To keep to the point, there is something I need to talk about today. It’s something some of you may well be aware. It’s something you might already be way ahead of me on. It does not (directly) relate to problems I’ve had with; asthma, urological issues, transitioning/gender dysphoria, sexuality, depression, Borderline Personality Disorder, tummy/IBS, tiredness/no energy/unable to sleep, hay fever. I’ve talked about all of these things in my LiveJournal over the years. Back in the beginning I did talk about this, but there’s not really been much to say – until now.
When I was young, some things happened more than once. I noticed my father gradually getting more and more clumsy, and indeed, aggressive. Later on, unable to concentrate. Fast forward to when I was of High School age, and it was obvious to almost everyone that something was wrong. My grandmother on my mother’s side (who I got on with very well) had knowledge of something, but couldn't remember what it was. I could tell there was something too, and I assumed that it would have passed onto the three of us children. My mother was overprotective of everyone she knew, so imagine what it was like when I tried, several times, to get some kind of clarity out of her.
Cut a long story short to 1998, and I’d been staying there for a few nights. I had left school at 16, having decided that I’d not want to proceed with further study, without making it clear what it was. For whatever reason I was about to leave for work at 1500 in Maryfield, but it must have been school holiday week, as my brother and sister, Mum and Dad, were in. Now imagine my surprise, when I was asking yet again “what’s wrong with dad?” This particular day is etched in my memory – not because of being a little late for work, but because I actually got a true response. I had been asking her, for years, what was wrong? Part of me wanted to know if I was at risk, as well as being concerned at the decline of my father’s health over the last ten years.
Mum said to us that dad had not been drinking or taking drugs (as a Christian teetotal family this would not have been an option), or indeed had not been doing anything else of his own will. He had been diagnosed with Huntington’s Chorea (subsequently this has been referred to by medics as Huntington’s, Huntington’s Disease, or HD). She explained that it was a genetic thing, and like with so many other announcements like this, the full weight of this didn't sink in for some time. Now, we didn't have Google back in the day - indeed I only went online the month after that.
I’d been presuming that this condition had been passed down to us, without warning or knowledge. By that point I’d already decided not to follow the line as my mother had been intending my further study, higher work, marriage, whatever. Had the problems with my father not been in place, I’d have went with it. Imagine what kind of a mess I’d be in today.
So, in the months that followed, I was becoming more widespread in my outlook. I moved down to London in 1999, and was happy – and at that point, knew what I wanted next – to transition. Forward a few years, and I ended a job on bad terms – something I’d never done before. I was genuinely upset to the point of causing urology issues, which hospitalised me for five weeks. During this point, I was subjected to a lot of tests – but the registrar’s ears did prick up when I said “Huntington’s” was what my father had. I’d presumed I’d been tested, but no, as it turned out later. After five weeks, no fault found. You can imagine I was depressed, with everything happening. Having my then landlord kicking my door when drunk was a trigger for my first suicide attempt. It was then, the following morning, that I was chatting to a psych at the same hospital I’d just been speaking with urologists for five weeks to. I laid it all out – and told him everything… and they decided, at that point that I had a lot on my plate, which I agreed with.
So, why do I mention this? This was the point where I decided, that, whatever I had left of my life; I was going to do it on my terms. Moved back to Scotland, and knew more-or-less what I wanted to do about transitioning – it just needed some stability.
Started a job 2002 – basic but it allowed me to start getting the stability I needed to transition (from male-to-female) in 2004. At that point I didn't quite know where I was in terms of sexuality BUT I did have a very strong rock who lived in Spencerport, nr Rochester, NY, USA. We both opened up with each other so much.
In the background, I went to my new doctor in Dundee, and the first thing was Urology – who then referred me to Neurology – then Genetics. I was tested late 2005 when it was proven that I’d inherited the gene that causes Huntington’s, and I was at risk from it taking over me. At that point it confirmed what I already presumed – so it wasn't so much a shock, as it might have been to someone not so used to the issue. Had to say that my sister and brother did not inherit the gene, so there is no danger of it continuing down our family line, based on my current medical understanding. As I was being told this, I was kind of ready for it – although my colleagues at the time were then being told of work being off-shored to Bangalore just before Christmas (which never happened in the end beyond an initial few calls) opened up my now-legendary week of severe hell.
In subsequent months I met Claire, then expanded on that by falling for Caroline, a former Dundonian who lived in Royston, Hertfordshire. Came south in 2007, started doing a lot more of what I wanted to do, rather than just what I had to do, to get by. We've now been together six years and one month. Work and being asked to do so many things has been positive, very worthwhile, and I even managed some more study before things got worse.
I’m now 34… and cut forward to a meeting at Charing Cross GIC a few weeks back. Now, since the move from Royston to WGC, a lot of things have been up in the air. HD clinic being a few days after the move, so that was postponed at our request. Now, I was meeting a doctor re gender issues, but as he’s never met me before, so I went from the top. Pulled out the book – brief discussion. Partner works in Stevenage – brief discussion of the A505. Mention of HD – a full-on, in-depth chat. He’s of the impression, as I have even in the last 6-12 months, that this might be the start of the HD starting to manifest it. I’m at the age where he started developing problems, and apparently, from the father’s side is usually about the same or earlier. I forgot who the “famous” person with HD was – but it was Woody Guthrie, another name that came back to me afterwards.
I bought a stack of books in the last few weeks, and one of them likened Huntington’s to be the worst bits of both Alzheimer’s Disease (forgetfulness, knocking things over, and the rest) and Parkinson’s Disease (rapid, uncontrollable movements), with temper and violence. There is no cure, and with it being 1 in 10,000 or so, it’s common to cross even medics who need to be told twice about it. Now, I’ve been so careful with the anger over the years – indeed I've not been anywhere near as aggressive. There are always times it will happen – make no mistake – but not as violent, or everyday. A positive aspect of transitioning, perhaps, and one that I may well be proud of. (Urology problems were also cured by starting on HRT).
I am lucky in so many things in life – indeed, knowing that I will be struck down slowly by something like my father (who died at 58 from pneumonia after being ground down over the previous 20 with HD).
But, I digress. Forgetfulness is starting to be a bane of my existence. Managed 35 miles without my purse the other week – not for the first time. Caroline has noticed I’m starting to forget a lot more these days. We have an appointment in the coming weeks back to Addenbrooke’s Hospital BRC, and we’ll discuss all that then.
Where do we go from here? There may well be developments in the future, but the truth is, right now, I will eventually start to be taken over by all of this. My dad was quiet, but went to barely saying anything towards the end. That is assuming (a) no miracle cure or treatments, or (b) nothing speeding up untoward. B is less likely, and I've mentioned before that a foreign millionaire is spending a lot of cash on the subject. As to whether this is found before or after they succumb, I’m not sure at all.
For those of you who meet me in person, or speak on the phone, or communicate with me in other ways, then how does this affect you? All I’d say is please don’t be offended or upset if I forget something, can’t remember a name, call you the wrong name, or moving my hands, feet, arms, rapidly. None of this is voluntary, I can assure you.
It might well be that I am starting to coming to the end of my line – but, it’s been one hell of a journey. I think I made the right choices, am happy, and content. I did want to be able to look back – when the time came – not with regret but with happy memories.
Suzy xxx
- Current Location:Welwyn Garden City, Herts, AL8 6PD
- Current Mood:
peaceful - Current Music:Radio in background
In any case, I’ve been hard at work, as has C. We’ve been up and down emotionally, health and the rest. Now, for the first time in a bit, I’ve had some time to take it a little easier (helped by the fact the book backlog is more-or-less done – last one has gone to print too).
Eventually I’d like to get out the house – well, out of WGC – at least once a week, and then building it up as I can. After all, I’m in a very well served area!
Speaking of travel, C sold the LessieMobile3 last week – finally – and I am proud of her for seeing it all through on her own.
Charing Cross GIC appointment – came and went. To give praise where it’s due… was seen quickly, on time, and with no cancellations etc. – so why can’t it always be like that?
Still listening to the Dundee United matches most of the season, and the change of manager appears to have brought out the best in Johnny Russell – although now he’s injured for the next few weeks with a fibula injury. Still, we still beat the next door neighbours 2-1, on their turf, on Sunday.
Right – off to have a quick relax before bed, and in the meantime… here’s a question interview that I did for Sister Act newsletter…
Thanks to each and every one of you for all the birthday wishes. Were going to go out for dinner, but rather cold out at lunchtime so I brought home dinner. Might sound lazy but we've had a lovely evening. I'm okay - emotionally and physically - and have had a good day. Will try to catch up on the rest of the thank-yous tomorrow.
- Current Location:Welwyn Garden City, Hertfordshire, AL8 6PD
- Current Mood: good
Happy New Year peeps!
We started the year quietly, and have had a busy time since. Hence these are my first personal blogs of the year.
I've been rather busy of late, trying to squeeze in a lot of things, before and after our recent move.
I was talking with Caroline aka C - or on LiveJournal 
cmmathieson last week and decided to give the business a bit more time, still one day a week for the PSV Circle but leaving London Lesbian & Gay Switchboard after a bit more than three years. I've tried a number of times to rearrange my work to fit everything in, but I feel that I've had some good times, and met some great people, and helped out a lot, and got the word out now and then. (Indeed - the image shown above is that when we were out with the Women's Group after a Million Women Rise march/and the LLGS stall).
So, I've spoken with them, and explained why I need to go. I was thanked for the time given, and told I'd be welcomed back if/when I could. So, that's gone smoothly - with nothing majorly wrong, just gives me some more time, and I can get a weekend off most of the time.
Three good years mind - and a lot of work has cropped up since I applied back in 2009 when we heard PFH in Cambridge had a one-year contract - so I would be able to do something, rather than nothing. Then in 2010 an email from a Mr Wootten (from Chinnor but depot was just outside Chesham)... now I didn't expect that, but it's interesting to look back upon the last three years. I’ve gone through the Woottens/Tiger Line year that I did – with the highs and lows, plus all that has followed since. I now do timetables on a commercial basis, self-employed, as you well know – but it’s something I enjoy, which I will come to later.
This morning I was emotionally okay but a little drained. I was the same yesterday, on and off. Weird. I will be calling for an appointment with the doc I saw last week (sweating for a while, although not doing so today – maybe as it’s much colder outside?) and we'll see if it's anything. I'm drained physically, but I am not in a blaming mood. In other words, stayed up far too late the night before last, and also rather later than I should have done last night! So I am okay, but a bit tired - but all my fault, honest! :-) Okay, so why was I up late on Saturday and Sunday nights? Well, I was enjoying this new thing called a weekend off too much.... no Pinot Giorgio was harmed in the making of this post.
A recent visit to Charing Cross with Caroline found that the medic had called in sick that morning. Having said that, I was coming along – partly as I never miss a trip to London unless I’m physically sick (and even one day I went in for an interview after throwing up all night – but I digress). I decided to use to use the time to ask for an appointment – having failed in 18 months, what gave me the thought I’d get one? Well I did within a week (although multiple messages initially were left on my voicemail with different days/weeks and they didn’t notice the new address we both gave them, as the appointment letter arrived with a Redirection label……) Nevertheless I'm currently impressed.
Mental health – well there is a lot of stuff in the media right now that could make anyone tear their hair out. But – times are good, and I’m actually now managing quite well on. About 10 hours have passed since the bit at the top was said on FB and I’m still feeling okay. In other words – I’m not getting upset, depressed, unhappy – only when needed – because I want to be strong.
Christmas and New Year – gifts for Christmas included a series of DVD box sets – we picked up a 2nd-hand TV/DVD combi when we were in Hemel looking for Fridge/Freezers. So, what did we get? Plenty to talk about… but I did enjoy watching Rob Van Dam. One of the few wrestlers who genuinely does his best to put on an extra-special performance. I was listening to Joey Styles commentary on a match of RVD vs. Tommy Dreamer. The interesting quote was “you could put these two in an empty building, ask them to fight for nothing, and they’d still do it” – a compliment to the old ECW work ethic, combined with RVD’s amazing confidence. His first TV taping was 20 years ago, back on the old WCW Saturday Night…
… so why did I say that? Well, it’s the equivalent of what I do now. I am not on salary, but maybe one day. For now, I am happy with what I am doing – and it’s a key to the fact that I want to work, and type right into the evenings – but I’m now happy to sit down and relax!
Tomorrow is a special day…. but in the meantime, I leave you with the question posed by an agency "if you were a biscuit, which would you be?" Jaffa Cakes - no-one's quite sure how to pigeon-hole me either!
- Current Location:Welwyn Garden City, Hertfordshire, AL8 6PD
- Current Mood: content
Sorry about the lack of blog posts of late – I’ve not been abandoning you all, just been busy.
Mentally and relationship wise, we’ve been up and down, but now is good.
If we survive together till the end of the year, we will have been together for 69 months… or six years if we make it to 31st March 2013.
“Quiet Christmas” again – and this time, we’re going to be having the first in our new home! A lovely black and magenta tree and we’re happy. Actually got gifts under the tree, as opposed to in a box – well, we have the space (for now!)
New hairstyle is a brown-black fringe, and slowly getting lighter perhaps? We’ll will see how it works. A bit dykey but still femme with it..
We’re settling down emotionally and financially in our new place. It may be some time until all the boxes are gone, but one or two may need to stay a bit longer. Nothing to do with being lazy but just the best place for excess stationery and so forth. Main room is good – almost how we wanted it, and after Christmas we can do a bit more. Back to doing work for LLGS, BABUS and the Circle, in addition to my own - and indeed the BABUS website got a parting mention in the Walks section of The Times (Saturday yesterday).
Now – off to listen to the rest of the Dundee United match! Merry Christmas and a Happy New Year to all my readers – apologies that we didn’t have time to write and post the cards that we bought. Even now I am catching up, but it’s 23rd December 2012 – and in 48 hours almost all our Christma preparations ill be over for another year!
- Current Mood:
okay
#randomchocolatetuesday – Deep fried chocolate in batter… sorry, Orange Flavour Chocolate Festive Pie
We’ve talked about a lot about the unhealthy foods of Scotland – and damn proudly too. I used to enjoy a DF pizza supper, and the Deep Fried Mars Bars have attracted a cult following. I did hear a story of the Deep Fried Slimfast Bar – served in batter, with double chips, and still only 40 calories!
Anyway……… it would be fair to say I’m eating better now, but there is a reason I talk about the above. Caroline was feeling in need of refreshment last Saturday, as we arrived in Stevenage, and she fancied a stop in McDonalds. Now, the place was mobbed, with the younger residents of the new town, but we got what we wanted and found half a 4-seat table was free.
As I usually enjoy their fruit pies, I was curious as to what this Orange Chocolate was, and it was sold as “a crispy pie with an orange flavour chocolate filling”. I was thinking some fruit, perhaps candied, and some chocolate. No – apple pie batter and a bar of orange-choc. Think battered and shaped Chocolate Orange, and you’re on the right lines. It’s deep fried, battered, orangey chocolate. It’s limited edition. It’s McFestive. If you don’t mind me saying so, it’s f******g gorgeous. It’s also flying out the doors. Go now… as to exactly what a deep fried bar of orangey chocolate in batter has to do with Christmas, I’m not sure. But, don’t let that put you off – and I am tempted to walk in and order two with a salad… lol
- Current Mood: mellow
#randomtimetablemonday – United Counties timetable book, 24th March 1963
Now, here’s a change – certainly random. Saw this for sale online – but I’d never seen a book like this for this operator, and not one almost 50 years old! The book is in a smart black and green, with the county crests of each of the ten counties served by UCOC. The cover carries a graphic of a Bristol Lodekka double deck half-cab front entrance bus, and was sold for the price of 1 shilling in old money (5p in new money), or two shillings to include postage. The owner has written in pencil the name “Aylesbury 22.6.63” so was presumably bought in this town, on this date.
The book is similar to most timetables of the era – printed in monochrome with colour on the cover. There is also a fold-out route map, and calendar for 1963. Adverts include their own coach services, plus resturants, estate agents and auctioneers. Indexes, parcel agents and full timetables are shown clearly, and services as far away as Cambridge. (the Hitchin – Ashwell – The Mordens – Royston service then had one journey to Cambridge, which only picked up scholars after Ashwell). The express network included two variartints to London – via the M1 motorway or via Woburn, Luton and St Albans, and local services went to Peterborough, Stamford, Oakham, Leicester, Corby, Kettering, Northampton, St Neots, Papworth, Bedford, Baldock, Letchworth, Buntingford, Hitchin, Aylesbury, Buckingham, Oxford, and indeed, Bletchley and Wolverton towns, along with Newport Pagnell – before the days of the Milton Keynes new town. (For those who have seen historical timetables, these routes were all in service number order, as opposed to “sections” for each area, as used by some i.e. SBG).
Train times were not included, but long-forgotten rail routes (such as Welwyn Garden City to Luton and Dunstable) were included on the map – presumably to aid the public. Then, rail tickets could be used on the bus between common points, and vice-versa on payment of a supplement, between two connected points, like Cambridge and Bedford. There were also facilities to accept other operators tickets in areas where two services ran i.e. UCOC 91/188 tickets would be taken on Eastern Counties services. It was also interesting to read that tickets for Service 266 between Kettering, Thrapston, Oundle and Peterborough, would accept British Railways tickets on Sundays only, at no extra cost, to make the return journey (I can assume this was when what is now the Nene Valley Railway was running as a BR service, but didn’t run Sundays?)
Allover a very interesting book… one that I’d love to give a wider audience to one day. Who knows? Well, it’s been opened up here :-)
- Current Location:Welwyn Garden City, Hertfordshire, AL8 6PD
- Current Mood:
nostalgic
- Current Location:Welwyn Garden City, Hertfordshire, AL8 6PD
- Current Mood: okay
#randomcoffeewednesday Sainsbury’s Dark Roast Freeze Dried Instant Coffee
In this post, you may recall I mentioned the gold-topped jars (and the blue decaf) Sainsbury’s Gold Roast Coffee. Well, since then I decided to try a few more, including this Dark Roast Freeze Dried Instant Coffee. It’s the same high quality Arabica beans from Africa, just roasted a bit darker, to 4/5 instead of 3/5 on the flavour scale. This was nice, without getting too bitter. I’ve drunk it a few times since, and it’s on the “good” list. Some darker coffees do get bitter, but this is still nice enough.
- Current Location:Welwyn Garden City, Hertfordshire, AL8 6PD
- Current Mood: good
