Black Holes and Revelations.

Today was always going to be scheduled as a stupidly busy day.  I’ve got my radio show tonight, and the hubby’s working lates – which means I’ve got to tackle the monsters into bed before half seven, make sure they’re both happy and then fiddle around with my levels.  Then, the local hospital decided to schedule two appointments for me this morning – one at ten to nine, and one at eleven a.m.  The first appointment would have to be at school run time wouldn’t it – when I can’t make my own way to the hospital because of the crutches.   So, luckily, my MiL said she would take the monsters to school as long as they were both up, dressed, breakfasted and ready by the time I had to leave so that she didn’t have any fights.  The male shaped monster was so ready he had his coat on as soon as she walked into the house.

As early as we set off for the hospital any time between 8 and 9 am on a weekday is rush-hour.  There’s no avoiding it.  So, we arrived only just on time.  Luckily the Gynaecology department has it’s own entrance and so the hubby was able to drop me off right outside while I hurried in as quickly as I could with the crutches.  I was still slightly out of breath when I arrived at the reception desk but just for once, the receptionist wasn’t the wife of Godzilla.  She was really pleasant and explained clinic had been delayed by a few minutes anyway so I had nothing to worry about.  Thrown slightly off balance, I hobbled over to a seat and picked up a magazine – expecting it to be three years young.  Another shock, it was this actual weeks copy of a glossy tabloid effort which melted my brain cells while I was reading it, but hey, it could have been a lot worse.

Anyway,  the appointment was another revelation.  I was expecting to be ‘ummed’ and ‘ahhhhhhhhhhhed’ at and then be told to attend another three dozen appointments while the clever people decided what was going on in my belly.  Well, that didn’t happen.  I was listened to – attentively; I was examined – thoroughly (I’m still in pain from that – 7 and a half hours later); I was listened to again – attentively and I was offered a form of pain management.  Zoladex is a man made hormone which is injected into the belly to reduce the production of oestrogen.  Basically – it’s going to stop my periods and so therefore, if the pain is Endo, then it should stop the pain. If, after 3 months worth of Zoladex, I’m still in absolute agony, then they’re going to refer me to the surgeons because then they’ll doubt it’s endo (which I’m not particularly happy about as I know that the endo could have spread, but I’ll cross that argumentative bridge when I come to it).  I’ve to go back every month for another injection of the implant and go for a pelvic scan and go back in 4 months for another chat with the Dr.  Lucky me.

We then decided we’d have enough time to make a mad dash across the town to drop something off for a lady from Freecycle (which I now help run.  It’s incredibly insightful.  Most people are lovely and appreciate what the admins of the site do, but then you get some real weirdo’s who either think you’re glued to the page 24/7 or think that you’re helping to run it not to be a part of the local community, oh no, they think you’re there to get everything for free and then to be abused.  I love it!).  We only just made it back in time for my 11 O’Clock appointment.

After getting lost a couple of times, I eventually found the oral and maxillofacial department.  Not to have any dentistry done, no.  At the end of January/beginning of February, I had what can only be described as a ‘horn’ growing on the side of my nose.  Sometimes, I affectionately referred to it as being my second nose.   Well, anyway, it turned out to be a cyst, which got itself infected and so grew other cysts on top of it, and became the only thing I could see out of my right eye.  I became a hermit as everyone who looked at me stared at the horn.  To be honest, I can’t blame them.  I would have stared too.  It was hideous.  Anyway, the horn has now shrunk to minuscule proportions, and so the surgeons are at last happy to remove it.  In April.  While I’m awake.  Lucky me.

So, after galavanting around the local hospital and the town the whole morning, we decided to be incredibly unhealthy and treat ourselves to a McDonalds.  The great golden arches of obesity.  Well, I’ve just been put into the beginnings of a chemical menopause at the age of 33, so why not?  I have a Maccy Dee’s about twice a year if that, and today one was needed.  So there.  And then I had the happy task of editing interviews for tonight’s show for the first time in around 12 years.  Luckily, it was just like riding a bike.  Except that I didn’t fall off.

All in all, so far today has been relatively good.  More revelations than black holes.  Just the way I like it.

It’s all about the timing…

tus lots of people

If you’ve got a Facebook account, you probably can’t help but see posts from people going on and on about paying for posts to reach people, or that Facebook are restricting the amount of people who can see your posts.  They’re talking out of an orifice which is at the bottom of their spine.

The Unsigned Side at this moment in time has 445 ‘likes’ on the page, and 98 people talking about it. One post has had over 1,100 views, as demonstrated in the photo above.
I haven’t paid to promote this post – the only thing I’ve done to it really is pin it to the top of the page and tag relevant bands into it.
I suppose the reason for this post is to say – it’s not about paying to promote the piece, it’s posting at the right time with the relevant information. The more you post, the more your page is going to be looked at, yes it’s true. But it’s also about the quality of the information you’re posting and the time that you post it.
If you’re in the UK and posting about something to do with your band when most of your demographic are at work, no one’s gonna see it. If you wait until around 9 pm(ish) though, then most of your target audience will probably be online and so more people will see it. Same if you’re a supermarket after the housewives. No use posting at 9pm(ish) on a Saturday evening when the house wife is probably partaking in a glass of wine after a bloomin hard week of monster tackling and shopping. Nah, they’ll post at 10am on a Tuesday morning.
Facebook isn’t making anyone pay for anything. Nor is it restricting people from seeing your posts. It’s just making you more aware of when is probably the better time to make a post to reach a bigger target audience by showing you how many (or how few) people are seeing what’s happening and interacting on your page. It’s about using what tools you have got there for free wisely.
Use the information you’re being given freely and make it work better for you. The proof is there that you don’t have to pay anything to get lots of people to see your message. Just make sure you time it right and it has the right information and enough people will share, like it and talk about it to show up in everyone elses news feeds.

Radio gaga

Thursday night is my favourite night of the week.  Always has been – even when I was a teenager.  Thursdays meant it was training for high-jump at Sale Harriers.  Oh when I was able to soar through the air and land elegantly on my back on the crash mats…  But I digress.  Again.

Now, Thursdays are my night for the radio.  I host a show called The Unsigned Side, which is purely about unsigned music.  I’ve been doing the show for over a year on and off – well, mainly off because of the blooming technical issues – but it’s back now.  Since the middle of January, I’ve only missed one show and that was purely because it was the female shaped monsters birthday.

The show is fraught with technical issues.  A couple of weeks ago, the female shaped monster pulled the microphone out of the computer so I could no longer speak to the listeners (not such a bad thing but sometimes I need to talk to introduce a band).  On valentines night the broadcasting app just upped and died half way through the show.  Did I mention I do the show from my living room, in my pyjamas half of the time?  Oh, the glamorous life of a DJ on a tiny radio station with no budget playing music by bands who aren’t mainstream – and you know what?  I bloody well love it.

The other week I was watching the Brit Awards, and becoming more and more disillusioned as the ceremony went on.  Where was the controversy?  Where were the mad Yorkshire men throwing buckets of water over politicians or mooning very famous weirdos on stage?  Where were the calls to arms by some Northern brothers?  No where.  Apart from the idiotic fat man in a suit shock horror swearing before the watershed – which lets face it – was probably scripted anyway.
While award after award was given away to none-de-script mainstream clones, my rantyness bubbled over and I started naming who the radio show would give the same award to.   Except the radio show doesn’t have a budget or a sponsor and certainly doesn’t have ludicrous spotty effigies of Britannia to give away to clutter up a deserving mantelpiece.  The problem is that while I think what I’m writing at the time is irreverent nonsense,  someone else thinks ‘actually, she could be on with something there’, and so my tongue in cheek announcements were given meaning and taken seriously by the people who I lauded.

So tomorrows show is all about those 10 none award winners.  I’ve done a couple of interviews and have got all the music ready.  I just now need to make sure I know enough about each of the bands who have ‘won’ absolutely nothing, apart from some airplay on an internet radio show that very few people listen to anyway…

Hilariously, on the shows’ Facebook page, someone’s asked if I wanted any publicity on a status update.  I think people who like the page, who don’t listen to the show, seem to think that it’s a proper show.  You know, in a studio, with a budget.  I replied that we always appreciate people talking about the show and sharing links and things, and his reply seemed a little huffy.  The thing is, I’ve worked really hard at getting every single one of those likes on that page.  I tweet about it, I Facebook about it, I email people about it, harass bands and managers to send me their music to play – all in my spare time.   When the monsters are at school or in bed is my few minutes to promote the show.  I wouldn’t want to pay someone else to do that, no matter how good they are at it because my way is working.  I know the show inside out, I know what the listeners want and I know how to feed them updates.  It’s part of knowing how to tailor PR to the product.  I’d be worried that this guy (whose spelling wasn’t even spot on), wouldn’t get that.  Or that he’d try to sell the show out and post irrelevant bollocks about cats, ‘keep calm’, pictures of Willy Wonka looking pensive or pictures of Sean Bean stating that one does not simply ask an independent radio show to squander money on unknown PR.

Anyway, moving on…

If you’re around tomorrow night, tune in to http://mixlr.com/sfr for a couple of hours of excellent music and random ranting.

Of phone calls and emails.

On Monday, our car which we’ve had for one whole year was due it’s MOT. Commence nail biting and wriggly tummy time. Although, to be perfectly honest it should pass with flying colours once the horn was fixed. Ah, the car horn. My hubby (the cars main driver and legal owner) had known it was a bit dodgy for a good few months but decided (as is his wont) that it would be fine until the MOT. Of course, it wasn’t as simple as all of that. There was an awkward fault with it, which would need a diagnostic which would cost at least £20, and up to a possible £250.
Not surprisingly, I wasn’t particularly impressed when this information was relayed to us over the phone – especially as they’d had the car for the last three hours anyway. After a few growls of annoyance at the hubby, we agreed that they could do the diagnostic on Wednesday (today) and that his mother would loan us the potential £250 to fix the horn until we got paid.
This afternoon, we had a somewhat nicer phone call from the garage. It’s only going to cost £50 to fix plus the £40 for the MOT, which we can just about afford. I’ve just got to wait for the stomach churning phone call telling us if the car has or hasn’t passed it’s MOT today. Needless to say my fingers are very firmly crossed. As are my toes.

Just before I started composing this post, the male shaped monsters speech and language therapist called. We’ll call her Ms SALTish for the purpose of laziness in the blog. Anyway, Ms SALTish isn’t the most switched on of people. She seems to spend more time apologising to us for things she’s forgotten to do then she spends giving the male shaped monster his therapy. We actually sacked the last one and filed a formal complaint about her uselessness – anyway, I digress… Ms SALTish is nearly as useless. Granted, she’s got him into a specialist language resource – but that’s the only thing she’s appeared to have done. Apart from really, really annoy me, that is.
Nearly every time she had a session with the male shaped monster at our house, where he is in his own environment and at his most comfortable, she would repeat ‘I just can’t see it’ in regards to his (frankly, quite obvious) ASD. I have to restrain myself from bellowing, well you’re the only bloody person who can’t, maybe if you’d open your eyes and get off the cloud you’re on, you would see what is clearly there. I’ve had to leave the room a few times to calm myself down.
Once, she had rung up to ask why the male shaped monster wasn’t in school. Well, because he’s got blood tests at the centre in the city. School are fully aware of it. She went on state we should have let her know as she was at the school now with a very important and busy person. I hung up and asked the hubby to contact her back with the white lie that I’d lost my signal (I hadn’t. I was just that angry at the cheek and self importance of Ms SALTish that if I hadn’t hung up, I would have shouted some things which would have made matters a lot worse). Anyway, it transpired that Ms SALTish had forgotten to inform us as well as school that she was attending with the busy person. Apologies, to be fair, were forthcoming. But, it wasn’t the first time she’d forgotten to keep us and school informed of something. His new school and therapists are due to visit his current school tomorrow, something Ms SALTish should have been communicating to the schools, but which we ended up doing because she hadn’t got around to it.
A few weeks ago, I booked to go on a special course for children with communication and language special needs – perfect for the male shaped monster. The speech and language therapist who is running it happens to be the one we sacked. She didn’t feel the male shaped monster was ‘quite right’ for this course and neither did Ms SALTish. Was I informed via email (the way I’d applied)? No. I was informed in a completely unrelated phone call – in which I bought up the course. Both the therapists had been chased up by a Parent and Carer forum I’m a member of and they both still forgot to contact me. So, I asked why my son who can not speak at all would not be suitable for this particular course, which sounded perfect for him and us as a family to attend? Oh, because he understands everything, was the reply. Oh does he? Does he really? Does he understand that he’s changing school because he’s different and is going to have start all over again making friends? No, he doesn’t. Does he understand, when he wakes up at midnight that he can’t watch CBBC because it’s not on at that time? No he doesn’t. Does he understand that he’s hurting Mummy when he’s smacking her in the stomach and on her dodgy foot? No, he doesn’t. These therapists have spent the total amount of 6 hours each with the male shaped monster. Each time has been on his terms, in his environment where he’s happy. He hasn’t understood everything they’ve said to him, but they’ve been that determined to deny his ASD, that they’ve conveniently not noticed that.
We’d also been told that a makaton course would cost £30 per session – and that there were four sessions – so the total cost would be £120. We declined, as that would be far too expensive. We’d look up tutorials on the internet etc. Today, we’ve been told it’s £30 for all of the sessions. Just a slight difference. I think Ms SALTish is feeling slightly offended by the fact I’ve asked to see any reports about the male shaped monster before she sends them onto the other medical professionals working with him. But, wouldn’t you?
And, breath…

On a happier note, I had a very interesting and promising email this afternoon. I’m crossing everything that isn’t crossed already that it comes off.

End Oh Metri Wooooooooooooeeeeeeeeeeeeeeeee Sis

I’ve mentioned a couple of times I suffer from a condition called Endometriosis. It’s not a pleasant condition, and because it’s not really one of the more ‘trendy’ conditions, it’s not particularly well known. When I’m having an Endo attack, I’m not very pleasant either. In fact, I turn into a bitch from hell.

When I say it’s not one of the ‘trendy’ conditions, I don’t really know how to express what I mean without potentially upsetting a lot of people. No condition is pleasant – and I wouldn’t ever wish any condition on anyone. But the ‘hidden illnesses’ (regularly making the rounds on Facebook in various status updates and photos etc), often miss out Endo. Mainly because not a lot of people understand how horrible this particular condition can be.

Endo is mainly thought to affect women of a ‘certain age’ – you’re generally looking at women aged 35+. At one point it was practically impossible to get a diagnosis if you were younger than that. It was also widely thought that the condition goes away after you’ve had children. My so called ‘Specialist’ actually discharged me when I was pregnant with the female shaped monster. Another common misconception is that the condition is only painful while you’re ‘on’.

What a load of bollocks.

I have always had horrible periods. To the point where I was removed from a GCSE exam aged 16 because I was bent double with huge tears sloshing down onto the exam paper because of the amount of pain I was in. They have always been irregular. Both classic symptoms of Endo. When I’m due on my period and during it, my belly swells up so much, I look around four months pregnant.

I was diagnosed as having Endometriosis Adenomyosis when I was 24. Just before I received the results of the laparoscopy, my then (male) boss asked me if I had considered a hysterectomy so that I could attend work daily (It was a dead end job in a nasty call centre which I hated. Needless to say I didn’t stay working there much longer). The adenomyosis part of the diagnosis means that I have Endometriotial scarring inside my womb lining as well as on it (it’s more complicated than that, but that’s the easiest way I can express it. More info here).

Moving on almost 10 years since my diagnosis and two babies later, I’m in constant agony with the endo. I know it’s endo because the pain is very specific. Not something I can really describe, apart from it’s a burning sensation that gets deeper and more intense the longer it stays to play. An attack can start with a short stab of pain just below my right hip. It will then go away for a short while before coming back a little bit stronger. Then, in an almost playful way like hide and seek, the pain will come into my back, just below my kidneys, and intensify to something akin to somebody kneading that spot – but they’ve been doing it for too long and too hard. While that’s going on, I’ll get a spasm of sharp pain in my stomach that’s strong enough to make my eyes water along with the burning sensation on my right hip again.
This fun little cycle has been known to continue for around two weeks. It will start a couple of days before my period, last right through the bleeding and end a couple of days after. When the pain’s really really bad, I start throwing up. At the moment, it’s bad enough that the painkillers my GP has prescribed aren’t working anymore. I’m on tramadol (known in my house hold as tramalamadol for it’s slightly wappy making effect) and amitryptaline. Tonight, they’re succeeding in numbing the pain to a richter scale of seven, when normally the pain is off the scale. When I first started taking them, I was almost catatonic with the numbing effect. Now, you wouldn’t be able to tell that I’d had any.

I’m back at the hospital on Thursday to become re-acquainted with the Specialists, as everything else I’ve tried hasn’t worked. I had a coil fitted, which was supposed to stop the periods all together and make my life a happy, pain free one. It worked for one month. Ever since then, the endo’s got worse. Not better. My periods are as irregular as they ever were, my PMT can be explosive and the periods themselves are evil, long lasting and heavy. I got put on the pill to try to combat it. I forgot to take it. I tried to remember to take it, I really did, but when your morning routine is made up of trying to stop your autistic son from going into overload mode, it becomes a somewhat less priority. By the time I’ve remembered to take it, my next period is about to start and whole cycle starts again. I’m not even sure if lazering the endo is an option because it’s endo adeno. All I can do is wait and see what the consultants say – but rest assured if they say I should be cured because I have kids, there is every chance my crutches will end up wrapped in a knot somewhere they shouldn’t be.

Why am I writing this somewhat long, gory and graphic post of me at my worst? Well, March is Endometriosis Awareness Month – world wide. In the UK we’re concentrating on the 4th – 10th of March. Endo doesn’t just give women pain around their cycle and bad tempers – it causes sever depression (tick), pain when having sex (I’ll be honest here, I can’t remember the last time the hubby and I had sex when I wasn’t in complete and utter agony. Don’t blame him, I hide it from him well), infertility (I’m one of the lucky ones, and I count my blessings for my monsters hourly), bowl issues (tick), cystitis (cranberry juice is my best friend) and can lead to other conditions such as ovarian cancer in the worst cases. Endo scarring can also occur on the bowels, kidneys, lungs, intestines and pancreas.

So, next time you have your period (or your partner, wife, female colleague), spare a thought for what might be happening behind the painted smile. A hell of a lot of women with endo grin and bear it, believe me, I know. But, inside, they’re screaming.

The Female Shaped Monster

I’ve talked at length about the male shaped monster and only mentioned in passing my first born – the female shaped monster. She’s seven years old, stupidly tall and as daft as a brush – but then again, with us for her family, you really couldn’t expect her not to be totally daft.

My daughter is beautiful. There’s no arguing about it. And, I’m not even just saying it because she’s my daughter. She really is stunning. She has gorgeous hair, that actually does as it’s told, isn’t too thick, bushy, frizzy, curly or fine – it’s just right. She has amazing eyes that change colour slightly depending on her mood, but that are always bright. She has to wear glasses sometimes as she has double vision (sadly inherited from me and my mum), but they just somehow make her even more beautiful when she’s wearing them. She has excellent style when she’s not insisting on wearing totally pink, and she has a naturally sportily shaped figure.
She’s also incredibly clever. She’s attaining above the national average for her reading ability, just above the national average for writing and the national average for maths. She has an elephantine memory – remembering events that happened when she was still in nappies and the pram. There’s one place we can’t go past without her chiming up ‘Remember when you fell down that hole, Mummy? When you were pregnant with the male shaped monster?’ That incident happened when she was 20 months old. She has no business remembering it now…

Her daftness is possibly her most lovable trait though. I was saying to a friend a couple of days ago that she’s as clumsy as me and has her dads lack of common sense. My friend nearly spat her coffee out chuckling. Mainly because it’s so true. When she first started school we were receiving daily ‘bumped head’ reports for her from where she had crawled under tables and not known how little room there was… The funniest thing she ever did was flushing her underwear down the toilet when she first started in the foundation unit.
She also loves being centre of attention. What seven year old diva (sorry, girl) doesn’t? It is endearing and a fact of life, but sometimes it can be incredibly frustrating. This evening, while I was doing an over the phone interview with a Scottish band, she came into the bedroom where I was working and started licking my arm. Apparently, she was imitating the cat. I have explained patiently that that possibly wasn’t the best time to pretend to be a cat. Especially as I would have pushed the cat off the bed if she’d have been licking my arm while I was trying to conduct an interview…

I do try and give the female shaped monster special time. Just me and her without the male shaped monster – girly time – if you will.  Unfortunately, a couple of those occasions haven’t gone too smoothly.  There was one evening which we’d set aside for watching films eating crisps and drinking lemonade, until I had a massive asthma attack and couldn’t find my inhaler.  The evening ended with me on a ventilator supplied by two paramedics and an ambulance and the female shaped monster making me a ‘get well soon’ card.  The last time we had proper girly time was at a local farm where we were being keepers for the day (she loves animals).  Unfortunately, this particular farm also has a reptile house with lots of snakes in it – and I’m terrified of snakes.  So much so, I can’t even look at them on the TV or in books.  Yes, I’m that pathetic.

So then, that’s my female shaped monster.  Beautiful, crazy little thing that she is.

Catching Up

So, as I noticed earlier, I’d practically forgotten I had this blog with it being so long since I last updated it.  The ‘Ta-da’ day wasn’t really so much of a ‘Ta-da’ day in the end.  The Mac decided it wouldn’t play with Facebook or Twitter, and the OAP was still having the odd strop, and then the internet completely stopped working for nearly a month because BT were upgrading the exchange our ISP used.  It wasn’t great as I needed the internet to do research for the festival programme I was making as well as getting my regular social media fix.

When the internet finally came back to life, the OAP decided to slow to less than a snails pace.  The radio show was postponed indefinitely as every time we ordered a new part, it wouldn’t fit in it, or was the wrong type or some other such disaster.  Eventually, at the end of October I succumbed and bought myself a new laptop.  No where near as beautiful and beast like as the Sony, but hey ho, it works.  And it works well enough for me to do the radio show.  As luck would have it, after I got the shiny new laptop, my PC guy told me he had completely re-built the OAP for next to nothing, and it was now a new born with an amazing sound card and fast speeds.  I could even do my radio show from that!   So, that was the technical woes finally resolved.  Hurrah!

Regards the Male Shaped Monster – well.  How long have you got?

In September we finally received a diagnosis for him.  He is Autistic, as well as having a sever speech and language disorder.  He’s changing school in April (after the Easter Holidays) to a lovely school which has a specialised speech and language provision, while still allowing him to participate in main stream activities.  He’ll be getting there by a local government funded supervised taxi scheme which has also been paid for by his current school.

We were also awarded DLA (high rate care component) for him.  I hated applying for it, and put it off as much as I possibly could.  There was so much negativity from people around us always saying ‘you won’t get it,’  ‘you’ll have to appeal loads and loads,’ ‘you’ll have to get a Social Worker,’ and so on.  I filled the forms out as best as I could and sent as much information as we had along with them and promptly put it from my mind.  When they’d gone, what was the point in worrying about them more?  It would do nothing but stress me and therefore the rest of the family even more.  Four weeks later, after a particularly bad day the day before, I checked my bank account and nearly fainted.  We had a substantial amount of money in there, from where, we couldn’t work out.  On went several demented phone calls to Child Tax Credit, the Job Centre, Inland Revenue and finally the bank before we worked out it was DLA for the male shaped monster.  I cried when they told me he had been awarded the high rate care component.

I think the reason I cried was because it meant that my beautiful son was disabled.  It bought it home to me how much hard work he is.  How neither me or my husband have had a full nights sleep since he was born.  We have to plan days out with almost military precision.

Weirdly, when we told the Health Visitor that we had been awarded High rate Care for him, she tried employing me on the spot to help fill out other peoples forms.  Apparently it’s highly unusual to get awarded anything without an appeal, never mind before a formal diagnosis (we were awarded the DLA about a week before he’d been formally diagnosed as being on the Spectrum – something I was completely transparent about when filling out the forms).

Every day is new and particularly interesting challenge with the male shaped monster.  Sometimes he can be the most loving adorable little boy in the world – all be it a very quiet and shy one.  Sometimes it’s very clear why his nickname is the monster.  I just hope the transition to his new school in April is going to help his speech and help his confidence in expressing himself.

And now, what about me?  Well.  I got a job in September, and then had to give it up when we got the diagnosis for the male shaped monster.  I’m now his full time carer.  I’ve not been writing as much as I should have – mainly because I just haven’t had the time for various reasons.  I’ve started doing my radio show again, which I adore and missed so much when I was having the technical issues.  I’ve gone down from a UK size 18 to a UK size 12 since the end of November.  My endometriosis has flared up again and is getting uncontrollable.  My asthma has got so bad I’m on a purple inhaler (I never even knew purple inhalers existed), and currently I’ve been on crutches for the last 10 days.

Enough to be getting on with?