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

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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.

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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.

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

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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:-

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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.

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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.

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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…

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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:-

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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

In the absence of a Catherine…..

Bert treated me to an afternoon out with the camera. Now, please remember that these are taken from a wheelchair, so aren’t going to be the best. Something a gentleman said on his blog (he is a professional photographer) gave me the kick up the bum that I needed to want to share some of my pictures with you. To paraphrase something he replied to one of his comments – if you are taking pictures for someone else, you shouldn’t be.

It was that that gave me the gumption to share my favourites with you all, so here goes – my little efforts from today, but there are a couple I am particularly happy with them.

Ok, first up, I use a Fujifilm FinePix S4400 bridge camera, and all my photos have been run through Aviary for cropping, filters and saturation, and have had the text added by TitleFx. So – here goes. Constructive criticism always welcome, I am not the kind of person to spit my dummy out of the pram – I genuinely want to learn as much as I can.

(Pic heavy, 9 incoming)

Clypse reservoir car park

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Bert very kindly posed for the next photograph for me – not sure why, but I like photographing shadows…

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Now the next one was a bit of a one off, I just turned round and it caught my eye……

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But I have saved my personal favourite until last – yet again, no planning, just me looking round and being mesmerized by what was in front of me….

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I am genuinely quite proud of this last shot. I know they aren’t much, but I feel as though I have accomplished something as I am a wheelchair user and can’t get to all the pretty places I would love to, buy hey ho, I like to think I am making the best of what I have!

Until the next one (which will hopefully be a Cathy spam)

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

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

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

I really should act my age…

But yet, am going out this afternoon. It has taken military precision, liaising with a venue and all kinds of trickery with my medication but……. I am going to the cinema!!! Fortunately my epilepsy is not photosensitive, so we should be good to go there. Where I live, there is only one cinema with wheelchair access and it has ….. ONE screen! So, with tickets booked, the venue informed of my epilepsy, and my  beautiful daughter Elizabeth coming with me I am very ashamed to announce that I am going to see Breaking Dawn part 2!

I have been to all the Twilight Saga films with Elizabeth, so we thought we would see this one through to the bitter end together. Munchies packed, emergency medication packed, Bert on a knife edge in case I get taken ill and the car filled up with fuel and Lilith we are off!

I am definitely going to report back later as this is a HUGE step for me. I haven’t had the confidence to do something like this since March, so I hope the excitement doesn’t trigger a seizure!

Much waffling will ensue when I return,

(one very excited) Sarah

 

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

It is official…

Not only is it my birthday a week today, but I am getting married this month too. I think we can safely say that slight panic is starting to set in. Thank god I haven’t got a reception to sort out – we are just having a simple Church do and then back to the house.

Everyone keeps asking what I want for my birthday but there is genuinely nothing that springs to mind, other than a new brain and a new back (hmm, might re write The Wizard of Oz on that front!). Just a quiet seizure free day with the family sounds like plan. Oh, I suppose and Indian meal wouldn’t go a miss, only the main problem is I am in the minority, everyone else prefers Chinese food. Might just stamp my foot down on that one!

So, the weekend. That was a revelation. We went up to our main town on a shopping expedition with my husband to be and my step son to be to get a few bits and bobs. And, I am sure you are on the edge of your seat, some more pyjamas for me. Somehow, I ended up £150 lighter – how the feck that happened I have no idea. Might be a combination of M&S, HMV, TK Maxx and the Irish version of Poundland (Dealz).

Urgh, just remembered, I was going to give you some of my thoughts on being in a wheelchair. This does fit in with the shopping trip quite well. One thing I have to say – people can be quite bloody rude! And you have NO idea how disorientating it is being that low down in shops. I can’t see where I am going at all! I have to get Bert (the OH) to go ahead of me so I can follow him. Same in all the shops really.

One thing I have noticed is the difference that men and women display towards me when I am in Lilith. Men? Couldn’t be more helpful. If there is something I can’t reach, they are super polite and ask if they can help (obviously not wanting to offend me, not that I am easily offended). Women (mainly the ones without prams)? Bloody animals! And don’t even get me started on the shop layouts. Men’s section? Fine. Women’s section? Christ, I would have more luck in the Crystal Maze!! Ok, I am specifically speaking about Marksies here but still. Ok, maybe I am being a bit harsh but I actually had a woman push me out of the way whilst I was looking at something? I mean, a simple excuse me would have done. I actually felt quite incensed at it all but fortunately one of the staff commented on it for me. Like I said, apparently my IQ dropped the moment I put my backside in Lilith. Note to self – put brakes on at all times and grow a thicker skin!

What was nice was being able to keep up with my boys. Normally they tear up and down the high street with me lolloping along behind them planning the shortest route possible. I am enjoying the freedom of not having to bother with that anymore.

Of course I managed to ruin a perfectly good day by having a 7 minute seizure in the car on the way home but it goes with the territory. Some of the seizures I can ‘push away’ almost if I really concentrate and I had been trying for an hour but once we were in the car, boom, off I went. Still feel like I have had a sledgehammer put through my forehead now.

Tonight is quite a big night for my second bridesmaid. My chief bridesmaid is my 16 year old daughter Elizabeth and I have seen her in her dress and it is currently at the dressmakers getting taken up. Tonight my other bridesmaid Leanne is going to try her dress on for the first time. I am keeping them at my Mum’s house so we are going round with her and her Mum (my SIL2B) so that she can have the pleasure of seeing her daughter in her dress for the first time. Then we can have the great unveiling in the living room afterwards.

I have good things planned for tomorrow, should be my final dress fitting for the wedding dress. Fingers crossed for no fits there please! The design is simple, shoulders and elbows covered as it is in a church – I was brought up in a Catholic country and some things just stick in your head. The wedding is on the 27th of this month so if I can woman up, pics may be incoming.

It is all starting to get so bloody real now, so close. When we decided to get married October seemed ages away yet here we are – 3 weeks on Saturday and I will be married for the first time. My father is dead so my son Joshua is giving me away- I think he is looking forwards to it a little TOO much! He has already rewritten a Red Hot Chilli Peppers song (Give It Away) to Give Mum Away to seranade to me down the aisle. Unfortunately, NONE of my family could hold a tune in a bucket with a lid so I just hope he does it very quietly!

I will probably go with a quick update tonight after Leanne has tried her dress on, so with a seizure count of 1 yesterday and none today, I shall sign off.

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