13 on the 13th (and a new Pope)

Well, Frank visited yesterday – 13 seizures in one day. Things had been going better but I think I have caught something, as apparently I was burning up to the touch, but felt freezing. Was quite funny looking back having “words” with Bert over duvet ownership! I was adamant that I wanted it, when I genuinely needed cooling down. Oh the joys of epilepsy and a fever!

I must admit, as a lapsed (and when I say lapsed, I mean REALLY lapsed) Catholic, I saw something last night I though I would never see in my lifetime. I have seen 4 Popes elected by the Conclave of Cardinals. Pope John Paul I, Pope John Paul II (who I had the pleasure of actually seeing in The Vatican when I was 16. He laid his hands on my head and I was really moved by it), Pope Benedict XVI, and now Pope Francis I. I was living in Malta when both Pope John Paul I and Pope John Paul II were elected by the Conclave, and it was a HUGE deal. I must admit, I was quite sad when he passed as even though he lays hands on so many people, he had laid his hands on MY head.

I never really though much about Pope Benedict XVI, but am actually looking forwards to what Pope Francis I can bring to the Catholic Church. Some of his thoughts go totally against my personal beliefs, but hey, were would we be in this world if everyone agreed?

He is happy for single Catholic mothers to have their babies baptised into the faith, a bold step for a Cardinal. He eschews all the pomp and circumstance for a simpler, more modest life and encourages his faithful to do the same. Although against gay marriage, he says that gay people should be treated with respect (thank YOU! – I am pretty sure Jesus would have done the same!). Should be an interesting few years to see what he can do with the mess the Church is in. Sorry about that, didn’t mean to go off on a religious tangent there!

Well, one of my “new” Uncles has arrived on the Isle of Man – I was supposed to go and meet them last night off the boat but was in no fit state, so Lizzy went with my Mum. Can’t wait to meet him and his wife today. Am beyond excited. Well, that is after the more mudane shopping etc that has to be done. I might feel like **** but I am going to get out and get some fresh air.

Cathy is doing really well. I have found a really lovely guy who has been holding my hand via email and she is a little under weight, so we have broken all the rules, and she has had a feed and not brought it back up (known in the snake keeping community as a regurge) and seems quite a happy little girl. I am going to up her feeding schedule from once every 7 days to once ever 5 days. She fed 6 days after her last feed before she came to me, and wolfed it down, so I want to get her to every 5 days asap, that is for sure!

Joshua, Lizzie and Myles have all had a hold of her now (before she was fed, as you have to leave them 48 hours to digest their dinner) so just for a laugh, here is a picture of Joshua looking at Cathy – think he would kill me if he knew I was doing this!

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Yes, my delightful 20 year old son giving Cathy the eye! (and yes, that is a Latin tattoo around my wrist)

So, onwards and upwards to the day – I am so excited about meeting my Uncle (after shopping and a supervised bath as I genuinely look like I have been dragged through a hedge backwards. Twice).

Hope everyone has a great day,

Sarah

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I could merrily strangle Frank…

Frank Fitzgerald that is, my body when it goes into it’s alter ego when I am having a seizure. Most of yesterday’s plans had to be modified.

First up, as the fits hit about 2pm, Cathy is going to have to wait for her meal today. I didn’t wake up properly until about 6pm from them and it was only to have a lovely meal the children had done for Bert and I, but we still watched The Hunger Games (think Battle Royale on acid, then you will get my drift).

Lizzie was on her own with me when I had the seizures, and once I started head banging the wall, she leaped in with my midazolam and that was it, Frank disappeared, no more fits. She did regale me with a funny story of how she tried to lug me round the bed to get me comfy, but truth be told, as long as my head is on a pillow, I have what the kids lovingly refer to as my “stinky Beth bear” (a little teddy that Bert bought me when I was in hospital last June and who wears a wedding dress/nightie that Bert made her, and the duvet, I am fine. She did a fantastic job, and wrote the time and type of fits down for Bert to put on my chart when he came home which was literally 5 minutes later as he had been dropping my Mum at work.

I did change Cathy’s water (duh, can’t leave any kind of snake without fresh water for over 24 hours) and Myles asked if he could watch as he hasn’t even seen her properly yet. Well, Madame didn’t disappoint. I put my hand in to get her water dish (I have had advice not to just top it up as a lot of them like to relieve themselves in their water and we wouldn’t see it). Realizing she was in tip top form, I gave Myles a shout as Bert had collected her a lovely flat rock to sit on, and Lizzie had given me 2 HUGE pieces of flint so we sterilized them to go into her vivarium yesterday by boiling them and then baking them in the oven to 120 celcius to rid them of any bacteria. I will point out that Bert got some stones for his fish tank too – that is the bargain for me having Cathy – he is getting a large 480 litre fish tank for the living room for compatible plecs and sharks, with a stone background.

So, water dish disinfected and refilled, Myles came up to see Cathy. I had popped her in her RUB so I could get her dirty substrate out and put her new “toys” in her vivarium so as I was popping her in, Myles came to have a stroke of her. He was really surprised as she didn’t feel how he expected her to at all. He wanted to take a picture of her so may I present his offering (of my iPhone, which doesn’t do macro shots too well!)

New Cathy Pic

We are both absolutely thrilled as she has what looks like a smiley face on her head (Myles noticed it first) and she had a good old taste of the air around him too. I asked him if he would like  hold, but he said he was happy just to give her a stroke for now. He was more than confident doing that, so I don’t want to push him at all. Oh, and please excuse my nightie in the background and be grateful I cropped my head out of the picture too!

So, with help off the forum I signed up to, we have identified her as a possible strawberry snow morph (colour). I don’t know whether or not to be thrilled or bloody annoyed to be honest. I thought I was getting a plain snow which, if you are into genetics is a double trait, whereas a strawberry snow is a selectively bred reptile, and can come with all the problems that are associated with selectively bred anythings. Fingers crossed she is just a snow.

One thing is for sure and that is that she needs feeding up, so with advice and help, I am upping her feeding schedule from one pinkie every 7 days to one every 5 until she sits properly on the chart where she should for her age and length. Although she is still in the “healthy” range, she is on the very low end of the scale and unlike dogs or cats, she can’t tap against the glass asking for more food!

I have made a lovely friend on the forum I signed up to, and he has been fantastic this week – no problem or question to trivial for him to answer as we have exchanged email addresses. It was him suggesting that I move her home round  a little bit given how settled and inquisitive she is this week.

I have to admit, I laughed at Bert when he told me that she was watching TV, but last night, as we settled down, sure as eggs is eggs, her head popped out of her favourite hide and we have worked out she can see half of the TV screen and there she was, either watching the shadows the TV threw or the actual TV. The glow from the laptop screen has alerted her again, and she is watching me type (quite disconcerting to say the least – I am SURE she knows I am talking about her!)

Anyway, I hope Frank doesn’t pay a visit today, and on that note shall bid the adieu

Sarah

To any Mums reading this blog..

Happy Mother’s Day! (OK, I realize that this is only going to work for UK Mums, but to any Mums reading, have a great day too).

Well, so far having a great day. My (step) son Myles and daughter Lizzie bought me the most gorgeous little Boofles key ring (mine says “My Keys” on it) so now has pride of place on my keyring, along with my Marvel keyring (yes, I am a geek, and care not one jot!). At least it is now big enough that I can’t lose it in my bag.

Apparently today later on Myles, Lizzie and I are going to watch The Hunger Games on Netflix together – that is the film that they have chosen for me. I really am looking forwards to it very much.

Cathy is settling in very well, today is feeding day so (with some trepidation) I am looking forwards to doing that too. Myles is going to help me as I think for my first go it is going to be a 2 person job. I have the following things to do:-

1 – Get her dinner out of the freezer

2 – Clean and disinfect her RUB (really useful box, where she is going to eat)

3 – Once her dinner is defrosted, pop Cathy in her RUB, and dangle her dinner in front of her.

4 – If Cathy doesn’t take her dinner, I am going to have to brain the pinkie (her dinner) and leave her for an hour.

5 – No dice on her eating? Back into her vivarium she goes.

6 – Whilst she is eating (or not), Myles and I are going to clean her vivarium out and move it around a little for her, as she is one inquisitive girl.

Yep, just because it is Mother’s Day doesn’t mean I am going to renege on my responsibilities as a Mum to Cathy.

Oh, I took a couple of pictures of her the other day, I woke up at 9pm to find Bert the other side of the bedroom glaring at Cathy’s viv. I shall explain further, aided by pictures of course…

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THIS is apparently Cathy eyeballing Bert. Oh yeah!

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And THIS is her watching Wheeler Dealers. Honestly, they are verbatim the words that came out of Bert’s mouth!

Slight case of paranoia? Methinks so!

So, I am off to finish watching one of the Bring It On films with Lizzie. The things a Mum does!

It was 5.30am yesterday, so just a little 5.15am post today!

Well, today is D Day. Actually, I was just thinking how that came to be used in our vernacular. I use it quite often, and genuinely mean no disrespect to those that fought. I think I should reign it in a little thinking about it.

Today, I can go and get Catherine Earnshaw (already shortened to Cathy). The shop sent me her feeding and shedding records last night, and the last time I visited her, they got me to rub some kitchen paper on my hands and face so they could put it in a sealed bag and give it to her 24 hours after she had fed and apparently she has chosen to digest on said crumpled piece of paper half in and half out of a loo roll instead of her coconut shell where she would normally digest.

I have to wait until 12pm to go and get her but that is no problem as we have a few jobs that we need to do first. You know, just the normal thing like sending elephant’s feet in the post (eew, eew and thrice eew – I hasten to add they are from when it was legal to do s0). Fortunately, we are also going to get Myles a new phone so he can keep in touch with Sophie as his contract is nearly up and a new pair of jeans. Also brain bleach for me for the elephant’s feet.

Oh, Sophie sounds like a total darling. She sent me a friend request on Facebook last night and we had a little natter via PM and she is a total doll. I told her that when she is ready, to come and see us and apparently she had been not dreading coming to meet us, but nervous and I had taken that away in one message. She is coming to see us this weekend. She has told me she is shy until she gets to know people but by the way we were nattering via PM, I think she might be over the shy bit already with me. I am so looking forwards to seeing her.

Bloody Frank paid a visit yesterday when we were round at my Mum’s house sorting the bloody feet out. All I remember is being really tired and asking if I could put my head down and next thing I remember is Bert waking me up. Apparently I had had a series of simple partial seizures, followed by 4 complex partial seizures. And do I remember any of them? Nope! I was actually quite surprised at the amount of people who do have epilepsy in the public eye.

So, today is going to consist of embracing some form of personal hygiene, getting rid of the bloody feet (I have made Bert keep them in the car – over my dead body were they coming in the house), popping into town to get Myles some jeans and a couple of other bits and bobs,  and finally, after a whole 5 days that seemed like 5 months wait – getting Cathy and bringing her home. Oh ffs, here I go with the Wuthering Heights quotes agian! I suppose I have asked for it calling her Catherine Earnshaw.

I joined a very welcoming and informative forum on corn snakes and they have told me that although she is going to need a week to settle in, it is perfectly permissible to take some photographs of her when I am putting her in her new home as long as the flash on my camera is off – yay for buying bridge!

So, with what is possibly the weirdest list of things to do today (post elephant’s feet and get snake), I shall say farewell.

Sarah

Just a little 5.30am post..

Ok, seeings as how I have been showing off a little with my new found ability to both add links and put pictures in a post, this is just going to be a plain old boring one, a quick catch up on what has been going on.

The carbamazapine is building up in my system at an alarming rate, so much so that typing is not the easiest (due to a slight case of double vision) so thank you safari for you in line spell check!

Myles has his first official girlfriend! It is “FaceBook” official, and she put it up, not him. I have to say, she is stunningly gorgeous – he has done so well there. He is going to bring her round to meet us in the next couple of weeks – I can’t wait as she sounds like a lovely young lady.

On the subject of Myles’ girlfriend, bless her, she thought that she had upset Myles last weekend. They were all at another friends’ house discussing what they were getting their Mums for Mothering Sunday (for us, it is this Sunday).

Now I know what I am getting – I asked Myles and Lottie to pick a film for me and we would watch it together downstairs (this might sound odd, but I spend most of my spare time in bed as it is safest for me), so he was telling Sophie (his new girlfriend) this. I don’t want cards or flowers, the fact that they want to spend time with me is enough. Then Myles made an off the cuff remark that he would just get his real Mum a card and shove it in the post (she lives in another country to us). Well, poor Sophie thought she had upset Myles. This is all Myles relaying the story to me yesterday morning by the way.

She thought she had upset him and bless him, he started laughing (I did tell him he was a tinkerbell for doing that!). He explained that he had practically no relationship with his real Mum and that he and I are very close. I was a *tad* confused as to why poor Sophie would make not the mistake, but not understand the set up. Apparently, although Myles calls me Sarah to my face, when he is out of the house, he and all his friends call me Mum, i.e. he says that he had better call Mum and Dad just to let us know what is going on – you get the idea.

Considering his poor relationship with his real Mum, I actually take is as a compliment that he calls me Sarah, as he has explained to me that he has NO happy memories with her.

He does, however, have bragging rights now. He is the only one of his friends whose “parents” are married. ALL of his friends have to choose between where they go home to at night – it really does make me sad. It does, however, make Myles rather smug in a good way!

Myles and I have what we call our “deep and meaningfuls” – our huge conversations that go on for hours. When I first started back in a relationship with his Dad, he dropped a bombshell on me. He told me that if he could have picked a girlfriend for his Dad, he would have picked me. I am not going to lie, I might have leaked some tears at that one – it was such an unexpected and beautiful thing to say for a young man who was 12 at the time. Gah! I can’t believe he is going to be 16 this year! He loves hearing stories about his Dad when he was younger, and I love telling them too! I think like any child or young adult, they forget that their parents had a life before they came along, so he loves plugging the gaps. I actually have known his Mum too since we were both 13. I didn’t like her then, and certainly don’t like her now but never bad mouth her to any of our children. Bert is the only person that gets any feedback on how I am feeling about how she treats Myles.

I asked him if he wanted to get his Mum a Mother’s Day card, and as we were going to town, he just asked me to pick one up for her. He was very specific that it wasn’t to be too over the top, just something simple and not slushy. So, at the grand price of 89p – one bought and put in the post.

So, today. I have a pile of washing I want to pop away, I have a pampering session and then Bert and I are going shopping, THEN I can come home and call the breeder to see if Cathy is happy and I can pick her up tomorrow!

Sarah

Last Sunday afternoon’s wheel in Douglas, because I can’t sleep

Well, it looks like the new drugs might have kicked in a little earlier than I could have dreamed for – I had a visit off Frank last night, but they were nowhere near as violent as they have been, and I came round a lot easier. Downside is, I can’t sleep and seem to have got a little confidence to post some more of my pictures up, so, for your perusal, a selection of pictures I took last Sunday. They were taken up Marine Drive and Douglas Head in the Isle of Man.

Taken on a Fujifilm FinePix S4400, run through Aviary and TitleFx, as per usual.

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This is as far South as you can go by car on Marine Drive now, looking towards Keristal and Port Soderick.

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You can see the remnants of a landslide we had recently – given how wet February was I was surprised it wasn’t worse.

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Proper view of the landslide.

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Quick peek North towards the Marine Drive archway at Douglas Head

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This is the rock formation it its original rotation. Up Douglas Head and Marine Drive there is mainly slate, granite and limestone. It gives the most stunning natural patterns and formations is quite breathtaking.

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Not particularly interesting, but it was to me.

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Steps up to a long gone farm house.

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Again, the rocks in their original orientation – no messing round from me on this front at all – nature did it all for me.

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And that is 3 strikes for nature…

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The top of the original Victorian archway to Marine Drive – I have cropped out all the road works and speed signs as I thought they spoiled it.

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Sir William Hillary – founder of the RNLI.

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I have enjoyed putting these up, it is Wednesday now isn’t it? 2 more sleeps to getting Cathy!! I am ridiculously excited about her arrival! I keep looking at her home, all ready for her and not with her in it. She had better chow down today or I will be having words with her when she gets home!

Lizzie had her ears pierced for the 3rd time yesterday, and now Myles wants his done, so guess were we are going when he goes on study leave – oh yeah, to get his left ear lobe done.

Joshua has got a new job – he starts today and I am thrilled. I think it is exactly what he needs. Even with everything that has been going on, it wasn’t his fault he was made redundant – cutbacks have that nasty side effect. So, he has got a job in a garage and I am over the moon for him.

Ok, not going to lie – I bought a Mac magazine yesterday and I am dying to read it so I shall bid thee adieu for now,

Sarah

 

To put it bluntly, darnation!

To quote Emily Lloyd in the 1987 film “Wish You Were Here” – bloody, bugger, bastard, bum! As you know, I went to go and get the elusive corn snake yesterday but came home empty handed.

She hadn’t fed and quite rightly, the breeder wasn’t happy to let her go until she had. So, he is going to feed her on Wednesday for me, and I can go and get her on Friday.

Needless to say, I WILL be calling on Thursday to check that she has had her dinner!

I got a bit more information on her – although she is being sold as an albino lavender, she is actually a snow lavender morph and is going to be a gorgeous colour when she is mature. Bert has already put snake steaks on the menu for 4 years time – hmm! Think we might be having words come then!

Don’t get me wrong, I was beyond disappointed, but I want a happy, healthy girl when she comes home. So, friday is now the big day.

I should have known that something would go wrong as I have had the most fantastic news. I had my weekly epilepsy MOT at my GP’s surgery yesterday and if anyone has been following my epilepsy related posts, you will know that the combination of medication that I have been on is NOT working. Last week I had 64 seizures and managed to acquire all kinds of new bruises.

I think I had a very prolonged simple partial seizure too, that lasted over about 3 days mid week as I literally had (to quote Lloyd Cole) a lost weekend but it was mid week.

So in I went for my appointment and as per usual, looked as bad as I usually do. I have actually refused to see my current neurologist again as it really isn’t working for me and Bert doesn’t want me to see her again either. Fortunately my GP, Dr Albiston is in agreement so I am currently neruologistless!

THIS has turned out for the best, as for quite some time I have been on a drug called sodium valporate (in the form of Epilim Chrono) and it obviously hasn’t been working. Before I became ill, I was stable on a drug called carbamazapine for 21 years. Now, as Dr Flake (ex neurologist) wanted me to stay off the carbamazapine for reasons best known to herself (when asked, her response was, and I quote verbatim “because I say so”) but Dr Albiston was in disagreement with her as he had managed my epilepsy very successfully himself and was put out to say the least.

Just a quick aside, each week that we go to see Dr Albiston, Bert takes a full record of my seizures for him and as I have been coming off the Epilim Chrono, the seizures have been going up and up. When I was on the full dose, I averaged out about 30 fits a week, but with the neurologist wanting me to drop off the medication, the fits have doubled, and then some.

So, Dr Albiston took one look at my latest record, glanced over my new bruises and quite literally had the “sod it’ written over his face. Yep, I am back on carbamazapine as of last night!!

Normally, I would have to titrate up to my old dose doing it at home, or to go straight back to my old dose do it in hospital, but after the respite fiasco, Dr Albiston has so much faith in Bert that as of last night I went straight back on my old dosage.

Don’t get me wrong – carbamazapine isn’t the nicest of medications to take. It has a rather individual taste to it and I can feel it working it’s way round my system. If this post is a little disjointed, that is why. My head feels a little “wooly’ but I know that will go in a couple of weeks. I used to bitch and whine about taking it but NEVER again will I do so. I am not ashamed to say that I cried when I picked my prescription up, they were tears of absolute joy. I handed over the remnants of the Epilim Chrono with indecent haste too!

So, one very happy Sarah here! Life is looking rather good from where I am sat right now (if you like the literal – on the bed watching BBC Breakfast news with Bert playing games on Facebook!). I am back on the medication I want, I have a pampering session on Thursday, fingers crossed I can pick Cathy up on Friday and we will take it from there!

So, for once, not a whinge in sight –

Sarah

VERY Late Valentine’s Day entry..

Just a short entry today – but something I had completely forgotten! Bert and I don’t celebrate Valentine’s Day. I don’t need Hallmark to tell me what day of the year I can tell him how much I love him. I think it also raises expectations, causes arguments up and down the land and makes single people feel rather alone.

The one thing I will point out is that Saint Valentine is the patron saint of Epilepsy, so I thought that shouldn’t go unacknowledged.

On the 14th of February I woke about 4am as is per usual, and at 6am put on the BBC Breakfast news (Bert doesn’t mind as long as the TV doesn’t go on before that). They were doing the usual Valentine’s Day schmaltz but asked people to email in with their proposal stories.

Now, I genuinely can’t remember if I have alluded as to how Bert “proposed” to me or not, but to cut a long story short, on the 26th of August 2011 we woke up one morning and announced that we were getting married! So, off we went to town, bought a ring and he put it on my finger in the multi storey car park. Yep, that was it!!

So, being the devil that I am, I emailed in with our story, adding that we don’t celebrate Valentine’s Day and I actually wouldn’t have had it any other way. I then didn’t give it another thought….

As seems to be the programming on BBC Breakfast news, they keep the lighter stories until the end, and had brought in a relationship counsellor to talk about Valentine’s Day, the implications, proposals etc.

That morning had our two favourite presenters on, Charlie Stait and Susannah Reid. So, they bring out the proposal emails and Susannah launches into one about a couple whose husband to be had chartered a plane and flown over her favourite Church and had laid out “Will you marry me?” in flowers in the churchyard! Her face could barely contain her distain and Charlie was chuckling away.

THEN.. (and I think you can see where this one is going), Charlie read out an email from Sarah, saying that her husband to be had woke up one morning, announced that they were going to get married….. yep! They read out my email to them! Susannah was killing herself laughing and quipped “my kind of proposal” and even the relationship counsellor was trying his hardest not to laugh.

It took Bert a few seconds to cotton on as to what was going on (thank god for Sky +) and he was absolutely thrilled! It thought I might be in the dog house, but when he saw the presenter’s reactions he was absolutely made up and spent the rest of the day with the biggest smile on his face I have seen in a long time.

I am SO going to have to up the ante next year! Gifts we may not do, but I think we might just have started something here…..

Sarah

Had a bit of a surprise today..

As anyone who ready my blog will know, I am a wheelchair user and have uncontrolled epilepsy. Just a quick aside from today’s post, I outdid myself completely yesterday as seizures go. I had one at the top of the stairs, cartwheeled over and landed in a heap at the bottom! I genuinely wish I could have caught it on camera as I am pretty sure it would have been hillarious to see! Slight problem though, I am now the proud owner of a delightful selection of new bruises, including a skinned shin and yep, dislocated my shoulder again. Thankfully Bert has got popping it back in off to a fine art.

Anyway, on to the lovely surprise I had today. As my activities are limited to say the least, I treated myself to a new camera last month, a Fujifilm Finepix S4400 Bridge camera. I had only had a ‘point and click’ up until then (Fujifilm again, I like the functionality on them) and am in no way ready for a full on DSLR yet.

So, I have been taking pictures of things that interest me – mainly the sea, rock formations, generally nothing man made. I have been posting them on Facebook just for my own amusement but was absolutely stunned a couple of days ago. On my friends list I have a gent who is a professional photographer. Not the kind that does studio pics, but someone that companies hire to do proper photo shoots and fly him out to work for them. He sent me a PM and actually gave me some rather surprising feedback on the pictures that I had been posting.

Although they are very rough and ready compared to what he is capable of, he told me that he thought I had a bit of a natural talent for it! Now, I have to be honest and was a little skeptical so I asked his brother in law if he was just being kind, knowing that I hadn’t been well, but apparently not, he had mentioned to him that he thought with practice and time, it is something that I could be proud to put my name to. He gave me some very good advice too – to watermark anything I put on the internet, so I have been since he mentioned it.

I didn’t really think much more of it other than feeling rather chuffed and in truth, a bit smug until today when I posted up a bunch of pictures I had taken yesterday when I was out. I chose yesterday to do something as it is the 5 year anniversary of when my back decided to pack up on me and I wanted to do something nice to mark the occasion, not wallow in self pity even though that was the overriding emotion until I got out of the house!

I got an invite to a closed Facebook group for photographers and recognised more than 10 of the members whose work I have admired for some time. A lot of these gents and ladies work with 35mm film exclusively but I can’t afford to do that, so even knowing that I am only able to offer digital photography they have been very welcoming, and surprisingly supportive of my meagre offerings so far. And yet I STILL can’t work out how to put a picture into my blog!!! Definite end user issues there. If anyone can help me with that one please could you message me about how to do it, I really would be grateful.

So yes, a surprising couple of days that have distracted me from the drama that has been flowing through the house.

On a more positive note, Joshua has applied for 3 jobs after being made redundant the other day, Lizzie is feeling much better and is at work, Myles had an absolute blast at a friend’s house last night – apparently it was ‘film night’ and they all had a great time. Haven’t heard from Leigh, so we take it he is fine and to keep Bert sane, I am confined to bed today to try and heal a bit. Think it is going to take longer than a day though!

Sarah

I would like to introduce you to Frank

In the words of Staind’, “It’s Been a While”. Yep, hello sadly neglected blog again. Wow has it been an interesting few weeks. Just a heads up, it is going to be a long post so if you are not up for it, I would leave it until you have read the rest of the internet!

I finally made it into respite for a week. Well, I say a week but managed 5 nights. I was up for staying the full 7 but Bert was having none of it. I came out of there black and blue. I was put in the wrong room where none of the staff could see me fitting and if it wasn’t for a lovely lady in the bay with me I probably wouldn’t have the brain function to turn on a laptop, let alone write a blog. I went to school with her son and she remembered me but was in after a joint replacement for rehabilitation, not to look after me. On the 4th night she slept with her hearing aids in so she could hear if I went into a seizure and I knew something had to give, so I came home early. Apart from the fact that I was black and blue from bashing my head and arms against the metal bars on the bed, Bert wasn’t happy at all.

Don’t get me wrong, the staff were amazing when they got to me, and my seizures have changed considerably recently. I now have a new repertoire of seizure behaviour. With each reduction of the Epilim Chrono, they have changed and are now incredibly violent. I pull my hair out, hit myself on the head, head but the floor, rip pillows, bite anything I can get my mouth near – you name it. That is why we have given them a name, it being Frank Fitzgerald! He is quite a nasty character and doesn’t behave very well! Joking aside, I am getting exhausted from it all.

Whilst I was in hospital, we found out that my eldest, Joshua, has been abusing prescription medication again. He has purposely making appointments with Drs that aren’t our family one and literally flirting his way into getting codeine (his drug of choice) and tramadol. I came home a week last Monday and I couldn’t believe the state of him – it was unreal. He has been signed off work, and was actually made redundant yesterday. Yup – we are nearly at rock bottom. I am so frightened for him as my father had an addictive personality but was an alcoholic. Just to give you an idea as to the depths of his problem, he was given a drug called Codapar (pure codeine without the paracetamol in it), 50 tablets and took them in 36 hours. He then slept for 4 days. He has tried breaking into my controlled medication box, so we have removed the majority of the medication out of the house and a family member is looking after them for me. I have had to inform the police as they have to know where any controlled drugs are kept. Last Friday I was that frightened by what he had taken (60 tramadol in 2 days) I called up to speak to a GP. Now, I KNOW that it states on his medical records that he is not to be given any kind of medication that has addictive possibilities but unlucky for her, the Dr that rang back was the one that wrote the prescriptions out.

Put it this way – he was in A&E within 2 hours hooked up to a heart monitor and being seen by the Mental Health Crisis Team. The Dr was mortified as she hadn’t read his records properly. After seeing our family Doctor yesterday, I would have given anything to be a fly on the wall when he confronted her over it. The words “not” and “impressed” were used several times over!

One good thing is that he has now been given the correct medication, a drug to treat schizophrenia. Yep, it really is that bad at the moment. He has love, support, food, warmth and shelter. The rest he is going to have to work on with our help. Fortunately his girlfriend’s family have been fantastic and he has been staying there as, much as it pains me to say so, I can’t cope with him at the moment.

Here you go – an example of how off his face he has been. A week last Wednesday I went into a rather violent seizure. I had been up to town with Lizzie and Myles and we had had a great day but it was chucking it down and when I got home I was very stiff from being in the chair and wet through. I came up the stairs wanting to get into something dry but he wouldn’t leave me alone, even though I asked him twice. Bert was making a warm drink and Lizzie was popping in and out to make sure I was ok. One of the problems was that we had to pick a prescription up of controlled drugs on the way home and I was feeling rather anxious being alone in my bedroom with him and the large amount of medication. I know he wouldn’t hurt me, but he is a huge lad and I wouldn’t stand a chance if he had made a lunge for them. Anyway, twice I asked him to leave and twice he didn’t (I just wanted to get warm and dry) but I could tell he was high as his eyes were nearly black, hardly any brown showing.

Frank decided to put in an appearance right at that moment and he just let me hit the floor. Fortunately Bert, Lizzie and Myles heard me hit the floor and came rushing in, only to find 18 stone of high as a kite son pinning me down face first mid seizure. Obviously I am recounting second hand as I don’t remember but he dislocated my shoulder by doing so and it hasn’t been right since. Once I had come round enough to realize what was going on, I got Bert to pop it back in as I know the longer that you leave it the longer it can take to heal. Yep – that was interesting. Joshua just got up and walked out of the room after damaging my shoulder texting away and that was the last we saw of him for a couple of days.

Honestly, you couldn’t make this shit up if you tried!!! It also turned out (I found out yesterday at my Drs appointment) that he had damaged the cartilage in my knee at the same time. I am on that many pain medications it takes a lot for me to get what I call “breakthrough” pain, but for the first time in longer than I would care to admit I cried with the pain. Don’t get me wrong, I will cry at a film, book, hell, even the Kleenex ad with Tom Hardy but never with pain but this has taken it to a new level.

Anyway, on to my Drs appointment yesterday. Yesterday was going to be the big one – the complete coming off Epilim Chrono as directed by the Neurologist from hell. My GP took one look at me and put his foot down – and I cried with relief that I can stay on what I am on. He couldn’t believe how bad the seizures had got and also had the added “bonus” of the nursing staff’s assessment of what had been going on when I was in respite.

I have requested a second opinion – and have refused to go back to said Neurologist as her ideas of how to treat me are quite literally driving me insane. To say my GP is pleased is a slight understatement!

So much to say still! On to some brighter things. Lizzie is going on holiday to Malta with my Mum next month – I am absolutely thrilled that she is going to get a break from it all. The only holiday that my children have ever had has been caravan holidays in North Wales and I am just so pleased that she is going to get away from it all for a week. Her OCD is much better, though her migraines aren’t too good at the moment. I think a week in the sun away from it all will do her the power of good.

Myles turned round and shocked the socks off us all a few weeks ago – he is going to Prom!! He was going with a group of his male friends and was really looking forwards to it. So he decided to shock the pants off us too a week later by announcing that he had a date for the Prom! When I first met him 3 years ago, he was a tiny ball of angriness who would barely speak and was full of aggression due to the damage done by his Mother’s second husband. Today, he stands the tallest man in the house, full of confidence with the girls throwing themselves at him. I couldn’t be more proud. Bert is convinced that it is all my doing – I disagree. 99% of it is Myles’ doing, Bert and I can take half a percent each for the rest. All he needed was a little nurturing and a couple of pointers in the right direction, that is all. I couldn’t be more proud of him. It honestly feels like he is my biological son. I have read all sorts of things about step parenting but I think it is one thing that I can actually do, and do right.

ARGH! Forgot! JUST to add insult to injury (quite literally), Bert said I could get my corn snake this month. But alas no, Joshua is not in a financial position to pay his housekeeping due to being off his rocker and not handing in his paperwork for Incapacity Benefit so no corn snake for Sarah this month! I shall have to wait – and boy I am counting down the days! I have even got ideas for names, how sad is that?!!

So, to summarise – Joshua is quite seriously ill mentally, Lizzie is coping with her OCD really well, Myles is going from strength to strength in every way, Leigh is still debating whether or not to come back permanently to live and Bert is still the love of my life. Without him, we would fall apart.

Sarah