An afternoon photography post…

As a treat, Bert took me out with my trusty little Fujifilm FinePix S4400 bridge camera. Now, I am going to be bold and post my pictures as they came out. No saturation fiddling, no cropping, no anything. Just raw off the memory card.

When we left the house it had just started to snow, and quite a squall it was

                                                                      

It had been snowing on and off all day, but hadn’t stuck so we took the chance and went out to see what we could find. All the pictures are taken in the Isle of Man, more specifically the North, Ramsey to start with and ending up at Guthrie’s Memorial. We were quite hopeful for a few decent snaps, so Bert saddled up too with his Cannon DSLR.

Houston, we have a problem – no way is my wheelchair going to go up there. Such a shame as there was some gorgeous icicles up there. Never mind, there was plenty of gorgeous stuff to photograph as it was.

                                                                     

The beauty in nature never ceases to take my breath away.

                                                                      

Bert was busy climbing up the hillside like a mountain goat getting some fantastic pictures as we have had quite a cold snap of all the icicles that had formed on the trees, and I was really looking forwards to seeing them, when he sprang the most romantic (and he would kill me for saying that!) gesture on me. Let me show you:-

                                                                      

He brought the icicle encrusted boughs that he found lying on the ground to me! I was absolutely blown away by the gesture, and may have leaked a couple of very happy tears.

I was so enthralled by what he had done, I had failed to noticed that it had stopped snowing, which brought different light to photograph in.

clear skies with new shadows                

So, we thought we would move up the Mountain Road to Guthrie’s Memorial to take some more photographs, the views were again, breathtaking, but on a different level…

                                                                      

With my back to the Irish Sea, I got up close and personal with some icicles of my very own. I took a lot more, but these are my favourite. I turned round to my favourite sight in the world. It doesn’t matter if I have only been to our main town Douglas, or have been on a 2 week holiday, this is the sight that takes my breath away every time I see it:-

and so does this one too……..                

Now this is just a small selection of my afternoon out that started off with a heavy snow squall and ended up with these final pictures. And all of it done in about three quarters of an hour too. I had a fantastic time, and I hope you enjoy my little offering today. Just photos, and not very good ones at that, but ones that I love and I hope you have too. If it wasn’t for the wheelchair, I could have got such different ones, but it is sometimes nice to be able to show you life from my perspective.

Sarah

Somebody that I would like to introduce you to…..

Miss Catherine Earnshaw has finally come home! I called at 12pm as requested, and yup – she was good to go.

Please don’t think I was squeezing her to death, my fingers are that colour permanently due to the wheelchair use. We have now established, with the help of the corn snake forum, that she is indeed a snow, and maybe a strawberry snow (apparently the markings on her head are unusual for a plain snow corn snake)

Getting her home was hillarious – if I didn’t know better I would swear she was like a dog, watching the world go by for about 10 minutes – then she got a little cold so we turned the heating up in the car and I put my hand in the corner of her RUB (really useful box – oh yeah, I am getting the lingo already) and she happily coiled up in there.

I have to leave her to settle in for a week without getting her out for playtime, but it is worth holding out on, as it will hopefully make for a happy girl, and much less likely to be skittish which is the last thing I need – a bloody snake that can grow up to 6′ in length that gets skittish on me!

She is *just* going into blue which is why we reckon she refused her food last Sunday, but she is more than making herself at home. She decided to rub her head against the glass of her vivarium which elicited a rather amusing response from Bert! Now, if you can imagine you are sat on the bed, I sleep on the left hand side and that is nearest the wall, Bert on the right nearest the door. Bert put a shelf up for me at the perfect height so that when I sit or prop myself up in bed, I can see her. Anyway, she rubbed her head against the glass and Bert nearly jumped out of his skin! He was sat at the dressing table on the other side of the room, but had spun round on the chair and had his legs up on the bed. I really wish I had had the sense to grab my phone and record his reaction!

So, in retaliation, he is now looking up stuff for the tropical fish tank that he is acquiring in the near future. Well, he already has one but apparently me getting Cathy means he can have another. Got to love husband logic! Well, he caved in on Cathy – I know damn well I will cave in on another fish tank. One thing though – no bloody guppies! They breed at an alarming rate, no matter how beautiful they are.

So, one Cathy home and settling in, one Bert now thinking letting me get her NOT his best idea, and I have just handed my debit card over for him to get something fish tank related off the internet. Yes, it is a fact – we are both insane!

Sarah

Tomorrow is the big day!

So, yesterday Bert and I went to the pet shop to price up me getting a corn snake. I duly looked, read, and spent about an hour doing the deed and came up with the following

Terrarium kit (heating inclusive) – £89
Haven furniture for shedding – £13
Coconut dome for dry hiding – £3
HEAVY water bowl – £6.50
Aspen bedding – £10
Sphagnum moss (for shedding) – £7
Food (don’t ask unless you REALLY want to know) – £4 (for 3 months supply)
Feeding tongs – £8.50
For want of a better word, poo remover – £2

so, without the snake, just to set it up, would cost £143. I was rather impressed at that. Now, as you know I was just pricing it up and Bert could see how excited I was getting so unbeknownst to me, went and got the reptile expert to come over and speak to me. She asked to see the list I had made, asked about my budget etc, basically interviewed me and….. I passed! I was thoroughly impressed when she told me that they refuse to sell more snakes than they actually do sell due to prospective first time owners not knowing what they are letting themselves in for. Although they are pretty little things when they are the length of a 12″ ruler, they can live up to 20 years in captivity and have been known to hit 5′ in length regularly, sometimes even 6′ depending on the husbandry.

Little did I know, that Bert had already told her I was allowed one (he had phoned the housing board and we have verbal approval) so we got a trolley and popped all the stuff into it.

THEN the big moment came – time to pick a pet who hopefully will be with me for 20 years. Now, you don’t just waltz in and buy the terrarium, bits and bobs and snake in one go – you have to set the terrarium up and go back 48 hours later to get your chosen snake as the temperature is very important.

The lovely reptile expert (Steph) brought several corn snakes down for me to see – of course they are up high where I can’t see whilst sat in Lilith! I decided that I would like a female as they are more docile, and don’t become, how to put this delicately, aroused, unless put with a male snake. There were several different morphs of corn snake but one stood out head and shoulders above the rest. She is an albino lavender and I am going to go and pick her up tomorrow. When Steph brought her down to see me, she opened up the box and brought her out, as she had done with the previous ones, but this lady just had a look in her eye. She lifted her head up and slithered into Steph’s hands. When Steph brought her closer to me, she literally flung herself at me, so with a quick squirt of antibac hand gel, I was allowed to hold her. She held her head up high and looked me straight in the eye. Then she gracefully curved round my fingers and wrist, so delicately it was gorgeous to see. She took a little trip up my cardigan sleeve to see what was going on up there and Steph was just about to get her, when I said it was fine with me as long as it was fine with her, and she let us be for a while longer. She was really surprised at how at ease I was with her until I explained that my grandmother on my father’s side of the family used to have an 8′ boa constrictor as a pet and would regularly cook tea with it draped round her neck!

At this point I hadn’t realized but a few of the other staff had come over to see what was going on – apparently snakes don’t often pick their owners, but I had well and truly been singled out by this gorgeous lady. She has seduced me completely. So, after having a good ten minutes of time with her, I reluctantly put her back, but knowing I could pick her up tomorrow.

So, tomorrow, our house is welcoming its newest arrival. Miss Catherine Earnshaw. She is spirited, inquisitive and above all, different. Just like me! I will, however, be calling her Cathy!

It was very sad putting her back in her little box, but Bert and I bought her new home, furniture and food and it is set up ready, heating up on track, for her arrival tomorrow. I was VERY impressed that the pet store required us to set up Cathy’s home in advance, and we have to take a picture of the thermometer to show that it is at the required temperature before they will sell her to me, even though she is ‘reserved’ until tomorrow.

Today is feeding day at the pet store, so I won’t need to feed her until next Sunday, and it is going to push me to the brink of my self control not to mither her when I get her home, but I have read extensively, and all the sites on the internet say that a new juvenile corn snake should be left alone for its first week in its new home without handling. AAARRGGGHHH!! Going to sound like a 5 year old here but “I wanna play!”.

I will, however, point out that I am not going to – I do not want a distressed pet. I want a bright, happy Cathy who hopefully will live a very long and happy life with us.

So, until tomorrow afternoon whereby I will no doubt run out of superlatives, I shall sign off!

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

It has been an interesting few days…..

They say at times of crisis you find out who your real friends are. Wow have I learned this one. As I am sat here typing (on the new MacBook!) Bert is lying rather ill in bed, Joshua and his girlfriend are sleeping hangovers off, Elizabeth is out at work and Myles is flaked out after an all nighter on the XBox.

Well, that was my blog session cut short! Lizzie is now home from work as it was not worth staying open so I have just cut, dried and straightened her hair (no mean feat – it is nearly down to her waist and we are mixed race so had the straighteners on super strength!).

Joshua collared me for a natter too, he was in a rather strange mood, even by his standards. He was worried that I loved Myles more than him. I guess becoming a step parent does’t come with a handbook so I had to reassure him that I loved them both equally. I genuinely can’t say I love him more, as I genuinely love both of my step sons as if they were my own – hell, they have 2 half brothers that are nothing biologically to do with Bert or I but we have had them over on holiday and I love them too. To me, love doesn’t have to equal blood, it can occur naturally too.

Oh, and to top it all, my Mum has fallen out with me. Myles and Lizzie were sat in the living room the other night, Lizzie on her laptop and Myles on his Kindle both having a laugh and Joshua walked in. Now, Lizzie had her legs over Myles’, on top of a cushion as we have a corner suite and he took COMPLETE exception to it. Never mind that Bert had been in and out of the room all evening.

Well, off he went ranting to my Mum about it being inappropriate, blah, blah, blah and without even asking for another side of the story, my Mum took it upon herself to tell Lizzie that she shouldn’t have done it.

Talk about starting WW3. Lizzie is still inconsolable about it all and won’t spend time with Myles on her own, and god love him, Myles doesn’t know what he has done wrong (NOTHING).

To give you some perspective, even before I was engaged to Bert, Myles’ friends at school would comment that Lizzie was “pretty fit” and he would be all “wwww, she is my sister”. That is how they view each other, nothing more, nothing less. They would fight to the death for each other, and have the most fantastic sibling relationship. But no, my Mother decided she would listen to Joshua and stick her nose in.

I was that angry a couple of days ago, I called her and very calmly explained the situation, told her that I was upset that she hadn’t bothered to consult Bert or I in the process and I had found it disrespectful to us as parents. I did tell her I wasn’t falling out with her, but I said what needed to be said. So she has fallen out with me anyway. I have had 39 years of this so I am used to it. She shoved me in boarding school at the age of 8 so you will excuse me if I don’t particularly rate her parenting skills. I adore her, I really do, but THIS we could have done without.

Ah well, interlude over! Like I said, Bert isn’t well. We both have norovirus, but it is affecting him worse as a lot of the pain medication I take counter balances one of the nastier sides of the virus. Unfortunately he is totally washed out with it. He hasn’t been out of bed for 3 days and all he can keep down is water with some sugar in it.

I actually realised that outside of the immediate family, we have no one to ask for any help at all. They either don’t drive, don’t want to take responsibility for me (that I DO understand, given the seizures) or ‘busy’. For all his being a busy body Joshua has been to the shop today and his girlfriend is going to cook tea for them all tonight.

I have been feeling a bit low in mood recently, I think it is the change in medication and keep bursting into tears for no apparent reason, but Bert gave me good reason before. He was asleep and Joshua wanted to talk to me so I went into the living room for a natter and a cuppa with him. After about half an hour Bert came charging in barking at me as to why I didn’t let him know where I was. Now, I will put my hands up as I completely overreacted, but I burst into tears. I think it was more the fact that I knew he wasn’t well and was asleep when Joshua asked me to chat to him, so I just left him asleep and went down for a chat. I was so upset that he did it in front of Joshua and his girlfriend, I felt like a child myself.

Now I am painfully aware that my epilepsy has pushed everyone to the absolute brink of exhaustion, but I am going to request that my respite be brought forwards and ask for another of the neurologist’s demanded drops of medication in hospital (nowhere else will have me). I have only been married for 3 months, actually to the day and I have got my husband so exhausted he is shouting at me and is ill. I can barely forgive myself currently.

Lizzie has offered to reciprocate the hairdressing, so she is going to sit in with me whilst I have a bath (thank god we have a shower curtain!) and do my hair for me. Then we are going to sit and watch Pride and Prejudice – the one WITHOUT Colin Firth, totally overrated).

I just feel damned if I do, and damned if I don’t at the moment – the reverse Midas touch. Everything I touch seems to turn to shit. I am just so damned tired too, last week I had 61 seizures, and actually 18 the day before yesterday. Really had quite enough for now!

So, before I start up with the tears of self pity again, I shall bid thee adieu.

Sarah

Ever had the feeling you just can’t win?

This May, my brother in law Richard is getting married and has asked Bert to be best man. I am absolutely thrilled that he has, as without Richard, I would never have met Bert, and he has I have always had a huge platonic soft spot in my heart for him as, without him, as I have mentioned before, I would have gone under a very long time ago.

So, today has come as a bit of a surprise to me to say the least. Yesterday I hit over 40 seizures by the time night time ‘knock out drops’ for bed came. I didn’t sleep so well, due to Joshua and his other half falling up the stairs at quarter to 4 this morning and haven’t been able to get back to sleep. Who am I kidding, all this is besides the point.

So, Richard’s wedding. Bert best man, and I have got most of my outfit/makeup/plans in situ for the day. I am going to have to go in Lilith, so the dress is going to be stylish but discrete and I am going for the monochrome grey spectrum to go with my eyes! The bride to be had suggested blue, but it washes me out and having shown her daughter the dress I have chosen, we are good to go. I was going to buy it this week but our cooker decided to die, so next month it will be.

Anyway, Elizabeth and I have been pouring over the latest Avon brochure as we both need a few bits. Little did I know that whilst we were doing it, Bert was on the phone to Richard about the wedding.

Now, as it is Richard’s second wedding and I cannot be left unattended at any time, I had wrongly assumed that I would be going up first thing in the morning and getting ready with the gents as I do need a hand, going to the wedding with them and parking myself discretely in the corner, but still within sight of Bert.

I have a medication that I can take that will 99% guarantee that I won’t fit for 6 hours within taking it, so was going to have it just before the service (it is a civil ceremony, not a church wedding) which would see me through the meal afterwards, right up to popping our heads into the evening ‘do’ that Bert and I had previously agreed not to stay long at. Perfect I thought.

Apparently not. The bride to be doesn’t want me there with the men in the morning, and Richard wants Bert there the night before. Now, he KNOWS that nobody is in a position to take care of me overnight currently. My Mum is 70 and she can’t cope with 1 seizure, never mind the 40 odd I had yesterday, and I feel that it is too much responsibility to put on any of our children. Apart from that, the only night I have spent away from my husband was the night before our own wedding, and that didn’t go so well!

So I am happily sat with Elizabeth trawling the Avon brochure and Bert comes in with a smile saying that he had something to make me smile. All good so far. He and Richard had been talking about me and the wedding and came to some rather extreme conclusions. Bert is not going to be best man, Richard is going to ask another friend and that is it, case closed. No option for me to offer my opinion, come to some compromise, speak to Bridezilla or anything.

I know how much it means to Bert to be Richard’s best man, and to be truthful, how much it would mean to me too. BUT – no. All decided without me getting any say. I have offered to go into respite the night before, and get taken up in the morning – NO. I have offered to get my best friend who is more than capable of looking after me to come up with me just before the wedding with Joshua taking us up, and bringing my friend home – NO. I feel like I am banging my head against a brick wall.

The only option I can see is if I don’t go to the wedding at all, but Bert is refusing to go if I don’t. I really feel as though I have got my back up against the wall on this one.

Oh, and for the first time since we got married, Bert isn’t talking to me. Great. Just what I need. Going to stick my thinking cap on for this one for sure.

Sarah

Going to have to “Kick it in the ass”

To quote the late, great Kim Manners, I really am going to have to adopt his attitude. Although our illnesses are very different, by god he had the right mental attitude.

Well, Thursday night I took my first lowered dose of Epilim. As it is cumulative, I knew it would take a few days for any of the side effects to show up but last night they arrived. I had a prolonged simple partial seizure. Now, when I get them, I get ‘voices’. They are always very negative but as a trained nurse, I know deep down I am not going bonkers and that it is part of the process. This time they took a turn for the strange. Normally the voices are male, and what they say are very negative. I refuse to repeat or write down what they say as it is my way of not acknowledging them, and for taking them as what they are, part of a seizure.

Last night, one of them became identifiable to me. One has taken on the voice of my husband. There are always 3 of them, but this time, one became identifiable. Oh yeah, talk about creeping me out whilst I was trying to hold on to my last shred of sanity!! Bert was, as ever, amazing and really helped me through it.

So, I had my kockout drops to get to sleep and unfortunately woke at 2am this morning. WIDE awake!! So, I popped the computer on just to read as I wanted Bert to get back to sleep for a while. About 5.30am I got a wave of tiredness so popped the laptop down and went back to sleep. I felt Bert cuddle in, so that always helps me drift off very quickly.

Next thing I knew, I was lying on my back, the bedclothes everywhere and one rather worried looking husband looking down on me. Then I realized that I had the unmistakable taste of midazolam in my mouth. As I was coming out of status, and things started to drift back into mental focus he filled me in on what had happened.

I had been asleep about 20 minutes when I started fitting. Now, normally when I have a run of them, it is between 6 and 9, 11 tops. I had 27 seizures this morning. Yep, started the day off with a bang!! Normally I am good up until about 3pm but this one came out of nowhere.

So, today, I am going to be confined to my bed. I am allowed up and down the stairs on my bum, and if I go to the bottom of the house, I am going to have to use the wheelchair. Think it might just be me and Netflix for company as Bert has gone back to sleep for a well deserved rest.

So, at a quarter to 10 in the morning, on a seizure count of 27, I think I will bow out! Supernatural is going to get a hammering to keep me sane today too!

Sarah

Let it Be.

Well, hello 2013. Not quite the start I had in mind, but here we are anyway. I have never been one for celebrating – my idea of celebrating New Year’s Eve is by being asleep by 10pm.

It stems back to 1987. My grandmother died that year and December the 31st was her birthday so ever since then, it hasn’t been a day either my Mum or I wished to do anything other than remember her on. Only this (well, now last) year it took a turn for the worst.

I have held on to a secret for so long that I had not forgotten for one minute about it, but it had become so far boxed away in my brain that it almost seemed to belong to another person.

I am going to keep this brief, as I am exhausted, but I need to get this written down, as proof to myself, and hell, to use the American word, to get some form of closure.

December 31st 1991 something horrendous happened to me. Bearing in mind, I was 18, living alone as Bert had dumped me and I was NOT in a good place in my life. I lived in a grotty flat with a mattress on the floor in the bedroom, a mattress on the floor in the living room (no sofa) and just a cooker, kettle and portable TV. No chairs, no comforts. That was my life as I was making minimum wage waiting on and that just about covered my rent. I have even eaten cold beans out of the tin in the dark, but this isn’t what this entry is about- not trying to portray myself as a martyr here.

What I am about to write is incredibly difficult for me to do so as I only told Bert about it a few weeks ago as I could have gone a lifetime never telling him. BUT – my seizures have changed yet again, and I was terrified of it coming out when I was in the middle of a seizure.

Ok, back to December the 31st 1991, or should I say, more specifically, to when Bert dumped me. I tried and tried and tried to get him to talk to me when he did but he is as stubborn as I am and wouldn’t. I had something that I really did need to tell him. I was pregnant. I didn’t want his money or pity, I felt he had a right to know. As he wouldn’t speak to me, I kept it to myself and didn’t go and see a Doctor or anything. Yes, I was well and truly in denial. Lunchtime on December 31st 1991 I was violently sick, and whilst being sick, my waters went. My baby (I still can’t bring myself to use the word ours) was born spontaneously (as were both my other children, no labour or anything) on the bathroom floor. I knew something was wrong straight away. She was what we now call ‘born sleeping’, but in those days, it was called a stillbirth.

I was 18, scared witless, so I wrapped her up as best I could, ran to the phone box and called an ambulance. When they came to get us, I was hemorrhaging badly holding on so tight to this beautiful little girl with a gorgeous mop of blonde hair, but without a sign of life in her.

In the hospital, I was informed that the placenta had detached a couple of days previous and there was nothing that could have been done to save her, and that they would take care of the waste. Yep, they called my precious child waste.

The laws in the land at the time did class her as that, so I begged to be given her to be able to give her a decent send off. She was 31 weeks gone, and nowadays, that is more than viable, but as I was malnourished, I don’t think she ever stood a chance.

I asked them to weigh her for me, and she was 5lbs 1oz but there is no record of her. Nothing acknowledging her existence other than my memories and those of a particularly caring nurse, who went to the special care baby unit to get me a pretty babygro to put her in to go to the undertakers.

The undertakers took pity on me as I couldn’t afford anything, so they gave me a beautiful little white coffin for her, and let me hold her in it on the way up to the crematorium.

At the service, there was the 2 undertakers, the Reverand who married Bert and I, me and my daughter. Not another soul knew I was pregnant, (I have hidden all 3 until the last minute) so that was it.

The loneliness I felt at the time was overwhelming to say the least, but I had been given the chance to name my daughter, who had she lived, would have celebrated her 22nd birthday yesterday. I don’t write this blog under my own name, I write it under hers. Her name was Sarah Emily.

I couldn’t cope with a hymn at her funeral, so maybe the title of the post will give away my choice of music. The Beatles, Let it Be.

“When I find myself in times of trouble, mother Mary comes to me. Speaking words of wisdom, let it be”. I think it was a cry for help from me, and almost a prayer to Sarah that I would never forget her. This is the first time in 22 years I have been able to grieve for her and I know it is going to take a long time to do so, but I am prepared to do this.

I think I have just about reached my limit on what I can say for now, so, in loving memory of my beautiful, blonde tiny baby who would have been 22 yesterday, I just her to know that her Daddy now knows, but we are not telling her brothers or sister just yet. We will though.

My darling daughter who didn’t quite make it, I love you, just as much as my children that did make it. I will see you again soon sweetheart, and I can promise you, you WILL know how much I wanted you and loved you, even for the short hours I held you.