drunk and got lost in the moment. I could time when AF was due by the hour pretty much so when I was a day late I was hit with fear. I wasn't ready to have a baby. Mentally, financially, professionally. We were renting and never likely to get on the property ladder. This was so not what I needed. I miscarried 10 days after my shock BFP and it had taken me about that long to accept I was going to become a mummy.

After the miscarriage I blamed myself. I lost the baby because I wasn't ecstatic from the off. Because it wasn't planned. Because I hadn't felt ready.  Because I was a shit wife.  Because I didn't deserve to be a mummy.  Because, because, because.

Eight weeks later, after another heavy weekend (my sister's 18th) I realised again that AF was a day late. I was never late. Even after the MC AF arrived bang on time, to the hour. I rushed to Superdrug, bought 2 tests and lo and behold I got a BFP.

At the time we were living above the pub where my husband worked.  I ran down the stairs (I don't do running, least of all stairs) and flew into the kitchen.  It was lunch time.  He was busy and just hugged me looking bewildered.  I burst out "I'm pregnant again."  *Stunned silence*.  "Did you hear me?  I AM PREGNANT!".  *Stunned silence*.  Cue me legging it back upstairs and grabbing the test, running back downstairs and waving it in his face, oblivious to the fact the manager had entered wanting to know where customers lunches were.

With pregnancy comes risks anyway, these are said to increase when on meds so, under GP guidance, I weaned off them.  I felt great.  This good mood continued through the early months.  The early months reached 6 months post pregnancy and still I felt good.

Then at 9 months came The Return to Work.

I'd never left H alone except for one lunch with a friend and one hairdresser appointment and even then he was only left with hubby.

The Return to Work crash hit.  Initially it was written off as normal.  Then came what I know to be Red Flags.  Calling in sick.  Not getting dressed.  Crying a lot.  Shouting a lot more.  Then I cried at work.  I was dragged to the GP and once again, signed off.  Meds were issued, meds were adjusted.

A couple of months passed and I went back to work.  I felt good.  I was coping and what's more I was happy.  So I stopped taking them.

Within a couple of weeks the vicious circle returned.  By this point my husband was back at work and H had just started with a childminder.  Not knowing when or if I would go back to work, I kept sending him.

This made me feel like the crappiest mother in the world but I really enjoyed the times that he was at home with me, I felt like that time made our bond stronger in a strange way.  Mentally I started feeling better again.

Then I pushed for a referral to a specialist regarding my migraines and headaches.  They had got to the point where I would have to spend all day in bed.  I couldn't even sit up in bed some days without being sick.  Initially my GP thought I had blocked sinuses.  That specialist sent me for a CT scan.  Sinues were clear but they wanted me to have an MRI.  Eventually after lots of appointments, scans and tests I was diagnosed with hydrocephalus, chiari malformation and a large syrinx.

Basically I am now on medication for those conditions (or rather the symptoms of them) for the rest of my life.  And no doubt the battle with the depression will also be a lifelong battle.

The end of 2011 was a good time for me mentally and physically.  I just hope that can continue in 2012 and beyond.