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.