2018inreview

in january i got a much needed new wheelchair. i started using a new care agency too and they’ve become the most reliable to date. the next couple of months were spent getting used to my new chair, new carers and going to lots of baby appointments. after a few months of getting all the paperwork together because of her type 1, aubrey finally went off to nursery in march. just in time to welcome ethan to the world in april. when he was only a couple of weeks old we enjoyed our yearly trip to center parcs. i was looking for some new pa’s, as someone was leaving and i was under the weather too. that’s life i guess. i’ve got beaut of a baby boy, so who cares!

it was the perfect summer full of barbecued meat, in what was probably a record bbq year for us. june and july were spent glued to the tv, watching england’s best shot at winning the world cup in a generation. the stress, the celebrations and the goosebumps were real. we went on the run with bey and jay in london, which was goosebump worthy as well. soon our house became all about puppies. we had 7 pups running around the place, digging holes and fighting each other. all made easier by the fact it didn’t rain for 6+ weeks. we hit up some festivals, spent a weekend by the sea side with our favs and had a cuban themed party for alice’s birthday. and yes, all the puppies found new homes. by september we were getting tired and it was time for our holiday in lanzarote. it was a great holiday, we ate, drank, spent quality time with each other and enjoyed bonus sun.

october was spent getting aubrey’s peppa party ready and trying to get our heads around the fact she’s 3 already. next up was the action duchenne conference where i spoke for the second year. i went to london again for a job interview, unfortunately i didn’t get it, but it was an experience. it was all going well for the most part, until i got the dreaded chest infection that put me in the slammer. i didn’t get the blue light treatment, luckily they had me in before it got to that. what was going to be a few days though, turned in to almost 2 weeks and has made christmas time that bit more stressful. i missed the kids like mad, i just wanted to be home with my family. iv antibiotics, chest physio and god knows how many disgusting needles – fun. i’m a bit beat up, but i’m back. i want to say a big thanks to alice, my mum, my bro and my carer sophie for being so kind and helpful.

merry christmas to all the people who have been with us for 2018 and i wish you a great 2019. and to anyone else, up yours!

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thecword

since every other tom, dick and harry is going on about christmas, i’ve got something to say. i’m a bit of a grinch, i’ll come right out and say it. only because it’s all you hear about from september. so just chill guys. well here are my pros and cons of it all. it’s not all bad i guess.

starting with the…

pros

4. new stuff

it’s not all about the presents, that’s what everyone always says. it isn’t really, but let’s face it – we do like getting some new stuff. it makes us feel good and the act of unwrapping is an exciting one. besides when else are you going to buy your own socks?

3. the tree

when all the lights are off, except for the tree you get a warm fuzzy feeling. it takes you back to being a little lad, when we had no idea how much one day we would moan about christmas.

2. food

as much as i hate the amount we over indulge, i do love food. so call me a hypocrite. i get excited about getting and eating all the special little bits that i wouldn’t buy the rest of the year. i mean every cheese i can think of, bare chutneys, expensive meat pie with the berries on, duck pate, proper prawns and posh pancetta. bring it on.

1. kids

the amount of excitement that comes from a little kid is nothing short of amazing. all over a fat bloke in a red velvet suit, some reindeer and putting a tree in your house. it’s great for them, despite all the lies we tell and we were told. remember that feeling? it’s hard to explain, but something we secretly want back. i can’t wait to see the look on aubs face on the big day.

and on to the…

cons

4. deciding 

it can be hard to choose where to go or what to do for it. for yourself or because you might upset someone. disjointed families like mine can be extra difficult. mostly i just want to do something different and almost certainly i never do.

3. shopping

whether it’s buying presents or food, it’s a nightmare from about now. it’s a battle, especially in m&s where old ladies will have your eye out reaching for their cranberry sauce.

2. decorating

decorations, lovely. decorating, not so much. we have a fake tree. you have to make sure the branches look right, get the lights untangled and on in a reasonable manner and evenly distribute the ornaments. it’s seriously stressful and arguments over light placement occur.

1. food coma

where we all eat so much we can’t do anything, even talk. with the biggest roast you’ll see all year with all the trimmings, it’s no wonder. add in the 3 different desserts, the unholy amount of cheese in the evening and the nibbles and you’re there. nobody talking, watching the telly.

here’s a turkey. gobble gobble.

my1stinterview

last thursday, i was in london. i was there because i had my first real job interview. it’s not for lack of trying. i’ve been to uni and done some design jobs, but i don’t have a job. i would really like to have one. i can’t physically work full-time, yet i feel i could be doing something. so the perfect opportunity came up and off to london i went. it was central – muscular dystrophy uk near tower bridge for changing places development worker. for anyone who doesn’t know, basically these are the big disabled toilets. not tiny stinking ones with oddly placed grab rails and sanitary waste bins to fight with. 20 hours, working from home. perfect. in a nutshell it’s all about pushing the cp campaign.

i tried to book care in for the whole day, but i couldn’t. i’m going to look at the issue regarding my care in more detail in an upcoming post. luckily mum was able to take me. i got up at 8:30. we didn’t leave quite on time as someone was running late, not naming names mother. she hates that. mother, mother, mother. we fuelled up big sheila and we were away by 11. the interview was at 14:45 and we arrived 15 minutes before, cutting it fiiine. the drive up took awhile, though not too bad. let’s hope a parking ticket won’t come through from parking in a coach space at the services. if nothing else i was on time, looked presentable and smelled mighty good.

i started off pretty well, better than i expected. i had to do a small presentation and although it was possibly a little short, i did alright. towards the end i probably didn’t do so well, i was slightly nervous and got a bit muddled. i had a feeling i wasn’t what they were looking for. i could do the job and do it well, but i could’ve done better here. 45 mins later, it was back to bristol. i had an email the next day, i didn’t get the job as i didn’t have enough experience. fair enough it was something great for me to give a go and i tried my best. i can’t seem to get that experience that’s the problem. i will keep trying don’t worry about that. employment for me is proving difficult with my limitations and all. i’m just going to keep knocking.

recruitingonfb2

i recently wrote about using facebook as a way to recruit care assistants and my lonely journey to getting the support i need. because i quickly realised nobody would do it for me and there’s no such thing as a safety net. here are my top 8 tips on how to succeed in doing just that in the care crisis caused by our poor “government.”

8. write a job description

you need to be specific with what your carers duties include. like a summary of your routine and a bit about you. highlight the tasks expected of them. also the hours and what days or nights they’ll be with you. avoiding any confusion as to what it entails.

7. decide what information you want on the ad

now you’ve got a job description, you need to decide what you need to put on the ad and certain things you might want. it’s important to get across an idea of what you’re looking for.

6. don’t put too much in the ad, just essentials

i’ve seen some far too detailed care advertisements. you could argue it’s good, they know what they want. err err. don’t bore the poor people and don’t scare them away. less is more – the golden approach.

5. make it pretty

you don’t need to unleash some beautifully coloured great piece of design. however, don’t just choose any old font and slap the info on. comic sans is out of bounds. chuck on some classy gill sans. make it bold, clear and think about what you’re doing. you don’t want a snoozefest or chaos either.

4. post regularly

you might not get a reply the first time round, perhaps even second or third. don’t lose hope. there are the right carers out there, it’s just tracking them down. keep posting and eventually you’ll be rewarded.

3. post on a monday evening

who likes mondays? i don’t. think about it – back to work at a job you hate on a monday, absolutely rubbish day and wanting a new job. that’s where i come in, monday evening after tea. cast your net, the perfect time to reel them in man.

2. be tolerant and friendly

not everyone reads the ad properly. not everyone is as clever as you. you will without a doubt come across some or many time wasters. endless questions. use the classic keep calm and carry on mindset.

1. stand your ground

on the flip side, know when enough is enough. you would have specified days, hours and rates of pay. don’t let someone dictate otherwise. it’s about not what you want, but what you need. if someone is doing this, wasting time or whatever else then stand your ground. it’s number one.

recruitingonfb

almost five years ago, i left home. when i was living at home, it was my mum who did and/or managed my care needs. she always tried to get me involved with managing my care, although this never interested me. i was then living with my partner once i had moved out, so i had no choice – i had to manage all of my care needs by myself.

i used and still use direct payments. at the beginning i employed only personal assistants.  this worked well for a while, however by the time summer had rolled around things began to fall apart. i went back to my social worker and asked for agency funding. after having to do with all my day care myself, it was a weight off my mind. soon enough i began to encounter issues with agency care. it was at this point that i realised how difficult managing care was and there isn’t much of a safety net.

since then i have been through many agencies and personal assistants. it has been very up and down, with some extreme downs. currently for my day care i use premier homecare and although this comes with a hefty price tag unwillingly paid by south gloucestershire council, this is the most reliable care i have received in the last five years. i employ pa’s for my night care and have constantly recruited for this. it wasn’t until last year that i had full funding for this.

originally i posted ads on gumtree and hoped for the best.  it only had so much scope and soon i had to pay to place them. i had gone to peopleplus, who deal with my payroll and was put off again by the cost and the lack of reward for that cost. this is where i turned to facebook. all my pa’s now come through this recruitment process. it was something at first i wasn’t too sure about. there is a certain level of information that i need to give out such as a very brief job description, my phone number and personal info in a risky environment. it was out of need that i turned to facebook. the local buying and selling pages inspired me and i had seen a few little cleaning jobs pop-up here and there. i’m not saying i was the first person to post care ads, but i hadn’t seen much of this. it’s just a shame that there is not a national page for care ads.

they say (whoever they are) that practice makes perfect. by now i’m pretty sure i have perfected the care ad. i started off with a basic format, a small amount of information and potentially not a very personal approach. eventually i put my design skills to good use and created specific ads for the roles that i needed. it isn’t my best work by a long shot, however a slightly prettier advertisement makes a difference. i never have much of a problem finding people for the weekdays, it’s weekend care that has proved to be most difficult. either way though, you have to talk to lots people repetitively and sift through the dirt before you find the gold.

drop by next time for my guide on how to recruit carers using facebook.

respearatory

last week i had to wear an oximeter for 2 nights while i slept, in preparation for my six monthly respiratory checkup. a part from a numb finger, it’s not too intrusive. so i had to be in the centre of town for 9:45am which equals no breakfast for me. somehow i arrived on time, after locating a miracle parking space. i should’ve known the rest of the morning wasn’t going to be such a breeze. altogether, it was about three hours.

the doctor was very happy with me. i have been quite lucky to have had only one chest infection at the beginning of the year. the pulse oximetry test stayed steady above 97 on both nights. parallel to that, my overnight ventilator showed that it’s doing the trick. there was no need to change any settings. however they wanted to do one last test to be sure. they wanted to check the carbon dioxide levels in my blood, meaning they needed some of my actual blood.

after waiting an hour to see the doc, then waiting again for a new ventilator mask that wasn’t going to rip my face apart, i got to wait for this test. all i was told was it will involve my ear. when the lovely nurse finally arrived it was a relief, it’s just like a finger prick test she said. well we do those all the time at home no problem. it was a lie. scalpel in hand she sliced my ear and sliced the same slit again when i wouldn’t bleed. it hurt. i’m covered in deep heat and getting my ear pumped, questioning my existence. this plus a lack of food was making me queasy. i didn’t bleed when she wanted it and i bled when she didn’t. happy days.

i left with a luminous red cauliflower ear and stank like a training room. my co2 levels were excellent obviously, they just wanted to try out their new toy. i don’t recommend. unless you want to look like randy couture.

adconf2

yesterday i attended day 2 of the action duchenne conference for the second year running. it was great to catch up with some familiar faces and new ones as well. i took part in a session for dmd pathfinders “relationships with dmd” where a panel of us shared our experiences. it was a success and the audience seemed to enjoy it. thanks jon who invited me to take part. here’s a rough outline of what i talked about.

everybody talks about the differences in dating or having a relationship as a disabled person. it’s true, there are some obvious differences, yet there are many aspects that are just completely normal occurrences in a relationship or on the way to one. you may get rejected regardless of your ability or lack of. you’ll go out on awkward dates with people you aren’t sure of. you won’t (or shouldn’t) settle if it doesn’t feel right. the process of finding someone is the same.

sex is intimate and can be embarrassing. you put it all out there to someone else and hope for the best. you might want to try new things like “hey let’s try this thing i saw on the internet.” some things will work and some things won’t work quite as well. sex is relatively self explanatory and as long as it gets to where it needs to go to get the desired effect, that’s the main thing. it’s not all about that though. commitment is big. you might run away from it sometimes or feel like you want to, but you’ll know when the time is right.

the point i’m trying to make is, the more normal we look at “disabled relationships” or whatever you want to call them, the more it will become that way. barriers clearly need to be taken into account, but we need to see the actual relationship part to be treated like any other. this was the attitude that got me where i am now shared by me and the people close to me. i live with my partner alice in our own place with our 2 awesome kids aubrey and ethan. duchenne couldn’t stop that, i wouldn’t let it. as soon as you realise what you can offer someone else you’ll be much better for it and don’t listen to stupid people!

and don’t forget, for any couple. if you’re together long enough, you will hear each other fart and see each other on the toilet. unless you’re one of those weird couples anyway. (i left this bit out yesterday).