Putting Socks On (by sarah)

The last two weeks have been amazing, wonderful and awful at the same time - as always with our bad luck field. So yesterday Al was already in pain when he took the kids to Country File Live, they all enjoyed themselves but he was tanked up on pain killers to survive the day - what ever he did it was going to be a tanked up on pain killers day.

By the time he got home he was in considerable pain and we did all the normal - hot baths and massage and his physio - but over the last year his hip has been getting alot worse again including him having to miss Krav and park runs because he can barely walk.

This morning I had to put his socks on for him - this is not the sciatica - this is his hip (which may or may not be part of the cause for the sciatica).

He's been a bit depressed about this - the amount of pain he is in is well... loads. But more than that it means going back to the Dr to talk about hip replacements - something he has desperately been trying to ward off. Just after Mary was born he was in lots of pain and the Dr told him that his options where to pay for physical manipulation to try and slow the wear on the joint down or he would def. be having the hip replacement before he was 40.

Obvs. hip replacements are not something you really want to be getting into before you are 40 so we paid knowing it might not work or would only work for a while but hopefully would get him to past his 40th birthday. The treatment was no longer avalible on the NHS though the hip replacement would be. It worked really well for a few years and made a huge difference. Initially after Mary was born we both had mobility issues which were fortunately slightly different but we would have to co-operate to change the babies bottom!

It was a bit of a nightmare time capped off with him and the baby getting pnumonia and a house move. All that aside we had been hopeful - the manipulation did wonders and for the first time that he could remember - standing still did not hurt him!

Basically up until that point his leg had been rammed up into the hip joint, compressing and wearing it out. This was left over from some child hood accident - we don't know what but the Dr was surprised he did not remember it as it was have been painful. It was possibly falling down the stairs or something.

Anyway the joint is already worn and we were just buying time. He's been doing the strengthening exercises and working on general fitness and posture which need correcting... but then about a year ago it started to occassionally pain him again and has just been getting worse and worse and of course because he was looking after me with my zillions of hospital appointments he didn't really want to say anything as it's going to be a whole ball of medical stuff for him too etc...

Well his now shuffling about increasingly with little let up, yesterday had him walking about on hills so he is quiet frankly in agony :'(

He tends not to say when things are wrong with him but he is actually really struggling at the moment - so please be nice! No one likes it when someone else has to put their socks on for them!

We Want Our Alaric Back! (by sarah)

So yesterday Mary tried to bite me - she pulled the bite at the last minute so basically did that thing dogs do when they lay their teeth on your arm and give a warning pressure. She was in full melt down - the issue - we weren't going over the bridge on the way home. She had already pinched Jean hard enough to leave a mark and so had not had her promised ice cream.

I was pretty tired by this point I ended up giving Jean the bags and piggy backing Mary the rest of the way home after she broke down in tears. Daddy has left - I keep explaining he is coming back and she is excited he might bring her a present but in truth she just wants him back.

I've been getting worse and worse as the week has progressed with remembering what needs to be wear. I forgot PE kit and had to do a lightning dash change for Funky Thursday. Mary drew on herself in felt pen yesterday morning and again this morning. But they've been fed and kept clean and had lots of hugs and the same goes for the cats and chickens.

Once home yesterday Mary was still in melt down and threw all my paper work off the desk onto the floor and then broke her heart in sobs saying no one liked her. Someone she wants to be friends with at school doesn't want to be friends (for now) and she thought I'd hate her as she tried to bite me. I explained I love her - I said I wasn't happy with her when she tried to bite me but that I still loved her.

She settled down to sleep and wasn't too bad this morning once she worked out Daddy is coming home but both girls are frustrated with me. I couldn't even say goodbye properly this morning it kept coming out as goodnight - and speech got to the point last night where they were struggling to understand what I was saying. (This is what happens if I don't take all the breaks and things I need due to the head injury)

On the whole I think we've managed ok, last night was always going to be the most taxing part as it was the latest night with the most walking etc... And I think speech starting to go on day four is pretty awesome actually and Al left me and Jean with numbers to call if we got really stuck.

I thought the freezer was broken but it appears to be more about Jean putting her water bottle in the top and the freezer not shutting properly and I remembered that the heater in the attic is actually an aircon unit got during my pregnancy with Jean. So me and Jean sorted that out and that improved Mary's temperament no end!

We went out and watched the starlings begin to flock and that cheered us all up.

Al is currently on a plane - hoping to see him tonight!

Worried nay Petrified (by sarah)

So I mucked up which month was which and we ended up over booked for June (we were pushing it with May!), this is over booked due to head injury recovery etc... well I am having virtigo issues and have a bitten tongue again... I need some down time but that is not really going to happen because today I have to go to the hospital by myself for physio which has whacked me out every other time leaving me exhausted and dizzy.

I've been at the hospital once or twice a week for months now and Al's work have been amazing but... but today he can't come due to meetings. Getting to the hospital is not the problem I can just walk there - it is the getting home again - it is the getting home in time for children to get out from school.

There is a planned work around, that I worked out yesterday but haven't heard back as to weather it is a go or not yet!

Then tomorrow... tomorrow is a memorial reception for one of my Undergraduate lecturers in South Ken. I am desperate to go but a) I am already so tired that I am whoozy and the tinitus is high b) there goes the money for my laptop! I may stay over and come back Thursday. I may yet bail - it leaves Alaric running Scouts with Mary in tow.

I have a meeting Wednesday morning - I am taking music and sleeping on the train - it is the only way!

The weekend we are back in Essex for a few hours and then me and the girls have to come home on the train as Al is off to the US for the worst timing - he gets back the day before my cousins wedding so me and the girls are there on the train too and I am reaching the stage of over tired where I can't read properly and I don't want to rely on my 11 yr old to read all the tickets and signs and things because that isn't fair!

I am being taken and met at the stations and hotels are already booked but it's still enough stress - it would have been stressful without head injury stuff.

So yeah feeling edgy about the whole thing.

Plus I am already making mistakes - we turned up to the school fair not realising that we had to bring our own tables - we set up on the blanket - Alaric looked after it all while I did face painting for pretty much the whole duration (4 hrs - I'd promised the neurologist I'd only do 2 hrs of such activity :/). And we sold one pair of ear rings for £1 - these are earrings I have made including the beads and for some of them the metal work too. I don't do selling for less that material costs and it urks me to sell below time cost etc... This confirmed things for me - the last few years we have sold one or two small thing at events in Cranham - the last craft fayre we actually took NOTHING so it just cost us the pitch fee and a day of our time. So I'll come to the things and spend my money on stuff for the kids and no more pitch fees. I am still doing the comic cons and zine fayres and trying out some of the inner city crafty type stalls but really I fell out of love with the craft fairs about 5 odd years ago now - they'd been in decline (for me I don't know how others were doing) for a couple of years before that and I personally need to cover more than my pitch fee and then they haven't even been doing that.

I'm good at workshops and people pay me for them and they tend to eat my weekends so there is also not really enough time for fairs and fetes either.

Plus you know I didn't enjoy Sunday - I felt a sense of acheivement over the face painting - it raises lots of money for the school and makes all the children happy - I LOVE that sort of thing and will do my damndest for that sort of thing. But the stall thing is soul destroying - the knitting and jewellery and fimo etc... represents hundreds of my hours making and creating so it always feels like a rejection when this sort of thing happens. And to be honest I don't think it would have been much better if we'd had a table.

And yes I'm in a negative funk - I've been doing events non-stop since the end of April and it's been amazing and yes there was only one or two events in a week but that is the limit! This last week was an over reach as we knew it would be - it was supposed to be fine but then a memorial and US trip and more hospital appointments got thrown in on top.

Someone asked me at the weekend what I do when I am not at events - I get up and help get the girls ready and Al out to work, then I have a little 2 hr window where I can work on the computer or intensively read - it is not really a solid 2 hours as 40 mins or screen staring is enough to plunge my poor brain over the edge so it is broken up with house work.

I do physio and rest/nap for half an hour, then I do crafter-maker-art bits until my next scheduled break of 10 mins, then I make my lunch and eat it and do more physio and go for my longer sleep which is 1-2 hrs, then I tidy up and finish off the morning jobs and have my next half hour break/nap and then I do domestic stuff until evening when I may or may not get some time with Al for us to just be and then it's bed time - sometimes I spend the evening riding my exercise bike - I like to do 10km min on it. These are actually very productive days - I get a hell of a lot done and a lot of resting but yes they are not full "working" days. And on top of that I can't do too many workshops or too long but the amount of time I am good for is increasing but it is a long slow road peppered with naps!

A key thing is that I have to loose expectation - other peoples and my own of what is "enough" work etc... that is the hardest - I hate watching people work when I am not.

Me and Mary and Park Run (by sarah)

A few years ago now me and Alaric were at a tech and society conference/festival thing - can't really remember what it was and we came across the brand new idea of a Park Run - there was only the one of them (I think poss two) at the time. It sounded like a fantastic idea but alas none was near enough to us.

I remember wondering if I would ever be fit enough as I was on some form of walking aid at the time (can't remember if it was crutches or walking stick). Anyway they appeared in our local area and Al's been doing them on and off and then Jean and then today me and Mary went along - we did not finish but we did a whole lap of run walk run before Mary wanted to lay down. Then we were going to walk a second lap but she decided she was going to run a bit more - so we run walked half a lap before she spotted the playground and in we went to play until Al and Jean came to find us.

Jean was a bit glum as she wants her t-shirt and because she stayed with us for the first lap she also didn't finish though she did do two full laps but she refused to leave us noobs to it! Al thinks he may have a new PB. Parkruns are 5k - this was the first non-running around the block I've done since the half marathon in my teens! Literally 20 yrs ago almost perfectly I think!

I was very worried how my pelvis was going to be and how my balance and things were going to be - there was a slight issue with my gaze instability at the beginning because runners cloths are all patterned and bright and moving around but I know better how to cope with that thanks to the head injury team 🙂

Yeah we didn't finished but me and Mary can build up and there was actual tails on tail runners! Big thankyou to all the Kingsway parkrun, Gloucester.

Also I am now not getting restaurant pizza until I get round all three laps!

Wobbly Eyes and Ear Crystals (by sarah)

Yesterday I turned up for a physio appointment - I wasn't sure what it was for but thought it might be for my eyes which seemed weird but turned out to be right - of course reception were confused because I said physio and tried to direct me to the physio department - turns out it's under neurology and then they couldn't find my name and then found (once hyphen was sorted out) and then they asked me questions about number which I couldn't answer and felt stupid. I can say my birthday because I know the sounds but they pulled the numbers out and not the months name and I couldn't process it 🙁

To be fair I was pretty tired and struggling slightly when we arrived as I'd had to do double admin that morning. Then it was asking for house number which I also failed at though I do know my address honest! And then they asked me if I was the mobile ending in .... now I could have recited the whole number because I've worked at that and have a story that builds the numbers but I couldn't fathom weather my phone number had those numbers in at all!

So Al had to answer for me and I was already upset because it was his birthday and we were at the hospital and it was his birthday and I know I'd gotten him a card and present but I couldn't remember where they were or even exactly what they were! And he'd missed the coach for the kids school trip due to stupid traffic and so had been really upset that he'd caused the kids to miss their trip (he drove them to the first place they were supposed to be going to and met up with the school!).

But the appointment was more than fine though I seem to spend my time after appointments there leant up against walls trying not to fall down.

This was the FB update I made on my return:

And at today's hospital visit we discovered that just flicking my eyes from side to side can make me sweat and feel like I'm going to hurl! I have a pronounced eye wobble at the corners (it had a name I can't remember) so they are going with gaze instability and I have exercises to do which will make me feel sick and there is a slight possibility of a crystal dislodged in my ear - seriously - who knew we had ear crystals?

Couldn't do all the tests because oh my god dizzy-vertigo-pain! But on the plus side this is fixable! Just going to take a while. And also this is all kind of normal head bang stuff which is a relief!

The physio asked lots of questions which kind of hit the nail on the head - near misses whilst crossing the road, struggling with supermarkets, crashing into people in crowds, motion sickness in cars and whilst trying to watch films and play computer games, being uncoordinated ie the landscape is not quiet where I expect it to be.

Part of the issue is that though I can tell this is different from my chronic labrynthitis I didn't really register it as proper dizziness and feeling sick because that has been how things are a lot of the time anyway (inflamed middle ear that crops up as a side effect of the glandular fever I had in my first year at uni).

So they think it is mostly gaze instability - I assume that is to do with knocking my optics out initially in the fall? My eyes can't track thing properly and as creatures that rely on hunting this upsets our brains and mine is desperately trying to compensate which makes me really tired when I come a cross lots of information/visual stimuli. That's why reading makes me feel like I am falling, why the travelators make wobble, why railings drain my ability to walk. And worse it means you are likely not to notice things... like the damn van that all most splatted me the other day - how I could have missed it in it's enourmousness I don't know - but I did.

There is a chance of a loose crystal in my ear but they think it unlikely but we couldn't do my balance stuff because I was feeling sick (plus it hurt - I know weird! Moving your eyes shouldn't hurt).

On the grrr side it is going to take weeks/months to sort the eyes and the same then for the ears if it turns out not to all be visual. The exercises make me feel ill, they will lit take a minute a day.

On the good side - hey!!! This is fixable, treatable, sortable and no operations or drugs are involved!!! WHOOO Who!

No seriously that is amazing!

We are taking the treatment one thing at a time as I still need to be able to function as a person and if we are not careful I could end up at the hospital all the time (I HATE hospitals - really would rather not be anywhere near them - don't get me wrong I also love them for repeatedly saving my life but I do associate them with pain and loss).

Also last week I had another nurology appointment - this was the result of that (as posted on FB):

Apollogies for not letting people know how the appointment went - I was a tad tired! Basically there is a huge and positive improvement but still no end time - so still on rests etc... On the plus side most of the fatigue/brain drain appears to be part of an eye issue ie my eyes aren't focusing on things properly and there is stuff they can do about this 🙂 Physio is go a new set of treaments will begin soon, have to go back and have seizure etc... stuff looked at again even though I've not had one for a while ie since really getting to grips with the resting stuff. So tired still today that I had to be helped using the self check out, couldn't work out my money for the bus and tripped over my own feet. Also Cheltenham Costas failed at having GF savoury and I had to have cake for lunch :/

So it is all good which is why I am uber frustrated at not moving forward more quickly but I am trying to be ok with it all. Also the thing of the only things I can eat safely being cake when out is an issue as I've buggered up my sugar levels and need to sort that out too as that wont be helping ANYTHING.

Conclusion: things are improving, things have already improved pretty damn drastically but there is still a long slow path ahead and it is like picking up pieces of myself that I did not know were lost.