Things You Take For Granted…

There are many things in this life that we all take for granted and are not in the slightest bit grateful that we have the ability to actually do them and do them without even thinking about it.

Little things like brushing your own hair and brushing your own teeth are so underrated… until you cannot do them by yourself. I cannot brush my own hair. My carer is awesome, but has so much to cope with that little things like my hair get forgotten about. Then I end up feeling guilty that I have to ask. Then half an hour later I have to ask again as it has been forgotten and so on and so on. I end up in floods of tears as I feel like I’m nagging for something that is so simple that is so simple, I should be able to do this for myself. Yet I can’t. I try to lift my arms up to get my hands to my head and my shoulders crack and searing agony shoots across the top of my body. My shoulders will not move more than an inch before they crack and pop, and if I’m not careful, they will dislocate. That, my dear readers hurts like a bee-otch I can tell you. I can’t brush my own freakin’ hair and I hate myself for it. I feel so freakin’ useless because of it. I really miss just being able to lift up the brush, style and go.

Brushing my teeth. That, like most of the hygiene related tasks that I can relate to is so difficult. On the good days when I can stand at the sink, I have an electric toothbrush, but when I can’t make it? I have to use listerine strips.

All of these little things. Hygiene, dressing, getting to the loo and even pampering yourself. Little things that you take for granted when you are “healthy”. You simply do not realise just how much you miss them until you can not do them, and the effect that this can have upon you as a person can be quite devastating, it really can.

I miss ironing. Yes, I know that you will all recoil in horror, but I genuinely did love ironing. I would put on some classical music and happily stand there till it was all ironed. Socks, underwear, towels, the lot. Even something as mundane as housework. Even things you hate (for me that was hoovering) but ironically I even miss that.

I guess that my point here is that you do not realise just how valuable little mundane aspects of your life truly are. Things that you would do without even thinking about it. Spreading your own butter on a piece of toast. Opening a can of fizzy juice. Those are the kinds of things that you do not miss until they are no longer a part of your everyday life.

I’m slowly learning how to cope with this aspect of my illness, and every day that passes, I become a little more adept at coming to terms with what I no longer have the ability to do due to my illness. I’ll never be completely over it but in life, we must learn to adapt when our circumstances change and we cannot prevent it.

I guess that what I am trying to say is this. Never, ever be upset or ungrateful about little things. Be glad, be happy that you can pick up that iron or push that hoover. Be glad you can make your own cup of tea or coffee. Be glad you can stand in the shower and not have to sit on a chair and have someone wash you while you are there.

Give thanks every day for the small stuff. Never ever lose that, and always love your life.

Well, I guess that is all for this time so I’ll finish here.

Be kind to each other.x


I miss you mum…

A very brief post. Mum, you are still the light in my life even though I have to struggle every day since I lost you thirty long years ago. I love and miss you so much. Happy birthday mum.xxxxxx

I see through you, you son of a bitch…

So tonight my man shape gets a call. A telephone call from out of the blue. His darling mother (who sees me as the nasty little pagan with tattoos and piercings.) played a nasty trick tonight.

She called MY number (not his) which indicates that she wants me to know and wants to cause me maximum distress.

She makes some small talk about his brother who has had a biopsy taken of a nasal growth. Then moved to “Guess what? Your estranged son who hasn’t even sent you a fucking birthday card in ten years. No birthday, no Father’s Day, no Christmas. No fuck all!!!

They are estranged through thr fault of his ex-wife. She has kept them poisoned for all this time. So granny dearest has to stick her snout in and cause all this stress.

My kid aren’t his blood, but they give him gifts and cards every Yule, birthday, Father’s Day any other day!!!

Now it looks like they are going to be swept aside. Well fuck that.

Changing plans and meltdowns…

Well, it’s not strictly a change of plans. Both my boys were told that they had a dentist’s appointment. Nothing major, only a check up. Now I think both kids have heard and understood as they dragged their eyes away from the screen and both nodded and said “Yes mum”.

My mistake was not to remind senior before he went to school. I knew that junior would be OK. He put a reminder in his phone. Senior doesn’t have a phone. They freak him out and he can’t cope with them and he disolves into a puddle of mush if he has to talk on the phone. (Much like myself really.)

So, they got home at 4pm and senior got into his PJs, which is his standard routine after school. If he has to deviate from that, we have all kinds of hell in the shape of a meltdown which just got worse when he is reminded that he has to go.

The only way to calm him down is to wrap him in his blankie and let him come round. So far it’s looking like he will go screaming and crying.

The other incident that upset him was that he wanted proper chicken curry from a takeaway. I told him calmly that we were having Shepherd’s Pie (savoury soy (or real beef)mince) with mashed potato and cheese. Normally he loves this meal, but not today. He screamed even louder.

The neighbours must think that I  butchering the poor kid from the way he is screaming. I have an ear infection brewing which is extremely painful, so the screams are making it worse.

The moral of the story? Always double check and triple check with your autistic children when you have differing plans from their normal routine.

Having “that” conversation with your child…

The birds and the bees. There comes a time when you realise that you have to do the “talk”. You notice that you have a child with a serious girlfriend. They are both almost 16 and seem very serious about each other.

So you sit your child down and as you start to try and approach the subject, he announces to you that yes they have and yes they used protection.

I was fighting two emotions. Pride because his was clever enough to use protection and nausea because I really didn’t want to think about him having sex. Not one bit. It was one of those moments where you stick your fingers in your ears and sing Lalalalalala!

However, this brings me on to the important part of the talk. I told him he must never have sex without protection as I am NOT ready to be a granny yet, no siree, I am not! I’ve purchased a box of condoms for him and I’ve told him when he needs more to ask me. I’ve also told him never do it outside. The thought of them up some disgusting urine soaked back alley full of broken glass and used needles makes me recoil in horror it really does.

So I’ve told him that if they’re going to do it, then they either go to her house or they come here.

I’ve also given him the boring part of the speach about the legal age of consent. I realise by purchasing condoms and giving them a place to go is encouraging them to break the law, but if one takes the attitude that they are going to do it anyway, I am just doing my best to help them.

The funniest part of the conversation was the dawning horror in his eyes when he realised that his aged, crippled mother got upto everything that he had just been telling me about! 😂

Is being angry really worth it?…

Seriously, I’m wondering if it is. Why I hear you cry? Well, my 15 year old has come home from school with one of the worst temper meltdowns I have ever seen him have. For a neurodiverse child with autism, ADHD and pathological demand avoidance, believe me when I tell you he has had some really bad stinkers of a meltdown. But this one? It was visceral!

Normally Im quite able to not rise to this and just put him in a quiet space until he calms down. But today? I have the flu. I feel like hell. My temperature is 38.9 and I’m alternately shaking and sweating like crazy. So when Captain Gobshite came through the door in this ball of fiery anger, I just couldn’t cope.

Within five minutes, I had royally lost it and was screaming like a possessed banshee at him. He had started yelling and blaming me for losing a form he could not find that he needed for school. No way was I taking the flack for that. He is not using his autism as an excuse for laziness. The form should have been back in his bag after he showed us.

He was being so rude and confrontational and he knew he was pushing all the right buttons. Yet most of the time I don’t react. I wonder if my being ill has lowered my guard on my emotions.

I screeched and yelled back at him until the damn thing was found and then I burst into tears and had to take a Valium.

As my temper levels returned to normal, I began to wonder if there was a point at all to anger. All it does is break you down and destroy you heart and soul. It leaves you feeling sick and broken inside. Is that short flare of temper really worth it? Is the two minutes of tension relief it brings to you really worth the destroyed voice and love that it brings? Here’s the rub… I don’t know, I really don’t. But if I had to, I’d choose that it is horrible and simply isn’t worth it.

I guess the point of this post is a little self centred. But I just want to us to remember that anger is toxic, and if you can at least keep that going, the thought will slowly help us remember to be calm in those situations.

Have I made sense here? I’m waffling on as a result of my temperature. Bleurgh. Pass me the sick bags.

Wrung out…

Dispair is creeping up inside my chest and curling it’s fetid fingers around my throat. I’m fighting the urge to cry, but the needles of tears are pricking the back of my eyelids like a thousand needle sharp teeth.

I try so hard to be a good person and a good mother. My kids are my absolute world. But they are both autistic and have special needs. I do everything by myself. But my youngest has just snapped at me. Violently snapped. I had a flashback to being beaten by his father. It was horrific. I’m now feeling cold, hot and terror filled. He is downstairs and ignoring me. He has retreated into his autistic shell. A part of me is so envious. I would give anything not to feel right now.

My thoughts are so dark right now. Why does everything I touch turn to shit? Why am I such a failure? Why can’t I have friends? I’m so toxic that every single person that I meet ends up melting away from me like butter.

I’ve fought so hard for so long that I have nothing left. I’m wrung out…

Difficult few days…

The last few days have been both physically and emotionally difficult. As much as I have my boys, and I would crawl over broken glass to give them what they need to be happy, I have to fight many demons to be able to do it.

My mum died 26 years ago. I was 16 years old. The pain has never gone away, but it has become easier to bear. There are three times when I really have to fight not to cry though. They are her birthday, christmas and when I am ill. So this christmas there have been two out of three. There have been a couple of nights where I have fought to hold it together in front of the boys, then once they are asleep, let rip with quiet tears. I miss her so much.

My pain has been at almost uncontrollable levels. Moving even short distances has been so damned difficult. My knee popped out but thankfully went back in on its own. No way I’m going to A&E on christmas eve! All I wanted was a cuddle from my mum.

Yet I did it. I gave my boys a wonderful day. They understand why I can’t wrap presents neatly. They don’t care. Their gifts are shredded so quickly, I don’t think it really matters! My friend came and cooked Christmas lunch (I can’t use the oven) and ate with us. It was wonderful.

Sure, I didn’t have butt loads of presents. We didn’t go out anywhere. But what I have is the image of my boy’s smiles imprinted in my heart. That is the best gift of all!

Flare up central…

I have not been feeling particularly well for the week or so. Both my EDS and my fibro have been kicking the crap out of me.

Four nights ago, I rolled over in bed and my shoulder popped out. Oh boy wasn’t that fun. It got popped back in, but it’s still painful. I’m eating handfuls of pills like smarties. 😭

I cannot remember the last time that I wasn’t in pain. I cannot remember the last time that I wasn’t exhausted. I can’t remember the last time I felt like a human being.

But I tell you one thing. Disability or not, my kids WILL have a totally fucking awesome christmas.