Had a bit of a surprise today..

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

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

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

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

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

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

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

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

Sarah

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I would like to introduce you to Frank

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sarah