health


[I’m told that for some people this dangled mid-sentence and never got to the point I wanted to make, so I’m trying it again]

 

It  has been a relatively quiet week.  I spent two days working on my chapter, determined to get something that vaguely resembled a draft ready before I went to London.  At the moment it contains several claims that I can’t really substantiate without a lot of extra work reading through all the ballads again and tagging them.  No bad thing, probably, but very time consuming when

a) you realise with hindsight that it was obvious you should have done that from the beginning,

b) according to all the plans, the chapter should have been finished well over a month ago,

c) according to the current plan, the chapter should be finished by the end of January and

d) I’m away all next week in London, working in the British Library.

On Wednesday, I spent the day in Manchester having a long chat with a friend, discussing life, the universe, my husband’s upcoming retirement, my job prospects and my thesis.   On the way home I felt an unaccustomed sense of peace – whatever happens is going to happen regardless of how I feel about it.  But it didn’t last – by yesterday afternoon I was pretty down in the dumps.  I’m trying to put it to one side, but the prospect of the trip to London doesn’t help.  More on that later.  I spent Thursday and Friday doing some of the fiddly little things that needed doing, such as looking through some of my findings from the State Papers and cataloguing some of the ballads.  All things that really needed doing, but somehow, as they don’t produce much in the way of writing, they don’t feel like they add up to much.  It’s good to know that I’ve made a bit of progress with them, so that gives me some satisfaction.  Yesterday morning I even submitted an abstract for a music conference in Manchester, which will be a bit of a change.

So back to the subject of the trip to London and the dread of the post title.  This causes me genuine confusion.  I know that I will enjoy being in the archives once I’m there and I know that I will enjoy seeing friends and family while I’m down there, so why do I feel not one spark of enthusiasm for this trip?  Instead, all I feel is an almost overwhelming sense of dread.  It makes no sense at all.   I can only assume that it’s something to do with the depression.  I can see why people might be worried about supervision meetings and perhaps why panel meetings might cause anxiety, but to have such an aversion to doing something that I enjoy is incomprehensible.

I think I said I wasn’t going to turn this into a blog about my health, but because I have just had a comment on my blog post ‘ The Lady with the Headache‘, I thought I’d give you a quick update.

Reversible Cerebral Vasoconstriction Syndrome, being reversible, has reversed.  There is a slight feeling of panic whenever I get a headache, but having stopped my SSRI antidepressants there is no reason why it should come back.  HAving gone cold turkey from the citalopramm I had been taking, I think I have now adjusted as best I can to life in all its glory, without having the extreme highs and extreme lows cut out.  It’s taken a bit of getting used to.  I am very, very emotional…  Talking of which, just in case anyone reads this and decides to stop their anti-depressants dead, DON’T DO IT.  It’s not how it should be done.  Discuss it with your doctor before you do anything.

I saw the nuerosurgeon (who was, I might add, lovely) during April, having gone on a cancellation.  He sent my brain scans to Sheffield, who declined to carry out radiotherapy because of the location of the cavernoma – it’s too close to my skull.  I am lucky, in that I have only one cavernoma and some people have lots.  I know I am lucky, and yet I don’t particularly feel lucky.  I would probably have gone through my life never knowing I had a cavernoma, had it not been for the RCVS.  But now I do know, I rather wish I could get rid of it.  Of course I don’t want brain surgery and to consider it would be ridiculous on something so small with such a low risk.  But nevertheless, I am now aware that there is a risk.  Ignorance is bliss, as they say.   If it bleeds, I will have stroke like symptoms down the left side of my body – let’s be honest, if I have any symptoms which might be a bleed, I will go straight to casualty.  I’m told that the symptoms would go away when the bleeding stopped and the blood was reabsorbed, but it’s not a nice thought.

To end on a positive note: for a couple of months after I came out of hospital, I thought of the cavernoma as my own, personal, ticking time bomb which I carried around in my brain.  It was the first thing I thought about in the morning and the last thing I thought about at night.     It isn’t anymore, which means that I am learning to live with it.

 

Scream Cropped

Scream Cropped (Photo credit: Wikipedia)

I swear that if I hear myself described as ‘the lady with the headache’ once more, I’m going to scream. Actually, I probably won’t, because it would hurt, but inwardly at any rate, I’d be doing a Munch. The word ‘headache’ alone doesn’t begin to describe it. Forget migraine, I’ve had them and this was nothing like it.  ‘Thunderclap headache‘ begins to get somewhere close.  At my age, spending 9 nights in hospital after an ambulance transfer is quite an achievement.

 

 

For a while they thought it was a brain haemorrage or a stroke, but thankfully it wasn’t.  So after CT scans, MRI scans, lumber puncture and an ultrasound of my head which had a name with ‘Doppler’ in it, the headache that caused me to vomit, sweat like the proverbial pig and hardly able to move for several days was revealed to be Reversible Cerebral Vasoconstriction Syndrome.  A pain I wouldn’t wish on my worst enemy, if I could think of a worst enemy on which to wish pain.

 

 

Essentially, what happened was that the blood vessels in my brain went into spasm, twice, almost 24 hours apart.  It happened like flicking a switch – the second time I was just sitting there, minding my own business feeling slightly nauseous when suddenly it felt like my head exploded.  Cue ambulance teams, A&E and breaking my own personal record for a hospital stay. But what is really interesting is why it happened.  Not stress, not the pressure of juggling working on a PhD with bringing up a young family…  no, it was the SSRI antidepressants which I’ve been on, on and off, for most of my adult life.   They were stopped dead and that’s that.  Never again.  The neurologist said I need to discuss alternative forms of antidepressant with my GP, but to be honest, for the moment I’m reluctant to let anyone mess with my head for a while…

 

On the plus side, all the scans revealed that I do indeed have a brain, which will probably come as a relief to my PhD supervisors in Manchester!  It also meant that the neurologists found a cavernoma on my brain, which could in the longer term, cause epilepsy.  So for now I have to take things easy for a bit.  I’m signed off university for another couple of weeks, and I have to see the neurovascular medics at the Royal Preston Hospital to discuss the management and treatment of my brain blackberry.

 

There are many things that I have to be thankful for.  Accuse me of melodrama all you like, but there were moments that I didn’t think I’d make it home so merely sleeping in my own bed is one!  At the risk of being over-emotional, this post will finish with two bits of fairly unprofessional and homespun wit and wisdom.

 

First, things I have learned.  Never underestimate the value of a brain that goes about from day to day performing its functions normally without you even realising it is there.  Family and friends are the most important things in the world and we can’t tell them how much we care about them often or strongly enough.  Going without cuddles is very, very lonely.  There are several excellent reasons to leave your front door unlocked, one of which is allowing the paramedics access to help you when you are alone.

 

Steve Tilston

Steve Tilston (Photo credit: Bryan Ledgard)

Second, people to thank.  A random list based on the fact that I’ll probably never get chance to thank these people properly.  Andy, the first response man, who held the hand of a total stranger while she vomited and screamed.  My husband, children and wider family, because I love you all and when I needed you, you were there as always.  The ambulance team from Blackburn or Burnley (sorry, I forget) whom I could not recognise again because I don’t think I opened my eyes long enough to see you.  The staff of the Royal Preston Hospital, who were without exception calm, patient, compassionate, reassuring and kind.  My lovely friends, for managing to make me laugh despite it all.  My supervisor, Glyn, for undertaking to sort out anything at the university for me.  And finally, my friend Steve Tilston, for writing beautiful songs and singing them in soothing tones that got me through several very long nights.