Chiari Diary

The last few days before surgery

So with the stress of what was about to happen, combined with Oscars 6th birthday the day before I was due to go into hospital time got a little away from me and I had a few other things to prioritise over my blog. But now I’ll do my best to recall the past few days…

Oscars birthday party was really good we picked him and Ava from school and took them bowling after school which was lovely.

I couldn’t bowl because of my head but I did have one quick go which turned out not to be the best idea as I got a little bit overexcited and made things with my head worse but the kids enjoyed themselves and we had McDonald’s after for tea which was a great way to have a final get together with the family before surgery.

The next day we did the school run as normal and after school I spent an hour with the monsters eating birthday cake, then we took the kids over to Nanny and Grampy because I was going into hospital at 5 o’clock in that evening.

When we arrived it was amazing, it looked like I was checking into a hotel and there was even a piano in reception! We hadn’t realised that Craig could have of stayed overnight with me, I didn’t really get a lot of information before the day but my room was lovely, just me and I even had my own balcony and bathroom.

I didn’t sleep so well on the first night because I just didn’t know what to expect and they were coming back and forth doing different checks on me. I had to go and have an ECG, a chest x-ray and also have my hair washed with special solution.

I’m usually in bed for 10 o’clock and it was getting on for 10:30 by the time they finished with me, eventually I think I must have fallen asleep but I don’t think I slept very well which I guess is understandable, I was told the next day I would be woken up at about 6 o’clock.

At 5:50 I shot out of bed and jumped in the shower to make sure I was clean as I just didn’t know when I might be able to wash again after the surgery. A little while later the nurses came in and started putting my drips in my hands and put compression stockings on me. Eventually the anesthetist arrived and she was fantastic, she also spoke fantastic English which was a huge help to me being in Portugal! She explained what was going to happen and I signed some paperwork.

I remember that day they gave me some kind of sedative in my room and then wheeled me to the operating theater, I felt a bit dizzy looking up at the sky but in this hospital all the ceilings were decorated with stunning artwork so it was actually really nice to look up at the ceiling. The next thing I remember was seeing theater lights and then I remember smiling at everybody… Then I woke up!

The first thing I remember asking was if it had been done yet and in actual fact I was already back in my room and all I could feel was something like a huge tennis ball taped to the back of my neck.

It was so uncomfortable the next couple of nights, it was just horrific almost to the point where I was beginning to question if I had made the right decision to have surgery.

But then I remembered what someone had said to me; ‘a little bit of pain for a huge amount of gain’

Even on waking I noticed changes in my symptoms;

My hands haven’t been cold at all and I’ve had all my feeling back in my fingers, my eyes haven’t shown any signs of nystagmus, (this is where my eyes would shake uncontrollably).

However, when I looked anywhere I had really bad nausea when I first woke up, that was pretty bad and no matter what I tried to focus on and I just felt like I was on a boat.  I tried to think about the kids playing in the garden or swinging on the swing but that made me feel sick too, if I imagined them in the garden then my imagination changed them to being on a boat again. I was sick quite a few times and I had nose tubes which made being sick really painful.

And I had absolutely no appetite I didn’t want to eat anything  and to drink anything was hard too because I could feel the tubes down the back of my throat.  On a scale of 0 to 10 the pain I was in was definitely at 9. To begin with I was so lethargic I didn’t know really what I was doing, where I was going, or how to keep my eyes open. I just could not get comfortable at that was by far the worst bit just, fortunately I had a catheter so I didn’t have to worry about getting up to go to the toilet!

I do remember at one point the anesthetist was stroking my hand and saying that I was very funny and how much she liked me. I’m really not sure if that really happened or if I imagined it and God knows what I was saying if that was the case, but hey, it can only be good right?

I didn’t see the main surgeon, Dr. Jorge, until Thursday but the other surgeon and the rest of the team that the helped stopped by to see me the day after. They popped in to see how I was and were so lovely. Everyone at the hospital were just fantastic, for the first two nights I had my own nurse with me 24 hours a day any time I made any noise; if I shuffled at all, made any noise then they were right by my side asking if I needed anything. They were so kind and so helpful and would do anything and it really didn’t seem to be a hardship for them.

I think to be honest I’ve been more than a little bit spoilt going to this hospital, but for something so extreme I’m more than happy to have paid the money to go privately. It just means as and when I might need to have any other surgery I might not want to go to the main hospital!

And then my name the main surgeon came to see me at the day then the next day and change my dressing and check my balance and is very happy with her everything and gone I went down for a cat scan to check there is no internal bleeding and I came back clear that wasn’t funny going down for that because I still felt very dizzy and sick and being pushed around on the bed I I just didn’t wanna be there to be honest but for the sake of a half hour in there it’s worth them even though it feels like I’ve been stuck here for

For decades it’s really not as bad when I look back at the time it’s it’s been really hard but looking back it’s so much easier than so worth the pain and hassle and worry I guess I’ve had only had family come to visit me because I haven’t until today I haven’t really felt myself at all but I’m getting very antsy now and I’m very keen to do things and go places and not be stuck in my room or in my chair in my bed it’s still difficult to get comfortable my right hand side my leg and my bum little bit strange.

Mate it’s constantly cramping up if I try and lift my left leg but that could just be from being in bed for so long the food is fantastic although my my surgeon came to see me today he is going to come back again tomorrow and look at my stitches and hopefully take off the bandages and then fingers crossed if I am as well as I am now I should be able to go home on Tuesday which I am so excited about but as yet the symptoms seem to be at the moment my can tell that they’re better

It’s difficult to tell properly yet because I can’t do a lot my head feels like I’m stuck in a vice I can’t bend down I am I’ve got to turn my whole body to turn my head so I can’t just look to the left or to the right I can’t look up or down unless everything moves with me so draining sometimes I still get the pain in my head but I think that’s mostly because of the stitches because as the surgeon remind me I’ve had skin colour muscles cut the bone removed is an awful lot of trauma to the back of my head so it’s expected to hurt

But I’ve got most of my trips around now I’ve got no nose tube so I’m going to the toilet by myself which is a huge relief I am I didn’t have my own nurse last night because I man I don’t mind dependent now and I haven’t had anyone all day today and I haven’t had to ring for help but I needed to get up which they were asking me to do to begin with if I needed to go to the toilet phoning to sit on the chair if I wanted to go back to the bed I was had to ring the bell to tell them that I was going to move so if you keep an eye on in case I fell over I think balance has been the biggest issue and th

And the nausea from I guess from the release of all the room in my brain now my surgeon actually said they had a photo because I asked if he did do the cauterising is a guy yes and he has obituary can show me seven little bit worried about saying that but I am interested is it still on that’s about it for now my husband his fantastic he’s been in to visit me every day even when it’s been for only 10 minutes because I’ve been so tired but it’s so good to see

So good to see him I cannot wait to go home and get into bed sharing a bed again it’s too lonely without him and I haven’t seen the kids properly yet only on face time because I don’t want to scare them Oscar seemed okay I saw him quickly I haven’t seen a BM and my Nan and my mum and my dad have both come from the visit has been really nice and it’s breaking the day up his home today this is the first am getting very bored I feel like I’m in this room 24 seven well I am but it feels like I’ve been in here for about a year so now I’m just trying to write my blog slowly and I’m playing scrabble with Craig he is at home looking after the kids and then hopefully do another update tomorrow and I just want to say thank you for all the well wishes I am absolutely overwhelmed with all the messages and everything from everyone on Facebook and the cards and the presents you guys have helped me so much thank you

4 days until surgery

My plan today was to try and relax with the family, and for us to all take mum out for a cake and cuppa somewhere to celebrate Mother’s Day, but I woke up with the most horrendous headache. On days like this I did the usual, took some painkillers and hoped for the best, but the best just wasn’t happening. Believe it or not I’m actually happy that I’ve had such a rough day as it’s reinforced just how good it will be for me to have surgery in just a few days time.

‘Calm down, just take a break, relax a little’ – This is all pretty great advice, if it weren’t for the fact that slowing down gives me all the time in the world to think about what’s just around the corner, it gives me the time to freak out… Yet if I can just stay busy then there no room for those scary little thoughts to creep in.

We’ve been talking to the kids for a few weeks now, trying to prepare them for mummy going into hospital for a few days. At first they didn’t really understand, they are only 3 and 6 mind you. But I want them to be aware of what they’ll see when they come to visit me, the big scar down the back of my head laced up with stitches… Oscar seems to understand a little better now and is quite openly talking about how ‘mummy has to go to hospital to have her head fixed, and that’s when they are going to put a cut in her head and then fix her and sew it back up again’ – I think Ava must understand to a certain degree but not in the same way as Oscar.

This morning got a little emotional, we were talking about what I need to do before going into hospital and I thought it would help to get the kids involved by helping to shave the back of my head next week just before I go in. Well Ava thought this was hilarious and was totally up for helping, then I turned to Otty who burst out in tears, flung his arms around me and sobbed through streaming tears ‘mummy I don’t want to shave your head, I love you like you are’ So of course I started crying at that reaction! I desperately try not to cry in front of the kids but this time there was nothing I could do to hold back the tears, and after seeing both Otty and I blubbering like mad Ava got all upset and joined in too, what a mess the three of us were, all wrapped up in each others arms, tears streaming down our cheeks!

 

5 days until surgery

I think the late night last night has had a pretty detrimental effect on me, it was amazing and I wouldn’t change it for the world but I feel as though I barely slept a wink which is totally out of character as I’ve always been able to sleep anywhere, any time, just like my dad. Other than feeling drained and lethargic my Chiari symptoms have been pretty much the same.

The morning was pretty great, we took Oscar back to rugby and he absolutely loved it! Plus whilst he was playing, Ava and I watched from the car and spent a good hour of mummy and daughter time together, something I realise now I haven’t made as much time as I should for. Once Craig had finished in the gym we headed back home for lunch. By now I was exhausted so after eating we all went for naps.

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I didn’t feel much better from the rest, there seems to be all too much running through my head at the moment. But for the afternoon we did our usual and all snuggled up on the sofa with a film, and actually it’s the first time I can ever remember Ava sitting the entire way through without getting bored. Transylvania 2 is definitely a new favourite!

This afternoons snuggle time has been another of my most cherished moments, it’s rare we have such relaxed and super happy times like these as although they do occur they tend not to last for more than a few minutes at a time.

Tonight calls for an early night for me, it’s almost 10pm and I’m more than ready to hit the hay!

 

6 days until surgery

The only thing I am going to write about tonight is just how much love and support there is around me, to the extent that I actually had no idea…! Obviously there are my family, they are my rock but I have been blown away by the clients I have. One client who I haven’t done anything with for a good 4 months messaged out of the blue asking how I was and wished me luck and a speedy recovery and the whole email itself was just so lovely, and completely unexpected.

As if this wasn’t enough then another client I am currently working with asked for my address so they can send me a little something during my recovery, again, so unexpected and the warm fuzzy feeling it’s given me is just amazing! I don’t know if it’s because I’m so used to dealing with what I have and the prospect of surgery that I don’t see the surgery as such a big deal, but all the good well wishes and support I’m receiving is just out of this world and I rearly don’t feel as though I deserve it.

But there’s more! Tonight I went for a pre-surgery dinner to the most amazing Indian restaurant with a few of my girlie buddies over here in Portugal, this in itself was perfect enough but do you know what they did?? They made me cry…. Full blown balling my eyes out, but it was for good reason as they brought this out to me;

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A basket full of the most thoughtful things you could imagine, three beautiful photo frames with pictures of my family so I won’t feel alone in hospital, a tonne of English gossip magazines, plenty of sweeties for the super naughty sweet tooth I have, and some pretty special body wash and loofah. I’m telling you, these girls are amazing!

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I truly am blessed to be not only surrounded by some incredible people but to also have the pleasure of being in touch with such fantastic and wonderful people through working online.

To everyone I’ve mentioned, and to those of you I haven’t, from the bottom of my heart, thank you – without you all I wouldn’t feel as positive and confident about what’s to come as I do right now.

 

7 days until surgery

After my little downer yesterday I decided to try my hardest to turn that frown upside down and try to be a little more positive today. So with that in mind I’ve decided that as my diet is about the only thing I actually feel I have any control of then that’ll bloody well be the tool that I use to start getting myself back to being the happy, confident and relaxed person I once turned myself into. Then, hopefully, and in time, getting back to the gym will be the next step to follow.

My head has been painful again today and I’ve still got a tonne of pressure in the base of my head and across my shoulders. On top of those fairly regular symptoms I’ve noticed that my jaw is pretty sore. Without really being aware of it, I’ve been grinding my teeth pretty horribly, all I can think is that I’ve been doing it because I’m beginning to get nervous about what’s coming.

Work is slowly but surely coming to a stop ready for surgery and over the past couple of days I’ve been spring cleaning a room at a time. For some reason I can’t bare to go to hospital leaving the house in even a little bit of a mess. Cleaning for me is a major stress reliever and once I’ve had the surgery I’m not going to be allowed to do anything… Literally nothing… So deep cleaning now is hopefully going to get things out of my system for a while.

There are plenty of things helping to keep my mind occupied on other things over the next few days. I’m at the hairdressers in the morning, then later tomorrow evening I’m off on a pre-surgery dinner date with a few friends. There’s Mother’s Day on Sunday, and Oscar’s 6th birthday the day before I head to hospital, so all in all there are lots of  things to look forward to.

One thing I have come to terms with though is just how much I’ll miss my little ones whilst I’m away, it’s only a week but I have a feeling it’ll be a week too long…

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8 days until surgery

I’ve been a little quiet the past two days and I guess that’s mostly from being too tired to write. From what I can remember things were so-so, still in pain here and there and still a little on the low side.

Today has seemed a little different. I woke up early to get a head start on work deadlines and was surprisingly productive. After the morning school run Craig and I went for coffee at our local and this photo popped up on his Facebook feed from 3 years ago;

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First of all I could hardly believe how much has happened in three years, competing in my first and only bodybuilding show, becoming a fully freelance instructional designer, completely relocating to Portugal, seeing how much my family have grown and changed… It’s insane!

To begin with I was pretty chuffed with everything that had happened, but then I began slipping into a little bit of a dark hole… it’s been months now since I was at the gym and I haven’t even been able to successfully use the cross trainer in weeks without repercussions either. Weight lifting had become a huge part of my life and to suddenly have it taken away from me has been more difficult to cope with than I had realised.

When will I be able to go back to the gym… what will I realistically and sensibly be capable of… What if I can’t ever lift heavy again… What if I just can’t lift at all without it becoming a risk… What if…?

With nothing currently keeping me grounded like training did, I’ve been struggling once again with diet, I’ve not wanted to eat clean – it’s just seemed too boring and I haven’t seen the benefit of committing to the diet when I can’t even train. Yeah… A completely stupid way of reasoning, I get that. But still I can’t shake it.

So slowly by slowly I’ve been putting the weight back on, in turn getting more fed up of my reflection and that little devil on my shoulder tells me the best thing to do is to eat something yummy, ‘you’ll feel better for it’ argh!!! I just want to break this cycle but my willpower seems to be hiding behind the reasoning that there’s no point in trying because I can’t even exercise.

Here’s hoping that surgery will enable me to get back on the path that helps lifts my spirits and cheer me up. Without the gym I’m just not sure what else I can do to give me the same boost and satisfaction I get, or rather got, from training.

 

9 days until surgery…

 

10 days until surgery…

 

11 days until surgery

It just goes to show how each day can be so different from the next. I woke up really tired this morning and felt as though someone had wedged a doorstop in the back of my neck, my neck and shoulders felt so tight it was unreal. Still, I dragged myself down to the office to try and get a little bit of work done. When my work stint was up I headed back upstairs still fairly tired. After a couple of coffees and a freshen up I felt a whole lot better and actually energised.

Pain wise my head has been bearable today but I’ve been struggling more with the painful dizziness I get on standing up as well as immense pain lifting things. Once again it’s becoming more apparent as to what my my limits currently are, for instance I’ve had to stop myself doing the following things and ask Craig to do them for me; Lifting Ava out of the trolley, putting shopping from the trolley into the car, moving Oscars box of Lego, picking up laundry from the floor, moving the dogs bed, bringing in logs for the fire… To be honest it’s killing me not being able to do the simplest of things, I hate to ask for help at the best of times and this just seems ridiculous.

On top of this I had an extra weird moment tonight when my hands started getting really numb and two fingers on my right hand turned bright white and were so incredibly cold and painful it felt like the tips were literally freezing themselves off! Thankfully though they’ve pretty much gone back to normal now and just feel as though they’ve been burned on a hot pan. Touch wood I’m felling pretty normal right now so fingers crossed it’ll last for a while.

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12 days until surgery

On going to bed last night things went bad… I went from laughing hysterically and completely out of control to suddenly balling my eyes out and realising just how truly scared about the operation I really am… The evening turned out to be pretty awesome though as nothing beats a good old snuggle with my big brute of a hubby, a roaring fire, good film and plenty of munchies. I think it’s safe to say that the rest of the day can be better off forgotten.

 

13 days until surgery

I’m not entirely sure which was the worst way to be woken up this morning, either by the shooting pains in my arms and legs or by being poked in the eye when Craig tried to grab his pillow..! Either way I guess I would have just have preferred to stay snuggled up in the warm, minus the pain in my limbs and eye of course.

Painkillers were the first thing to be done on getting up and although I slept pretty well my head was still bad. I did however manage to get a good amount of work done thankfully and was then able to whizz off to Coimbra with Craig this afternoon to run a few errands which worked out quite nicely as my concentration had pretty much gone out of the window by that time anyway.

It’s been really cold and wet since last night and I wonder if this affects my symptoms at all as I’ve had really bloated, almost chilblain feelings in my hands all afternoon and now my joints feel overtight and sore.

This evening has been fairly relaxed so far, and that can only be good as I lost my mojo at around tea time and have felt as though I’ve been floating around without a purpose for the last couple of hours, not only this but finding the energy to do anything has taken all the effort I can muster up.

Odly though, I’ve started feeling as though I have swollen glands and that my throat is closing up making it hard to swallow. Now this may just be psychological as issues swallowing are a major symptom of Chiari, but until now this was one symptom I had gotten away with.

My mood has been low today again, I try to keep cheery but for some reason I’m just getting snappy and angry – I guess it could be the stress of what’s coming causing this even though I’m not fully aware of it being in the forefront of my mind.

As it stands, the monsters are having a movie night in Oscar’s room and the littlest ball of fur has just been bathed. So it’ll be an evening in front of the TV with the hubby and squishes with a fresh smelling Gurghi whilst the big ball of fur warms herself in front of the fire.

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14 days until surgery

It was an early start for me today, sometimes these are productive, other times not. 5 am and my wristband started vibrating to give me the wake up call. After sloping out of bed and scuffling around in the dark to find my slippers. I managed to get my bearings enough to sneak out of the house and down to the office without waking anyone other than the dogs who were more than happy to follow me out into the freezing cold.

My productivity wasn’t as bad as I had expected it to be and I managed to get a fair bit of work done in my two hours before the rest of the house woke up. After taking the kids to school Craig and I popped to our usual cafe for a cuppa and that’s when things began to go downhill. The pain in my head began, my eyes became more sore and I was getting to the point where it was a struggle to make conversation. I took a painkiller in the hopes of taking the edge off but it didn’t seem to have much of an effect if any.

Once home I figured the best thing was to take a nap, I could barely concentrate as it was so it seemed pointless sitting at the computer staring at the screen and getting nowhere.

Little under an hour and I felt quite a bit better than I had earlier, so back to the grindstone I went. It’s becoming more apparent that I  no longer hold the capability to keep focus for much more than an hour at a time so with this in mind I think the best way forward until surgery is to have mini work stints followed by rests throughout the day.

I finally finished my planned work at 7:30 tonight and am now plonked on the sofa feeling pretty wiped out, as well as a little on the down side. In terms of pain I’ve been having the usual painful dizzy spells when I’ve been standing up since this afternoon and it usually takes me a second or two to recover by staying as still as possible.

It’ll be bedtime in the next hour and other than the tenseness and tightness in my neck and shoulders I don’t expect  sleep to be too much of a problem tonight.

 

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