Thursday the 26th of July 2018
Well… I feel a bit of a tit to be honest. There was me banging on and on about this assessment, being all Kevin about it and actually…. it turned out to be fine. More than fine actually. It turned out to be hugely helpful. I was scheduled to see someone last week but couldn’t make the appointment and it seems like lady luck was smiling down on me because this weeks assessor was different to last weeks. Last weeks was a general Occupational nurse who probably had no specialist knowledge in my condition, but this weeks assessor was a former neurology occy nurse! In short she knew a fuck tonne about M.E., was savvy enough to know that I couldn’t do the majority of the physical bit they normally look at and watched how I walked to and from the assessment room instead. She treated me like a proper human being. Not one who was trying to con the system, not one who was looking for a free ride, but someone who was having a tough time and was asking for a bit of help. She spoke to me with kindness and offered a huge amount of advice in terms of making some gentle changes. She gave me so much information on what is available out there for people like me that my stone heart almost turned to jizz. I was so so relieved that she wanted to help me, it’s not something you come across all too often you know, in any walk of life and when you feel a bit vulnerable it’s so fucking important to your morale. I genuinely couldn’t have asked for more – she was lovely. Sooooo I have been approved for my blue badge, for the maximum term of 3 years and not only that, I have a tonne of resources to go and explore to see if I can make life a bit easier for Christiaan and I.
I’m not sure I can even describe how fucking epic it feels to not have had a battle about this. I had kind of steeled myself for the normal steps involved when you try and access local resources, generally you can be treated like a bit of an oxygen thief, but …. well there was no need. There is no battle. She agrees with me – I need some help and she was happy to provide it. I’m not sure I can quite believe it yet, and I know it must seem like such a small thing to some of you but imagine yourself confined to the house because you can’t physically walk as far as you need to some days. Now imagine having a toddler in those situations. Tough aint it? Actually it’s worse, because explaining to your nearly 3 year old that we’re playing in the garden again rather than going to the beach when he can hear and see it is a bit like torture. It makes you feel shit.
So this badge, well this is going to help me go out with my family without expelling all of my energy walking to and from the parking spot. I’ll not be climbing mountains or jogging round parks, because, well running is for losers, or danger, or posers, but I WILL be able to live a bit more. I WILL be able to get into a coffee shop without buggering myself en route. I WILL be able to park closer to the play park and hopefully have enough energy left over to pick up my wee boy and put him in the swings. I WILL be able to access loads of local amenities that until now have been utterly out of my reach – for instance, I’ve not been into town since I got my new coat months ago. The reality is, I couldn’t do that 10 minute walk now. Now I can park right outside the door, fuck it, I could probably ram the car through the shop window if I wanted to. Who’s going to argue with a disabled? If I’m challenged I’ll pretend I’m asleep…. that normally gets people to piss off.
So anyway, there we go. There was no drama. No humiliation and my faith is utterly restored in humanity. Lady assessor, if you are reading this, thank you for taking the time to see the M.E. within me, you’ve no idea how much it means to me.
I feel like I’ve peaked too soon with my good news you know. I maybe should have kept you hanging on a bit longer but I have literary premature ejaculation…. so, well so there.
In other news Eli’s first day at nursery in big boy pants was a mixed bag, not of piss and shit though. When I arrived I was told it hadn’t gone too well, he was anxious and not relaxing so he’s been holding his piss in for the most part. I say the most part because he’d still managed to piss on them twice, but thats wayyyyyyy less than either of us was expecting. So I was stood there talking to his key worker and the nursery manager and saying “You watch this, I bet he pisses all over the car now” and they offered to take him one last time to the toilet. Off he went and BOOM! Piss in the toilet! He was so so chuffed with himself and after much celebration got a wee yellow sticker for his efforts. I didn’t want to show off and tell him I’d had an actual shit before I came out; sometimes it’s a good thing to let your kids think they’re more clever than you. Only sometimes mind. Too often and they become cocky little fuckers and no one needs that.
So he’s gone back into nursery in big boy pants again today, but I have a feeling it’s going to be a struggle. It’s day three of the shite amnesty and he’s still not given it up. I can go for a week without one so I guess he’s taking after his old maw but Christiaan is very anxious about the lack of shite. I, on the other hand am very anxious about the arrival of shite because when it arrives it’s going to be horrific and I’ll need to burn whatever he’s shat into. My only hope he doesn’t shit in his shoes (he pissed in them yesterday so he does have form), because, well, shoes are expensive innit. I tell you what, this toilet training is fucking grim. I know people tell you to wait until they’re ready and it’s so much easier but he is ready; he went on two 7 hour piss strikes at the weekend. He can physically control his bladder… he just chooses not to because he’s stubborn like me. It doesn’t suit him to do it… so he’s not. We’ll see how it goes. He came home last night and was absolutely knackered by his day there, clearly pissing in the right place is exhausting. I’m not surprised he was fucked though, when I arrived he was running around with one of his wee pals and only had one shoe on – that’d fucking knacker me n all. I’d sent him in with a spare set, they’re like fake crocs and it meant if he pissed on them it really didn’t matter… the trouble is, he’d no idea one had fallen off while he was running around like a loon. His feet with like hobbitses when he got home, dirty little fucker. Tell you what though, he loves a cuddle when he’s tired does this kid, look.
I look at that pic an it’s hard to remember him as a wee baby, not only because my memory is wank now, but because he’s fucking huge. Possibly the size and weight of a small elephant actually. As much as I love these cuddles, he’s all kinds of heavy and I’m not able to hold him for too long without getting really sore. I’d not go back though, not to the small and easy to handle days, fuck no, I hated the baby days. Yessss I know, I’m supposed to be all serendipity mum about having a child but I don’t buy into that horse shit any more than you do, so give me a break. I’m still a better mum that Agnes ever was with Seamus, Eli never once fell off a flat roof. I agree that my standards are low.
I was wondering how wee Seamus was getting on earlier. I know they’re fucking annoying are seagulls but I’ve followed him since before he was even laid in that nest and it’s heart wrenching to see how many of the little fuckers get knocked down round here. There’s a dead one near the top of the street; I can’t tell if its him because it’s now imprinted with volvo tread but I’m really hoping it’s not, he was a stubborn stupid furry little twat but I was fond of him and kind of chuffed he grew up on our roof. I was looking for him last nigh, when I went up to bed. I was sat in my chair and looking out at the biggest sky but I couldn’t see him. Loads of planes, even a few dolphins in the water (just chucking that in casually but I know how lucky we are) but no Seamus. I did see that epic moon though – did you catch it? Big bastard full moon it was.
No that’s not Seamus in the second picture, it’s a FlyBe plane; I know – it’s hard to get perspective from these pics.
So a new moon should, if you believe in all this sort of shit, mean some new beginnings … right? Well I’ve got to say it’s looking positive for me so far. I have my blue badge, I have my appointment with the ME Specialist and I’m not seeing any ill effects from my CBD. It feels like things are starting to turn a bit of a corner actually. Not physically or cognitively, my health’s fucking awful, but it feels like I’m finally getting some support to try and get better. I’m still aiming to be back at work the end of August, and for me, that will herald the beginning of a new phase – the bit where I get some of my life back. I’m not going to be capable of doing as much, or doing it as well as I did before but I can definitely be useful in some capacity…. and I’m determined I will be. I’m determined I’m going to regain a bit of control, or at least begin to work around what’s going on.
Right now though, I need to rest. I’m exhausted from the build up to this morning and there’s an epic egg salad waiting for me for lunch. I’m going to destroy that fucker and then chill the fuck out until its time to go and get bollockchops.
- You don’t need to be a bastard mind reader for this one – my blue badge has been approved AND the process was really really positive.
- Eli did a piss on the nursery toilet…. as well as two on their floor
- We have bolognaise for tea tonight, it’s the wee mans favourite and if that doesn’t coax his shite out nothing will
- My lunch was pretty epic, I know salad is a bit meh for some people but I eat it all year round and generally always enjoy it
- I found out at my assessment that I can access these off road mobility buggy things at Loch Leven so I’m going to plan a day out there and give them a go when my badge arrives. People will look and laugh but fuck them, I need to be out living again
- Low lights
- Shite strike from junior is making us all a bit antsy. My fascination with shite is becoming more tangible as this parenting malarky progresses
- My whirlygig is still fucked… the spike should arrive today but it’s not guaranteed to fit. Primarily because I can’t remember what it measured at and what I ordered. The life of M.E. is never dull
- I handed my letter into the doctors yesterday. They’re a fairly small practise so I know it’ll have been read by now and half expected someone would call today… but… nothing. So we’ll wait and see what they do with it. If anything.
- This morning fucked me. Not physically really but having to listen for 40 minutes is something I find really hard now – especially when everything being said is so helpful and relevant that really, I wanted to take it all in. Thankfully Christiaan was there and he remembers what was said because I sure as fuck don’t….
- It’s bright sunshine out there and lovely, but I don’t think I can be outside. I need to stay in doors in the shade and try and give my brain a break… I hate giving in on days like this
- What’s on the menu Mellars?
- Breakfast – Raspberries, juicy juicy melon and a yoghurt.. because I’m predictable
- Lunch – Egg salad with feta and a sprinkling of cayenne – a surprise choice really because I was sure we had nothing in
- Dinner – Eli’s favourite – bolognaise, because even though he’s a toddler, I adore that boy
Are you new round here?
If you’ve just stumbled across TryingToDoItAll and have no bastarding idea what’s going on you should probably go back and read a few blogs from the beginning. Don’t panic, I won’t ask you to read them all, but these few posts will help explain. Oh stop sighing, it’ll only take you a few minutes. Fucks sake.
- Well you’re here, so you may as well get comfy
- Can’t stop M.E. now…. ahmm having such a good time, ahmm tickling your balllssss!
- When are the grown ups coming?
- Major surgery…again?
- You’ve got to be kidding M.E.?
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ME Blogger extraordinaire… a bit of a shit one, granted.