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

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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

Well, note to self….

Wow did I enjoy the cinema trip. The staff were beyond lovely, the seating area was fantastic I genuinely think I had the best view in the house with Elizabeth. As it was such a huge deal, having an afternoon out with my daughter, the first one since my epilepsy decided to rear its uncontrollable head and I have had to start using a wheelchair I was like a kid in the proverbial sweet shop!

Now, my eldest bought me an iPhone 4 a few months ago and in fairness, I am only just getting to grips with it properly (especially since the IOS 6 update – that one threw me!!) so thought I would do the ‘check in’ via Face Book. I was genuinely surprised that a lot of my friends ‘liked’ the status but a lot of them realised how much it meant to me, getting out somewhere with my daughter and giving Bert some time off (which he used wisely by going to visit his younger brother and spending some time with him).

So, no need to go into the details of the film, you will either know it or not, like it or not, but I really did enjoy it. Elizabeth and I agreed that it was the best of all 5 of them and thought nothing more of it. An enjoyable time was most definitely had.

What I REALLY wish I hadn’t done was try and be a smart arse by playing round on my phone. I came home, did the shopping list with Bert for tomorrow, came upstairs to get ready for bed (bed time for me is about 8pm) and thought I would have a quick check on Face Book.

WOW do I now wish that I hadn’t as every last shred of enjoyment I had had this afternoon has now disappeared with one ill considered comment by a 15 year old girl (my bridesmaidzilla from my wedding). Last year, I took her with myself and Elizabeth to see Breaking Dawn part 1. Last year, I could drive, didn’t need anyone with me 24 hours a day and wasn’t in a wheelchair.

Under my little ‘check in’ at the cinema, along with the lots of likes from people who understand what a huge step it has been for me was the most singularly sarcastic comment from her. Believe you and me, I can be over sensitive on a good day, but it has taken, as I said, every last shred of enjoyment out of my afternoon which had, up to that point bolstered my confidence no end. I am not going to quote it verbatim, but to condense, “So I take it I am not coming this time”  – you get the gist.

Now, this is the first time I have been out and I had to have someone with me to give me my emergency medication if needed. I had called ahead to the cinema to see if it was OK if I came, and had everything planned. I hadn’t done anything on this scale without Bert since I got really ill so I was looking at it as a practise run to see how things went.

I actually DID have an absence seizure during the film but only Elizabeth and the couple sat in front of us noticed, and bless them, they did offer to help my daughter if she needed it but I came round fairly quickly and quietly.

I can’t take care of myself, never mind a rather self centred niece. I couldn’t have gone in the evening as it is on far too late for me and Elizabeth works weekends, so quite what she was expecting I am not sure at all. What I do know is that I am going to speak to her mother about it, as I feel I shouldn’t have to explain myself to a 15 year old girl.

Anyway – tomorrow is shopping day, so tomorrow afternoon is going to be spent on a much lighter and FAR less self indulgent post. And if it kills me I will learn how to put hyperlinks in my posts!!!!

Woah, rant over and apologies for anyone that has managed to stay with me on this one!

Good night from one very over sensitive Sarah, I hope that you all have a better day than I have had.

A month? I shall explain! Moving house, weddings and really amazing teenagers!

Wow,  I had no idea it had been this long since I had made a post – not good. In my mitigation, I have been up to my eyeballs in it. So, even though I am in the UK, I have been up for hours watching the US Election. I am not usually one to fanfare my politics but am glad that Barack Obama is back in. Enough of that considering I haven’t lived in the US since I was 3.

To put it bluntly, the last month has been beyond crazy. Bert and I are now married, we have moved house, my seizure count has gone through the roof and my wheelchair use has too.

The run up to the wedding was crazy. Bert has a very laissez faire attitude to life, but that is part of his appeal. Now, as we have primary custody of his youngest son, and his ex wife has primary custody of his eldest son, we wanted to wait until the eldest was over before the suit shopping commenced, so he didn’t feel like an add on.

All well and good but I learned a lesson. Never give 4 men £1000 to buy 4 mid price suits, shoes,shirts and ties. It is only ever going to end in disaster. We married on the 27th of October so with Leigh coming over, the only night to go and get them was the 25th of October (God, I wish I was joking, but alas, no!). So, off they go, Bert, my son Joshua, Leigh and Myles to get themselves sorted for the wedding in 2 days time. Marks and Spencer was the venue of choice because of the range so all sorted. Or so I thought.

My daughter Elizabeth was duly roped in to babysit me whilst they went to get their clothing. Now, I have been the antithesis of  a bridezilla as I wanted Bert to have as much input as possible as he could. His first wedding? He had absolutely no choices in whatsoever so I probably went overboard allowing him as much free reign as I could.

As I have documented my epilepsy well enough, Elizabeth was more than well equipped to look after me, and Bert had left my medication out, and tea for us. Well all I can say is thank fuck I had taken it before they got home. Joshua? (who gave me away), not a problem. Lovely grey suit, light mauve shirt and mauve striped tie to match my Mum (my father is downstairs in an urn, so he wasn’t going to be giving me away funnily enough). Leigh and Myles? Gorgeous grey suits slightly different from Joshua’s and lovely grey ties. Then it happened. Black shirts came out of the bags. Thank god I had enough valium in my system because I was not a happy bunny to say the least. And as for Bert? He forgot his suit! Oh yeah, that was just the start.

So, after a rather horrendous and upset night’s ‘sleep’ I got my shit together and spoke to Bert about how unhappy I was. We have only ever had one argument and that was 22 years ago and I wasn’t about to start one the day before the wedding.

Now don’t get me wrong, I had absolutely NO problem with Leigh and Myles keeping the black shirts, they just were NOT going to wear them at my wedding. Ok, so Friday morning I calmly told Bert that 1 – NO black shirts, 2 – err, HE needed a suit, shirt, tie and shoes and 3 – we were going to get it done that day.

So, first thing Friday morning, back up to town (about 15 miles away). 2 gorgeous dove grey shirts bought for Leigh and Myles and 1 gorgeous charcoal pinstripe suit bought for Bert, who, in his infinite wisdom, decided that a stripey blue shirt and blue spotty tie would go with the cafe latte and brown duchesse satin of my wedding dress. He also had a pair of dress shoes at home so fair enough.

We get home, grey shirts look fantastic, boys happy. Charcoal grey suit, Bert looks fantastic. Blue stripey shirt and blue spotty tie next to the swatches of my wedding dress – AAAARRRRGGGGHHHH!!! Ok, slight overreaction but let us just say, it did NOT go. As for the dress shoes? The soles had parted company with the leather uppers.

No crystal balls needed to see what was coming next. Now I can put my hand on my hear when I say that I have let everyone have their choice as my feeling was that I wanted everyone to feel comfortable but by 1pm, Bert conceded defeat and asked for my help. You guessed it, Bert, Lilith and I got in the car and back up to M&S. This time with swatches of the wedding dress. He put me in charge of getting it all sorted (he was going to get his shoes mended) later on, so off we went. First stop, M&S. Now, there are ladies and gents there trained to help, so I asked a REALLY helpful assistant if she could help match up a tie to the swatch. Literally 3 minutes later, we had the perfect tie. Eureka part 1. Plus, Bert loved it and it had charcoal and grey stripes through it which opened up his choice of shirts. He didn’t want to wear a white one as well, he just didn’t and it was his wedding too, so no problem. He wanted an off white/cream one. Was there one to be had? Was there buggery! I finally found one he loved in a light charcoal which went beautifully.

We decided to keep the blue already bought so he had 2 looks for the suit as we have a family wedding coming up next year and it will be perfect.

So, home we go for the second time that day. Bert took his shoes to the cobbler to find out that THEY COULDN’T BE FIXED. I think I had had about 5 seizures by this point as we still had to go back to town to go and get his niece Claire as she was coming over with her daughters Lauren and Anne for the wedding (Anne is 5 and was my flower girl as a surprise for her).

Bearing in mind, we are now hitting 5pm, and Claire and co are getting in off the boat at 5.45pm, you guessed it – back in the sodding car to sodding M&S for sodding men’s shopping that I had been put in sodding charge of! I was supposed to be at my Mum’s by this point in a Hello Kitty onesie with her, my daughter Elizabeth and Mum’s boyfriend watching Love Actually, not having a borderline nervous breakdown over bloody shoes and picking people up off the boat.

So, cue the fastest ever trip to town (we have hit 75 miles by now, and there are no motorways where we live so my back was starting to complain rather loudly). So, we parked up, Lilith and I wheeled off in haste down to the men’s shoes section (just an fyi, how unfair is that? The selection is disgraceful compared to the women’s) armed with my debit card which I had visions of going on strike.

So, men’s dress shoes. Now Bert is a manual worker, and a bloody good one so generally spends his days in ‘work clothes’, ie, steelies, jeans and a hoody but when he scrubs up, his sartorial choices are second to none. He has always had style. Even on our first date 22 years ago, I felt distinctly under dressed as he turned up in a sharp suit. He was looking for leather upper, round toed lace up dress shoes. Oh hell no, not a chance. So, after a little cajoling, he compromised on a pair of slightly square toed dress shoes (and admitted they were really comfy, but apparently I am sworn to secrecy on that one!).

We bought them, went and picked Claire, Lauren and Anne up and he brought me home to get my bag to take to my Mum’s house. Now, bearing in mind I was supposed to be there at 5 and it was now half 7 he THEN told me he wanted me to cut his hair! He is losing a little at the front and likes the way I shape his neckline so clippers out and off I went. I *think* Elizabeth and I got to Mum’s about half 8.

Now in all this I have omitted to mention that it was actually Bert’s 45th birthday that day. He thought I had forgotten but with the help of Elizabeth, I had his card and present hid, but not to be opened until I went. Both Bert and I are teetotal, so I had got him a hoodie made up saying “I am not allowed a stag do” along with the road sign for a stag with the red line through it. Just so the boys didn’t feel left out, I got Leigh and Myles one each saying “Dad is not allowed a stag do” and one for Joshua saying “Bert is not allowed a stag do”, but on the back of his it said “But I AM getting rid of Mum”.

I got to Mum’s, got into my Hello Kitty onesie, and promptly fell asleep! Yes, I am the queen of hen nights!!! The fits and the traveling had completely taken it out of me. God love her but Elizabeth stayed awake most of the night as she knew I was in danger of going into status. She is not only my daughter, but my best friend, my confidante and, god love her, was the most amazing chief bridesmaid.

So, from a newly married first time bride at the age of 39, on a fit count of over 50 since I last posted, I shall say bye. I am going to update later today with the wedding, the house move and then, most importantly my appointment for the neurologist. I am still laughing about that one now!

Sarah

Meet my epilepsy, will make the rest of this blog make sense!

Well, I kind of guess this is where it is going to start. Just a small chronicle of my life that I am hoping that not too many people read. Sometimes there is just too much running round in my head it is easier to get it down on proverbial paper.

So, were to start. I am 38, 39 a week on Monday. I am getting married 4 weeks today too. I have two teenage children, and two teenage step children to be and somehow, by the grace of whatever you want to call him, they all get on. I can genuinely say that I have never been happier in my life which is saying something. I have not had it easy and am the first to admit that about 75% of it is of my own making. Ah, did I mention too that I am disabled?

I think I have had epilepsy since I was 2 years old, when I contracted meningitis whilst living in Trinidad. I wasn’t formally diagnosed until I was 17 though which made school fairly interesting. The type of epilepsy I had was what is know as temporal lobe epilepsy which lead to some fairly unusual situations in my formative years. It can be quite unnerving getting a bollocking for something you genuinely have no recollection of!

Anyway, I hadn’t meant to go into so much detail back there, plenty of time for that at a later date. So, on with the epilepsy theme for now. We got it under control by the age of 21, and by 24 I had my drivers license, 2 kids and a good job. I had split with their father as he was physically abusive but I can honestly say that I was content in my life. Life kind of drifted by which was fine by me.

Fast forwards a fair few years and I was sat in my husband to be’s bedroom and out of the blue, went into what is known as status epilepticus. To save boring anyone still with me to death, it means going into a series of really big fits that I couldn’t get out of. So, cue 999, loads of what I thought unnecessary faffing around at the hospital and a night in ICU.

Little did I know that day last March (31st to be precise) has turned my life upside down and inside out. My seizures are now completely uncontrolled, I can’t be left alone at all (although a baby monitor has saved my life on more than one occasion!). Nope, not even the toilet on my own. 24 hour supervision. I am clinging onto my marbles for all I am worth but just put yourself in my shoes for just half an hour and you will see what I mean.

I have had seizures EVERYWHERE. Supermarket? Check. Chemist? Check. Fishing tackle shop? Check. The list is endless. Funny thing is, that each time I have a seizure, my world seems that tiny bit smaller. I can’t really think of any other way of putting it (I am probably having temporal lobe activity right now, it wouldn’t surprise me as I have auditory and visual hallucinations too).

So, with all this to content with you can imagine life is pretty interesting at the moment. I did however leave something out at the start. 5 years ago last February, I got sciatica. Yep, I know, very common thing. Unfortunately I was misdiagnosed and I actually have a benign tumour on my spine, and a double disk herniation (L4/L5, L5/S1 for anyone that is interested). When I say I didn’t leave the house for 18 months due to the pain, I am not lying. All I can say is I don’t know what the hell I would have done without internet shopping and a very understanding GP.

So I guess that paints a picture of where I am at at the moment. I can’t walk unaided, I am doped up to the eyeballs on medication and have had to concede defeat. I have been resisting for 4 years against all professional advice and refused a wheelchair but 2 weeks ago, I realised in what I believe was a ‘moment of clarity’ what my stubbornness was doing to my family. I can’t be left alone, I can’t walk, so I have, and to be honest – reluctantly, ended up in a wheelchair.

Don’t get me wrong, this blog is not going to be all doom and gloom and me, me, me, but I am just setting up where I am in my life, so that the rest of my posts will (hopefully) make sense! Lilith (yes, I have named my wheelchair, and for anyone who might have spotted it, a HUGE Supernatural fan) and I are off to town tomorrow courtesy of the husband to be. There are a few observations I have made since the transition into the chair, so I hope to NOT have a seizure and be able to share them with you tomorrow. Things that you might be surprised at and how suddenly, my IQ has dropped by at least 30 points!

I do have to be honest, this is my first blog so I know I am going to get it wrong, but I am determined to at least do something when I am stuck in bed. I think that tomorrow, I will report back on how Lilith and I get on and tell you about the love of my life. And believe you and me, there DOES lie a tale and a half!

So, on a seizure count of 0 today, I shall bid you farewell.

Sarah