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

Advertisements

Fangirling

It is official, I am an Apple fangirl. I blame my son completely. Last summer, Joshua bought me an iPhone 4. I had been quite happy with my little Samsung BlackBerry wannabe, but he treated me to an iPhone 4 (got himself the iPhone 4S mind!)

I was a bit dubious at first, but within ohh, about 4 minutes of getting it up and running (bearing in mind, I had been running Safari and using iTunes on a Windows 7 laptop for some time) I was seduced, completely. It really is a thing of beauty!

So, fast forwards about 2 weeks and I accidentally find myself looking at iPads. What? I couldn’t help it! Now, they vary in price SO much I really did have some research to do so after much deliberation, decided on the iPad 2 (16GB if anyone is interested).

The main reason for getting it was because if I am sat in bed after a seizure I can’t stand the weight of a laptop on my knee and can’t use the right hand side of my body for quite some time, so for browsing, YouTube and the likes of SongPop, Words With Friends and email it was perfect. So yep, got that too.

Had a little browse on Amazon a few weeks ago and found a bluetooth keyboard for it that came in at £10 which surprised me as it had an average 4* out of 5 rating so I must admit, I did read all 100 odd reviews and thought for a tenner I had nothing to lose and ordered it – WOW. Absolutely fantastic.

Once charged, it was set up within minutes and I was exceptionally surprised at the speed at which the data transfer via bluetooth happened.

This is the one that I actually bought

So, obviously this got me thinking. My old and faithful Samsung RV510 has hit the floor so many times whilst I have been having a fit, it is starting to play up a bit. Nothing that isn’t fixable, but I do have a greater plan in my life which involves pursuing my love of education and writing and the poor old Samsung just isn’t up to it anymore.

I had a look in my savings, and had my heart set on a MacBook Pro Retina that was well and truly out of my price range – the one with the new flash drive instead of the solid state drive. I am not in need of a TB of storage but it was well and truly out of my price range so went up to the local store with every intention of coming home with this MacBook Pro

And, genuinely would have been ecstatic with that one. BUT – the shop had a sale on and I came away with the MacBook Pro of my dreams…..

Oh yeah – I was over the moon! I paid £1,000 for it and can’t believe that I am now the proud owner of a MacBook Pro Retina.

Now I didn’t get it from Amazon (it was just the best place to show the spec I got). I have wanted a mid to high spec computer for some time with flash rather than solid state drive so have taken the plunge.

I was chatting on Skype to my friends in the US yesterday and telling them what I had just purchased and apparently I have bought good! The only problem I could find (ahem!) was that all our USB flash drives are USB2. Well, that just won’t do so have a rather nice Sandisk 16GB USB3 flash memory stick on its way to me as we speak. Apparently I should be able to watch films without any lag off them (as the MacBook Pro Retina doesn’t come with built in DVD R/W which isn’t a problem for me as that isn’t what I have bought it for, considering I have a brand new PS3 for that purpose).

This is the little flash drive that I have gone for – I know there is a whole lot of arguments for and against Sandisk vs Kingston, but I prefer Sandisk

Just need to save up for goodies for the Thunderports!

All this is is coming full circle to where I am actually hoping that I am going to do something for the family.

I have had some really bad bouts of seizures recently and they are taking their toll on Bert. I am battered and bruised and have fallen up and down the stairs so many times in the past few weeks since the medication drop that I am exhausted, never mind the rest of the family. I spoke to my GP a few weeks ago about perhaps getting some day respite to give Bert and the family a break. Well, my GP looked into it for me and it turns out nobody will touch me with a bargepole, my needs are that complex.

I am going into respite, but the only place that will take me is our local hospital. I hate hospital, but I can see what is happening to those that I love around me so am going to go in. Bert and I spoke at great length about it and I am going to go in for a week, to see how it goes, full time. Overnight, the whole shebang.

It has genuinely got to the point that if I shut a drawer everyone comes running to check if I am ok, and this is NOT what I want for my family. They are on DefCon 5 at all times and it has got to stop, and stop it will for a week for them.

I think it is going to take about 3 weeks to sort, but I am actually quite surprised that it is something that I want. I want my husband and children to get a break from it all. Myles and Elizabeth have been fantastic and are always on hand should we need some help – Myles to help get me onto the bed, Elizabeth to administer my medication whilst Bert counts, films (my lovely Neurologist wants video footage of my seizures) and generally gets burned out from it all.

So, on a seizure count averaging out at 60 a week at the moment, I shall say bye for now!

Sarah

Apparently I should be comatose!

A very good friend of mine who is a hospital pharmacist moved from the UK to New Zealand with her husband and 2 children about 9 years ago. 6 months after she got there, her husband died from undiagnosed cancer and she has stayed there trying her best to make a life for herself. I miss her terribly, as being a teenage Mum, she saw past that and welcomed me into her group of more middle class and slightly older friends, who helped me through the early years (I had 2 children by the time I was 22 and was single as their father was violent),

All of this isn’t particularly relevant, but as I am in the habit of oversharing, I thought I would continue with my long held tradition! Anyway, I was awake at silly o’clock the other night and we were chatting on Face Book. She had seen from my statuses that I had been having a rough time and asked me what medication I was on, as she might be able to help. To the uninitiated, pharmacists are actually exceptionally good at picking up contra indications with multiple drug therapy users (yours truly) and was wondering what I was on. So, I listed it off, which I am now going to share with you all. Bearing in mind, I have my degenerative disk disease, epilepsy and assorted other things, here we go, and I will group them accordingly (I am unsure as to some of the dosages, as Bert and my GP take care of that, I genuinely don’t want to know anymore as being a trained nurse, it genuinely is a case of to much information.

Pain Medication
30mg MST (slow release morphine in tablet form) twice daily
1g paracetamol four times daily
Mefenamic acid (ponstan) 3 times daily
Oramorph 10mg in 5ml – prn
Tramquel 2 tablets twice daily – also prn

Ok that is the back covered!

Epilepsy Medication
Epilim Chrono (sodium valporate) 400mg twice daily
Keppra (leviticeram) 750mg twice daily
Midazolam oromucusal solution for when I go into status epilepticus – yay for emergency meds!!

I guess they are the main ones. I also take 40 mg of diazepam throughout the day, which is dual purpose. For my back and for the seizures. I take Ropinirole as i Have early onset Parkinsons (clumsy? Me? You betcha!!!)
Folic acid and vitamin b12 injections too, as I have Addison’s Anaemia, oh, and asthma to.

So, without thinking I reeled the above list off and C nearly had a meltdown on me (via PM!). She was amazed that 1 – I was actually awake and 2 – was actually forming coherent sentences!! Apparently I am on enough to knock a very bad tempered rhino to sleep (hah, she must have seen me the other day!!!)

And the strangest thing through all this? I STILL suffer from insomnia!! It has plagued me since I was about 14. I have only got myself to blame as I was absolutely horrendous as a teen. I drank, smoked, took drugs, you name it. I have never hidden the fact from my family as someone will tell them if I don’t, but I know now the long term damage it has had on me and the only finger pointing to be done is at myself.

I read a wonderful gentleman’s blog yesterday, and he had made a post about epilepsy medication which got me thinking about what I was on, as I have both the back and the epilepsy to contend with currently.

My life seems to revolve round alarms set for 8am, 12pm, 4pm and 8pm, quite literally! All trips out have to be carefully considered and planned with medication times and ‘do I have to eat’ etc with them. I have just stuck a chocolate bar and a bottle of water in Lilith’s bag which makes life a lot easier now! I am passed getting embarrassed and cracking open the class A’s in the middle of a shop and knocking them back now if I am with Bert! The middle class ‘ladies’ throw me the glares, whereas the gents usually ask if Bert would like a hand – oh yeah, that one is getting more and more evident every day, for sure!

On an absolute tangent I won a pair of earrings yesterday!! A local business was running a ‘get 5 friends to like my page and receive a pair of trendy earrings free’. I wasn’t particularly interested in the earrings, but the local business belongs to a friend of a friend, so I am a huge supporter of local business and put the link up and ……. was the first person to win! I actually got them for Elizabeth who promptly lost her ‘shiz’ as she would put it as apparently Shamballa earrings are really trendy at the moment. What do I know, other than the fact I won her a pair!!

One thing I will say is that the lady who owns the shop is amazing. I am looking for a handbag for Richard’s wedding that will hold a 6″ long tube (midazolam) and assorted other medications without looking like a bag of medication and the lady told me to send her the size of what I needed, and within half an hour had got back to me with the perfect bag, and, after enquiring if her shop was wheelchair friendly, she confirmed that, so I told her that it might be an idea to pop that on her page, as it is one of the first things I have to look for.

The amount of shops I can’t get into is unreal, so this Thursday I am going up to meet the lovely Francesca and get my evening bag and Elizabeth’s earrings.

Good god, I have just had to check what day of the week it is! Tuesday I am reliably informed by my computer. Weather sounds absolutely foul out there so not entirely sure what today will have in hold for us. I know I am going to do my Avon order, and drop that up to my sister in law, and that is probably about it. Oh, like I said, the high life for me!

So, on a seizure count of 32 since my last post (not even counting them up in the week now, it is tooooooo depressing!) I shall bid thee adieu!

Sarah

Houston, we have clarity!

Well, after yesterday’s shenanigans, all is now well. I think it could be fair to say that when I wrote yesterday’s entry not only was I angry, exhausted from the seizures (now well and truly on the downward spiral, thank you Dr Flake and your “controlled” withdrawal – really NOT helping) and was annoyed that my life had been organized without my input.

This can be a fairly common occurrence as sometimes I am genuinely not in a fit state to make decisions for myself, but yesterday I felt I could.

I had organised my best friend to say over the night before the wedding so that Bert could go up to his brother’s house to stay (she is more than capable of looking after me) but no, Bert was having none of it. As stress is a BIG trigger for my seizures, I decided to calmly ask Bert why he was being so obstinate about the wedding plans.

It actually turns out he doesn’t want to be best man. What hurt was that he used my epilepsy as an excuse without asking me first. Most people with epilepsy will probably be able to identify with the fact that they don’t like being the centre of attention, which is inevitably unavoidable most of the time. It follows you everywhere. Job applications, driving licence applications, travel, you name it. It is like having a criminal record, you HAVE to declare it. It is especially hard when the seizures are not under control as leaving the house alone is like planning a mission to Mars. Most people worry if they have their keys, wallet and phone. Oh no, not for an epileptic! Do I have my wheelchair, a change of clothes, my midazolam (emergency medication for going into status epilepticus), extra diazepam for if I can feel simple partial seizures building. Oh the joys!!!

So, you can see why trying to maintain some semblance of normality is quite hard, especially when you can’t walk either! I just felt using MY epilepsy as an excuse not to be best man at Richard’s wedding was a little shallow. I told Bert very calmly that I felt he should have been more honest with his brother in the first place.

I was surprised that Bert was asked to be best man in fairness, as he is actually incredibly shy, dyslexic and the thought of him having to make a speech was making him feel sick with nerves already, even though I had offered to write it for him. It would have upset me having to watch him stutter and stumble through a few words but he was prepared to do it for his brother. Out of his 15 brothers and sisters, Richard is the one he is closest to.

I guess I was just angry that I wasn’t included in the decision. Now, don’t get me wrong, collectively, Bert and I have used my epilepsy as an excuse for getting out of a plethora of invites to candle parties, tupperware parties (seriously, they still have them!), bbq’s etc as we don’t drink and in fairness, given that 8pm is my bedtime at the moment due to the medication, I would have had to push myself into borderline 999 territory to actually attend these things.

One very good thing came out of it all. Bert has promised me he will never do it again without my permission. I had felt as though I was letting Richard down the way it was explained to me by Bert, but once he had calmed down and explained it properly to me I understood where he was coming from.

Yes, I may be medicated to the hilt, and on occasion, not even know what day of the sodding week it is, but I am still a 39 year old woman with 2 degrees and a member of Mensa and I do NOT want to be treated like an idiot. Even if I dribble after a fit!!

I think this has done our fledgeling marriage good. I have learned not to jump to conclusions, all I need to do is take tiny steps and there conclusions are, and Bert has learned to keep me in the proverbial loop. I am in this for the long haul with him, and I stick by my vows I made in church on a very sunny day last October. It will be till death us do part.

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

Oh joy of joys!

Definitely going with the more light hearted blog entry here, apologies for the last one being so morbid, but I felt strong enough to post it when I did, and don’t regret it in the least.

For me, today was a big day. I had a Doctor’s appointment with my GP. Now, the last time I saw him I have absolutely no recollection of him seeing me whatsoever. I had 11 seizures in the waiting room and not ONE person went to get Bert any assistance for me. A couple of members of my family work up there, but they weren’t on duty. Anyway, (and this is 2nd hand information as I don’t recall it in the least), I got into his room and promptly had 2 more. The first thing I knew of it was coming too with an oxygen mask on me with a nurse at my side.

So, on to today’s appointment. Now, I have known this has been coming for some time as Dr Flake (the nickname that both Bert and my GP have given my Neurologist) is wanting me to DROP on of my epilepsy medications. For anyone not familiar, the abridged version is that there are two types of epilepsy medication. Front line, and then ‘bolt on’ ones that are only ever used in conjunction with front line ones. I am currently on sodium valporate and leviticeram (Epilim Chrono and Keppra). Epilim being the front line drug, and Keppra being the second line one.

Now, in Dr Flake’s infinite wisdom she wishes me to drop my Epilim. The last time we did this, I spent a week in hospital, last June (you know, the one where I screwed up my Mum’s 70th birthday by being on the Coronary Care Unit as they couldn’t cope with me in Intensive Care.

My GP doesn’t want to drop my medication,but his hands are metaphorically tied and we have to go down this route. I think it is going to be a way of him showing her that he knows best, but unfortunately at my expense. He is aware of this, and doesn’t want to have to do it to me, but it is the only way we are going to get me the actual treatment that I need.

So, in Bert and I go for today’s appointment. Out we come with a prescription for a lower dose of Epilim. Now to say I am terrified is an understatement, to say the least. But I am going to carry on with my day to day stuff, and try and give a decent reading as to if the seizures go up. Oh who the hell am I kidding – not IF the seizures go up, WHEN they go up.

Just to add insult to injury, Joshua’s girlfriend has been round the house coughing and sneezing her little head off. I am particularly susceptible to picking up infections at the moment and yup, you guessed it, first chest infection of the year confirmed. It just gets better and better. So, could well be in for a very bumpy ride this week, that is for sure.

As the drop in Epilim won’t be apparent in my blood stream until tomorrow, we went to town today as our cooker decided to give up the ghost on Christmas Eve. Thank god my Mum lent us hers, but we realized we had to bite the proverbial bullet and get a new one today. Fortunately my husband’s requirements were exact, 600mm, double fan oven. Nothing more, nothing less and in whichever colour we could get it.

After pricing up a few, we stumbled on a gem of an electrical cash and carry, and got a cooker that we had seen in a well known electricals shop (priced at £575) for £250. Yep, you heard that right. And why was it so cheap? Because …… it had a dint on the side of it! Oh believe you and me, we paid with indecent haste!! Full warranty, the works. We were more than impressed, so impressed in fact that we went back to the well known chain and bought the house a late Christmas present! They had lovely matching kettles and toasters in a cream, the old fashioned style that were £60 each before Christmas, dropped to £40 each on Christmas eve, and I picked up both for £58 this afternoon! I forget we only moved house a couple of months ago, so that is the kitchen now finished. I am not one for statement small electricals in bold colours, both Bert and I prefer more timeless things, and cream fitted the bill perfectly.

By this time I was getting rather hungry so we popped into town for a late lunch, and then had a quick look around the shops. I could have spent a fortune, so came home empty handed, always the best way for me!

So, on an actual seizure count of 0 I am going to say good night as tiredness has just crept up on me like nobodies business!

Watch this space to see if Dr Flake is correct!

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.