Tuesday, January 28, 2014

redefining pain

This is taking me a while to write. For the last couple of weeks I've had blinding headaches which have left me tolerating less and less screen time, or even reading print on paper which has been a huge challenge for someone whose coping mechanism with being unwell for whatever reason is to curl up with a book.

Over that same timeframe my energy levels have taken a nosedive. Energy hasn't been my strong suit throughout my adult life, even when I'm doing well I generally have lower reserves than many of my peers, although having said that there is rather a scary number of people I know in my age group who have had debilitating energy levels over the last 25yrs. It does make me wonder whether there is some bigger picture underlying factor behind it all. But even by my standards my energy levels had been dropping for some months and then fell through the floor.

Then a week ago Sunday I found myself doubled up on the bed, then the floor in excruciating pain - period pains completely off the scale of reckonning. Topped off with full on projectile vomiting and diarrhoea thrown in for good measure and a head that felt like it was about to explode, I was not a happy bunny. Once it became obvious it really wasn't going to just stop and go away and I might as well be eating smarties as paracetamol the ambulance was called.

Well of course it was Patti who turned up, who 11months ago had been the one to respond when Phyllis fell and fractured her hip - I hope this doesn't mean we'll be taking it in turns year about! Thankfully she had a helper with her this time as there is no way Phyllis could've helped Patti carry me out to the ambulance in the stretcher chair.

The morphine shot they'd given me hadn't done anything so I spent the short journey up the hill to hospital with some kind of inhaler thing in my mouth that was supposed to help, it didn't. In fact it took two more shots of morphine to kill the pain. No wonder the paracetamol hadn't worked!

By now my veins had 'collapsed' which as far as I can work out means they'd gone into hiding - I still have a lovely collection of bruises and puncture marks on my hands and arms from where they had tried and failed to draw blood, the drip was going in the one place they'd had any success and the luer the ambulance had used for morphine had a fitting they couldn't use. So femoral artery it was for the first of what ended up being several blood tests.

At this stage I was two days off 8 straight weeks of periods back to back (I'm now at 9 weeks and decidedly unimpressed about this, although it might, just might, finally be stopping....) so the plan initially was to get me to Whangarei and the gyneacologists. But once they realised that even though it had been 8 weeks near as damnit, the bleeding hadn't been heavy, the blood tests were rather confusingly coming back normal and the cramping pains dropped to more normal levels the plan was revised to keep me in overnight (longer if need be) get my fluids back up, fill me with painkillers, try to stop the bleeding via different meds (the first attempt some weeks back by a GP having spectacularly failed) and do a referral.

More (and yet more, post-discharge from hospital) blood tests came back normal which started to indicate a possible virus as being responsible for the sudden energy drop and need to sleep more than be awake. There is a nasty one doing the rounds at present symptoms complete with loss of energy, projectile vomiting, diarrhoea and stomach cramps, hmmm.... mind you it also includes a persistent cough and sore throat which thankfully (as yet...) I haven't had. So this could explain the ongoing stomach cramps way beyond the  couple of days that I consider normal (although with nine weeks of periods 'normal' doesn't really figure).

My blood pressure is usually low, but seems to drop stupidly low very easily at present which has resulted in a couple of really wobbly days since discharge - possibly too many cinnamon and honey drinks, so I've switched to ginger and honey instead just to be on the safe side. Cinnamon can apparently drop your blood pressure, whereas ginger boosts it.

I've ended up compromising on the headaches - I have tablets that help, but upset my stomach if I take two a day, so I'm managing on one in the morning and trying to get done what I can then which works up to a point, as long as I don't fall asleep again and miss their benefit!

I've had extended times of low energy in the past, I'm used to managing that - it's a bummer, but I've learned the hard way not to over do things on the days when I do have more energy as I then end up sleeping through the next day to make up. But what has had the biggest impact on me over the last couple of weeks was the pain. I thought I had a fairly low pain threshold, in fact I still think that, but I would've previously assumed I'd've passed out with pain that was so severe as to need 3 shots of morphine to control. As I was writhing around on the living room floor in pain I had very vivid memories of Heather doing much the same 20 yrs ago on my bedroom floor at Napier Rd, in her case it was gallstones but the effect was much the same. I don't think at the time I'd really appreciated what pain like that could feel like, but I sure do now. It was sort of a comfort though to remember that time and know that it had been overcome with a hefty dose of pethadine, it meant I had faith in doctors' ability to stop it.

The stomach cramps that have continued this week have been 'normal' levels of pain, the sort I've lived with on and off for the last 25yrs or so, but although the occassional one has had me doubled up until it has passed what has dominated my thoughts each time has no longer been 'heck that hurts' but relief that it wasn't as bad as I now know it can be, edged with fear that the next one might be.

I do seem to be making some progress though, yes I have days, like yesterday, where I achieve extremely little and feel no better than when I came home from hospital to sleep it all off in my own bed rather than theirs. But I also have a few hours every so often of functioning better, like just now, of being able to think without it being a struggle, to catch up on emails etc and be able to read the supportive and loving messages on facebook from F/friends and family around the world. Yes my joints ache, yes my head hurts, yes my abdomen feels like I've been kicked by a horse and my back like I've been doing hard labour for weeks but compared to what landed me in hospital, it is nothing I can't cope with.

Luckily life is such that I can take the time I need to get my strength back without pushing myself too hard, I can pace myself and if I need to sleep, well I can do so. I am very aware that what is hopefully a temporary situation for me in terms of energy levels is what is normal every day life on a good day for a couple of my friends, so I'm counting my blessings, taking inspiration from their positive attitudes and having faith that somehow everything will work out, as the quote goes 'Everything will be all right in the end... if it's not all right then it's not yet the end.'


ms lottie said...

That's really rough. I so hope it passes for you soon and everything gets figured out. I'm going to tuck that quote away for some time in the future when I may need it...

Anna Dunford said...

Thanks Charlotte. It's a good one isn't it =) It's from 'The Best Exotic Marigold Hotel'

Anna Wilkinson said...

Oh Anna, what a sh!$t! Really sorry to hear that. Big gentle hugs to you and healing vibes.

styler said...

oh anna, this is heartbreaking. I can only wish you a good answer to everything and fast, and i know this sounds strange but don;t let the pain dictate your life if there is medicine that can help. and if that medcine has side effects get them to prescribe something new.

Anonymous said...

That just sounds unbearably awful. I'm so very very sorry - there is a small care package on it's way to you with lots and lots of love. I was talking to Maureen and Jane at Meeting on sunday and told them you weren't well atm, both of whom remember you growing up and both of them sent their love and were sorry that times are tough.
Much love and hugs
dawn xxxx

Anonymous said...

Hi Anna
Thank you for taking the time and energy to explain this to us all. I too have squirreled away the quote you shared. Wishing you all the best and sending you warm vibes, look after yourself. Love Mary

Anna Dunford said...

Thanks all of you =)
What I forgot to mention is that I have had an ultrasound and internal examination and nothing particularly out of the ordinary was found - hence the gynae referral to see if they can spot anything.
Due to a hiatus hernia (which was the last time I was knocked off my feet this long, 3.5yrs ago) I can't take various meds without aggravating my insides - my GP thinks I should just take more of the meds I take for my stomach and deal to the headache, but I hate the idea of taking tablets, even just a higher dose, for side effects, hence the compromise. Hopefully the headache will go away soon anyway...

Audra Hunter said...

There are things they don't tell you about being female and getting older. That it can be like this is one of them. I'm in the same boat, but for me it's either indescribable pain, or so much blood loss that I can't get out of bed without the flat looking like a knife attack has occurred. The anaemia, the loss of energy, the weight loss, the complete inability to function normally and the feeling that I must be going completely mad is truly awful.
The non-invasive tests they do don't work well if you've had major surgery, which means my options are limited. I'm luckier than you that I get a few days reprieve each month, although the time in between bouts is getting sorter. If it had been constant I doubt I could have coped. Where I've not been so lucky is that the CA125 is elevated and the ultrasound wasn't completely clear. Huge hugs, a cup of tea and understanding that words cannot convey.

Anna Dunford said...

Yikes Audra, that's really awful. At least my blood loss has been fairly low most of the time so with iron tablets I'm fine on that front, and the indescribable pain was (so far...) one day only, the rest of the time it has just been same old, same old here we go again stuff, but until 10 days ago just occassionally rearing its ugly head and disappearing with a couple of swift paracetamol. Since then it has been stubbornly hanging around but manageable.
There'll be nothing of you left at this rate - I hope they stop it all soon before you fade away completely on us. At least my tan means I don't look like a ghost! As to weight loss I look about 4mths pregnant due to bloating, it's no wonder every flippin' medic asked me 'are you sure?' when I reiterated there was absolutely no way I could possibly be pregnant!
Hopefully we'll both manage to be awake and online at the same time soon and can skype... meanwhile take care of yourself, and I hope others are looking after you too. Hugs, tea and chocolate right back, A xxx

Audra Hunter said...

They are looking after me, although I miss my Anna! I hope you can meet a couple of them in 2018, I think you will see each other's light pretty much instantly. As always we seem to suffer simultaneously in silence, this time on opposite sides of the globe. I think we should make a pact not to do that in future! The tablets they gave me are starting to work and the pain has decreased, the iron (and calcium) tablets are helping too. This is the first time in months I'm not floored by it all. I'm confirmed on the waiting list for surgery, no messing about here. I hope that your appointment comes swiftly. Email me a time to call and we can try to make our energy levels synchronise. If that fails, we can just set another time and keep going until we succeed. Rest, recoup, do not worry about me (I'm a tough old boot), focus on you and don't over do it (vain hope!).