I’m sorry this post is so late – I got a little stuck in the impossible head of a perfectionist. I’m in support of equality, and I wrote a new page accessible on my website about it all. But still, I’m really not the sort of man who’s going to be able bring world peace among us all. With fatigue, I certainly don’t have the energy for that at the moment.
Stuff relating to epilepsy and disability has occurred in my life this month. So, let’s make this review happen. What’s been happening for an epileptic man called Joe Stevenson?
Well, in November, I got to see the main man who’s in charge of my health. His name is Dr Peter Clough, and I value him as an epilepsy specialist. He’s a really nice guy and, to be honest, I pretty much just see him as a good friend now. He doesn’t tend to keep me waiting after I arrive at Salford Royal Hospital either.
My seizures have been differing, with ups and downs over the past six months. But it’s not really improving. We set out a different medication list when I saw him last. But I think it’s safe to say the drugs don’t work. In fact, it’s five percent less likely that a new AED will take effect if you introduce it to your prescription. I’ve tried plenty of new drugs now. What else is available?
One alternative way that I can try to deal with my epilepsy is through surgery. But this isn’t brain surgery; I went down to London to find out if that was possible a while back. It won’t work for me. So vagal nerve stimulation is what I’m considering now. After my chat with Dr Clough I had to remind myself what VNS involved. But I’m reminded now and think I want to give it a go.
As you might have guessed, it’s all about stimulating the vagus nerve. This is a nerve that starts in the brain but runs through the body. It can help reduce seizures, something that is done alongside taking AEDs, and that’s fair enough considering it’s controlling my epilepsy reasonably well.
However, if it works well, it can help reduce seizures, and also maybe improve my memory, mood and alertness too.
It’ll involve implanting a little gadget with a battery into the upper left side of my chest; similar to a pacemaker. Wires will then be running up the side of my neck to the left side of my brain. The surgery to get it done only takes about one hour to complete. This means I should be out of the hospital on the same day or the next day after it’s completed.
It might look a little odd with no shirt on, but I do like the idea of having a bit of tech inside me! It can take up to two years to work, but if it’s totally ineffective it can be removed too.
One other thing I inquired about when I saw Dr Clough was medicinal cannabis. Unfortunately though, that’s not available to adults with epilepsy yet; just children. I do believe the children should get first rights if needed. But I hope they get testing to find out how it works and helps adults with epilepsy too. It’s helped a lot of people with various problems in the USA, and it’s also available in the UK for people suffering from vomiting and nausea when receiving chemotherapy.
My Employment Status
I’ve still got my time to do all this writing and I love it! Well, I’m surviving at the moment, and I’m grateful for it really. I asked for an investigation in to whether Dixons company wrongfully set me up with insurance I never agreed to. After that, NatWest automatically planted about £900 in my account and it’s keeping me safe at the moment. This money could well be taken away, but they will give me seven days notice beforehand if they do so.
If that happens, I don’t know what I’m going to be doing for sure. However, as a spiritual person, I’m thinking that may well be the point where I’m told I have a job. In November, interviews and registering with new recruitment agencies has come pretty quickly. I think one is due to start in the not so distant future.
I had an interview in X1 Lettings, and in my eyes, it went very well. I’ve not heard back from them yet, but they haven’t rejected me either. The job is still being advertised as open online, so I’ll wait and see what happens. Maybe they just want to interview more people… I don’t know. I also joined a couple more recruitment agencies, and arranged for interviews to take place in December that I think I’ll have a chance with.
My Social Life Boomed a Bit More
It started off with just my friend James Coupes’ 30th birthday. Although I didn’t stay out too late that night, I caught up with people I hadn’t seen for a while. It was good fun, and I enjoyed it too. I also got social with some new people after signing up to the CitySocializer.com website. I joined the site because I feel my lifestyle at University led to me not making enough friends.
I did meet some pretty interesting people during a Saturday night out in town. I can’t deny though that it is tricky to talk and get to know people that late during the weekend. But still, it was a good experience, and I’m willing to join people for new social events in the future too.
I try to be a positive person, but feel a lack of friends is one of the reasons I still feel a bit isolated from society. Socialising with some new people might well help me fix this issue.
I met up with my dad and had a good chat with him. I believe I had a few little meet-ups with friends in pubs and bars to deal with too. As the month came to a close, I felt like my social experience had worked a lot better than it did in October.
My Voluntary Work
Throughout November 2018 I completed another month of voluntary part-time work at The Hope Centre in Sale. I did quite a bit of working for them before I was employed by Lloyds Banking Group. This was initially to just to gather work experience when they advertised their need for a voluntary receptionist. But officially known as Light of Hope CIC, they work as a community interest company and offer holistic therapy and other spiritual practices to the public for fair prices.
I’ve spent plenty of time at the Hope Centre receiving reflexology and attending meditation. I’ve also done a fair share of reception/admin assistant work too. They’ve helped me out, and still give me a price reduction for my administrative efforts too.
Staff at the Hope Centre work in a very friendly and fair way with their clients. I wasn’t spiritual when I first started volunteering with them. But, after meeting such friendly and positive people, I couldn’t help but gain more interest in their quality lifestyles.
I learnt more about their ways of thinking as time continued, and I’m glad that I did. It was all my decision too: I just started asking questions, and they never forced me to do anything.
They appreciate my help at the moment. They don’t have the money to pay for a receptionist, and the area isn’t covered too often by volunteers either. Answering the phone when therapists are in practice is what they want more than anything. I make new, cancel and amend bookings, and take messages for the staff too. There’s also a lot of other administrative duties that can be dealt with through the day – things like photocopying, data-entry on computers, filing, and folding leaflets.
In all honesty, it’s never too difficult to manage, and I’m happy to help out. It’s also good practice for my next job that’s coming up.
New Ideas – Equal Thinking
As I’ve mentioned before, I also volunteer with the GMCDP at the moment too. I’ve been involved in a project they hold to discuss the variety of problems that arise for disabled people. After attending most of the project meetings, I also agreed to attend the GMCDP’s project relaunch event in Manchester city centre.
Inga, the project’s leader, did most of the talking. She explained the uses of discussing the matters in depth, keeping those listening interested throughout. However, I got involved with another project attender by reading out a short personal statement after Inga’s talk ended. I told people about how I feel the project was useful to myself and why more people should get involved in the project and the GMCDP.
I did leave the event a little earlier than others that day though. This is because I also wanted to attend the University of Salford’s Postgraduate Open Day. I went to their campus at MediaCityUK to listen to an overview of what a course in MSc Project Management would include.
If I’m returning to Salford, it sounds like the course I’m going to do. If I’m going to make Disability Central work (click here if you don’t know what that is) then it would be useful. Also, if I wanted to get involved with other paid project management work before that it’d be useful too.
Disability Central is off my mind for the time being. But I think gaining project management skills is a key point to making it move forward. Therefore it might take a little time to make it happen.
I had a word with Brett, a GMCDP project worker on November 28. I made it clear that my aim is to get a career moving that helps disabled people live their lives properly. After that, Brett told me one positive thing. Apparently, I should be able to join their communications team in the future. I think I’ll need a fair bit of training first, but will keep updated on when, where and how I can receive this. Being an ongoing member of the GMCDP sounds appealing to me.
You might be wondering how I could be a part of the GMCDP and form Disability Central in the future. Well, if Disability Central starts to work well in Greater Manchester then it’ll only be useful to the GMCDP too. More people will want to join them as a group, and that’s what they’re looking for at the moment.
I think I’ve still got a lot of work to do and a big point to prove to the GMCDP. But, by keeping myself as patient as possible and also being ambitious, I can still see it all happening.
And We’re Done
So, that was November. I can’t conclude with too much – I’ve got a vegetarian meal to eat and more interviews to prepare myself for in the future. Life isn’t going too badly, and everybody has to adapt to the stresses of buying people gifts at Christmas.
I wish you all the very best; take care.