Following on from a question that the PIP (Personal Independence Payments, which is a UK government benefit) assessor asked me the other day about did I have any hobbies and interests. My first thought was “yes, loads!” but you see he also asked me if I enjoy them regularly……yeah, there lies the stumbling block for me and countless others with PDA I’m sure. Yes I do have a lot of hobbies and interests but I’m not able to enjoy them on a regular basis like other people can. So, with this in mind, my answer to him was a simple and rather depressing “no”. Mostly my days are filled with scrolling through Facebook/admin, iPad games involving candy and watching huge amounts of television. Not groundbreaking stuff either – Diagnosis Murder, Judge Judy, Neighbours and Game Shows feature heavily! You see I’m always in either preparation or recovery mode and for that I need to watch television. It’s not just about whiling away the hours without having to use my brain – it’s also about being surrounded by the familiar, where the unknown isn’t a thing. My other hobbies, like crafting, involve too much stimulus for preparation and recovery. They excite me too much. I need to be in a low stimulus environment to properly go through those processes. I’d not connected those dots until I started this blog so I’m in the midst of my own mini lightbulb moment! I love it when that happens! Yes I’d always known what I needed and that crafting wasn’t something that I could enjoy all the time but I’d always put that down solely to demand avoidance because I love crafting so much. Yes that is part of it but I also think I’ve stumbled onto something quite interesting. Think of my preparation and recovery times as very extended time-outs or naps (without the sleeping element). You can’t “nap” if the world around you is too busy and exciting – you have to remove the excitement before you can “nap”. It’s really quite simple when put like this. So this is partly why I cannot craft as often as I like, which let’s face it would be all day every day! Not being able to craft very often doesn’t stop me having a lovely little room set up just for that purpose and nor does it stop me buying new things to use or my brain filling up with idea after idea. It actually gets to the point where I have to put other things on hold that normally take up my energy and time and then force myself into the craft room! I know! Sounds crazy when you consider how much I enjoy it! I’m getting to that forcing myself place again. It’s been a good couple of months since I was in there and the ideas and new stuff is piling up! Once I’m in there I’m okay and then it’s hard to get me out! I have to pick the time wisely though so as to make sure it’s not when something big is coming up because I literally have to stop everything else to craft. No Facebook/admin, no socialising and no commitments outside of the home. So you see I couldn’t craft every day from a practical aspect too. No one can live their life closed off completely, even though we might want to at times! Crafting seems to need all of my attention or absolutely none at all. There seems to be no middle ground at all. I’ve tried over the years to find a balance but it just doesn’t work. Maybe one day!
The photos are just some of my recent purchases, including my new hobby of crocheting which I’ve never even done before!
So Paul and I are going to go into the hole that is the craft room to tidy and clean tomorrow! You see that’s the other snag – it’s such a mess! I’m such a messy crafter and I don’t tidy as I go or even at the end of each day – I just let it pile up and up until I actually can’t craft in there anymore! My crafty friends will recoil at that! I struggle with demand avoidance to keep it tidy and then demand avoidance to tidy when it gets out of hand but if I’m to get all these ideas out of my head and turned into something tangible then I have no choice! Paul can’t do it for me because in fairness he wouldn’t know where anything goes and then I wouldn’t be able to find anything. The struggle is real!
So……watch this space! Will I make it into the craft room tomorrow to tidy? Will I craft anything? Or will I just have yet another sofa day? Let’s not forget that even just thinking “I must” or “I want to” makes something a demand￼, let alone writing a blog about it! Fingers and toes crossed please!
Families! Can’t pick and choose them……..fuck it! I’m tired of this rift now. It’s stupid and pointless.
Right, let’s start at the beginning. Back in April my mum was in hospital. I tried on more than one occasion to go and see her but couldn’t do it. I really did try. I have a phobia of hospitals and germs you see and I mean a big phobia. For example when Paul had his colonoscopy last year I sat outside in the snow waiting for him rather than inside the hospital! I love my mum dearly and wished I could see her but I just couldn’t do it. I explained this to my brother but was met with sarcasm and nasty comments instead of understanding. He really lashed out at me, telling me to “suck it up” and that he’d “swap his kids’ problems for mine any day”. Rather than reacting badly I decided to put some distance between him and me by saying that “at this moment in time I didn’t want to speak to him again”……roll on 9 months and he’s still adamant that I said that I “never want to speak to him again”! Beam me up! I have the fucking messages so I know what I wrote! Isn’t it crazy how even the written word can be twisted to suit….￼I never said that I didn’t want to speak to him again! I just said that at this moment I didn’t want to. That was true. I wasn’t prepared to be spoken to like I was a piece of shit on the bottom of his shoe. I don’t think I did anything wrong in that moment. Anyway as the months went on I was drip fed a list of “wrongs” – things like how I’ve chosen my cats over my nieces for example! Ridiculous! What I actually said was that one of my elderly cats is absolutely terrified of children so rather than the kids coming here we would meet halfway. Again what is wrong with that?! Last time they visited he went missing for 6 hours! I’ve been told off for numerous other petty things that I can’t even bring myself to list. Then in the summer they had a family party and guess who wasn’t invited and in fact didn’t know anything about it until I saw the photos on Facebook?! Yeah that would be me! That really hurt!￼ I felt so excluded. That was a deliberate and spiteful act. Everyone else was there apart from me and Paul. Family keep telling me that I should apologise to him and “make amends” but I won’t. Why should I? What exactly have I to apologise for? For being autistic? For having phobias? For existing? I was more than willing to talk things through IF an apology came my way but I’m more likely to get blood from a stone than get that from him. It makes me sad that he’s willing to forgo any type of relationship with me just because he refuses to understand me. It’s like he thinks all of the troubles I have are a choice or something. Like I can just stop having PDA one day, all I need to do is decide that and it will happen. He lacks all empathy too for anyone outside his immediate circle. Yes life has dealt them some very shitty cards, and continues to do so, but that’s no reason to treat me this way. Telling someone with autism to suck it up isn’t okay and effectively wishing autism on your children is just nasty. Oh I nearly forgot I’m also in the wrong for never sending them messages and for always passing on love via my mum (who lives with them). We’ve never been a very “keep in contact family”. We don’t live in each other’s pockets. Up until recently, as it turns out, this was okay. Shame my brother didn’t tell me nicely that he’d like to hear from me more often. I’m not a fucking psychic! Out of interest, I looked to see the date of the last message from him and yep you’ve guessed it – 1 fucking year before, on my birthday! What a hypocrite!!! If you love someone and want to hear from them more then what’s stopping you from picking up a phone or sending a message yourself!??!!!￼￼ How was I meant to know that he wanted this!
So what was all this ranting meant to achieve……nothing really. I just wanted to use my safe space to say all that’s been pissing me off for so long. Tonight, following a few bits of bad news today, I’ve decided that I’m not going to waste anymore time on waiting for the mythical apology. It makes me very sad to say this but I’m going to close the door on this chapter. I have to. It’s not healthy to hang onto all this negativity. I’m going to post this, close the iPad and sleep. Busy day tomorrow with an “at home” PIP (re)assessment. Dreading that but could be worse. I’m not going to change or apologise for being me. I deserve to be loved and accepted by my family just the way I am. My brother has personality traits that I don’t particularly like but I wouldn’t make him change. That’s what makes him, him. I’m me and I’m okay with that. If he wants to apologise and talk things through then he knows where I am. I shall keep fighting the good fight. #PDA
Love to you all 💜￼ (and sorry for swearing so much)