It’s sounding serious. I mention trials and tribulations twice below!

When one enters the winter season the warming thoughts of Ugg boots, hot chocolate and the log burner glow are very exciting to people such as myself who love the time of year. What’s better than a freezing cold day when you can wrap up warm but still get to wear sunglasses for the winter sun, bliss. The PJ’s are on mostly by late afternoon and there is always watching tv snuggled with a blanket.

Scrap that.

This year it is decided that we shall get a pony and instead embrace the dark evenings out in the freezing (and wet ) temperatures. There will be mud and hay mostly everywhere and practical clothing becomes an everyday event.

Even though I shall absolutely at no point be mounting a horse I am gratefully and purely there in support form. I love horses but I am definitely ground staff material rather than the flying team. So by some unexpected and rather sudden turn of events I have transitioned into equestrian life. I feel I am now a horse mum but am befuddled by the term as I am a mum of a teen who has a pony but that’s very longwinded. So I’m sticking with horse mum as I love him already even if he can sometimes be difficult to love!
This title may not be an obvious one for one with a brain injury but carer no 1 appears to think we can do this. All the best grandmas get promoted to Horse Grandma!

With the new role brings the trials and tribulations of watching your most loved one , love and detest the past time, sometimes simultaneously. It is as frustrating as it is exciting and there are regular switches back and forth between proud parent of the year and recognising that no effort has been exerted whatsoever; and that is just the riding part. The balance power of navigating a hay barn, the vision issues of the low (and zero light) ,the trip hazards of a yard in addition to avoiding the rather aggressive looking geese, are all now regular activities; meanwhile still looking very normal to the general population. My daughter has stated that I scream ‘all the gear and no idea’ so this may be a good disguise for the time being.

The brain injury part of this is a new one for us. I rarely venture off track, rarely navigate walking in the dark and certainly don’t partake in standing around in hazardous weather but that appears to all be changing. I’m pretty positive this is going to flag up some interesting observations so I’ll take notes and we can discover how a brain injury manages very large animals and a busier more active outdoor lifestyle whilst exposing the inevitable ups and the downs, the positives and the negatives and the trials and tribulations; and of course there will be cute pictures of the pony x

The buzz word of the moment! It is getting a tad overused these days which can sometimes take off some of the shine. Some would say a first world complication?!

So very briefly, as people do degrees on the topic, why am I flagging it up today?

If one exists in the neurodivergent world ( that’s 15-20% of us in the UK) the best gift you can give yourself ; or someone who needs it, is getting acquainted with this term and then do your damndest to manage it. It’s a force that can paralyse function and it’s very rarely proportional. Those who endure with it can themselves be dismissive of it in others. If we recognise it though we can be in charge of it. It is more attainable than we think.

So today the overwhelm monster (they are scary, have a very negative aura alongside a pressuring attitude) came and sat with me while scrolling on Instagram looking at Christmas decoration posts. It’s been a busy day! Grand staircases adorned with several trees and a lot of hot chocolate shots. Obviously I got straight onto Pinterest plus other favoured sites and tried to find a door wreath that was actually still in stock. It then spiralled into Christmas pj’s, a Christmas cushion, I need to wash the champagne glasses, I don’t actually like any of my old decorations so clearly need a redesign and the list went on and on! Heaven knows if I’m actually going to have any success in finding a Yule log in stock! It is actually ridiculous and I absolutely knew it but I was partaking in the madness. Hook line and sinker I was on the Christmas thought train. So what did I do?! I actually had to take the babyface to piano so I reluctantly dragged myself out from the warmth of the log burner, left the cats to it and in an instant I was in a queue in maldon around a popular supermarket which is probably busier than usual as others probably too at the onslaught of the Christmas adverts felt compelled to run out and stock up on stuffing mix , chocolate and baileys (which we will all clearly eat before the big day anyway!) so note to self, don’t get overwhelmed. I purposely have too stop it in its tracks. It’s time too employ those coping strategies with avengeance. A list can actually be the best friend you never thought you had, time out will be more powerful than you think, distraction may be the name of the game or just put a Christmas movie on, grab a hot chocolate and enjoy yourself. It seems so obvious when you think about it and write it down so maybe that’s my therapy.?

All pretty ordinary stuff I’ve said above. It’s quite black and white when written down and likely applies too so many people. It’s actually quite comforting that it’s quite standard. I can’t blame an acquired brain injury on becoming overwhelmed. It’s absolutely probably not helping but it’s recognised and with recognition comes the ability to conquer. Christmas that is, not the world!

Do a reset and embrace the magic ✨

Hi, Hello (or even Hola which is a favourite greeting of mine) 

I’m back!

Bit of a surprise to me too as I had completely lost my blogging mojo. In fact it full circled turned into a nojo. I’m not completely sure how, why or when this happened but I lost the enthusiasm and passion to share experiences in a positive and interesting light and got very stuck in the mindset of same old same old. (Potentially the subject of a future blog post hmm)

Alongside this I definitely did not preempt its return (albeit likely to be a bit of a slow burner !)  but we shall see..

Over the past few years ( I’m still present, no improvements to report unfortunately, I have a teenager and I’ve hurdled into my 40’s ) I’ve looked to positive proactive influencers with invisible disabilities and similar souls on social media. These have been a motivating tool to not only learn new things but also just to be reassured. On the flip side the woe is me brigade and the promotion of living with a disability is regularly bothersome. It’s not fun and it’s not a superpower and so I feel a bit of my middle ground levelling attitude is a very welcome addition back into the fold (if I do say so myself!) 

The current mood is generally pretty meh with an objective and subjective observation that this does need addressing (Peri menopause assumptions aside please! ) 

And on that cliffhanger I can’t not offer a follow up…

It’s been a bit of a week and to set the scene the most trivial event was being mistaken as a horse (which is always disappointing!)  by a horsefly and therefore being bitten which was very painful; this, therefore proving that the law of attraction obviously does work because if I am going to insist on being grumpy these things will inevitably happen 🙄

To be very honest I am feeling really rather lost at the moment. Not completely lost but I am just very bored of discovering on a daily basis more obstacles to living with a brain injury. I think I must have hit a wall whereby reality hits and things aren’t going to improve; so you have to accept that life’s going to be hard for a blooming long time. Most days something happens that makes me feel I am being constantly stopped in my tracks and dragged down by my acquired disability and just sometimes maybe we do give up a bit and it does get too difficult. That maybe does sound slightly dramatic in that we don’t just take to our beds and roll over and die (think that probably warrants a do not try this at home warning!) but that we get up, we do what we need to do and that’s all we can do. We don’t have anything left for anything further. I don’t know whether thats frustrating or whether or not I can actually be bothered to be frustrated about it anymore as I obviously will always keep going because I have too so frustration is probably just a waste of time. I would like someone to wave a magic wand and make it all better but that’s probably unlikely to happen ( note the probably, I still have my optimism!). 

A very wise friend told me that I can do anything but I can’t do everything. I just need to find my anything?!

https://m.facebook.com/Tryingtobetamsyn/

Well…

To be completely honest. I don’t know how I got out of bed this morning. My nausea is a shocker today. Sometimes there were tears at one point. It all feels totally overwhelming. I am struggling. I feel really unsafe in this environment. I am finding it quite difficult to concentrate on talking and remaining upright at the same time. Am experiencing hearing issues. My shunt is playing up horribly. It is unsettling being in loud environments or wide open spaces. Bright lights are uncomfortable. Continence issues. Obstacles on the floor are a constant danger so I find it difficult to manoeuvre around new places when I don’t know the layout.

But what generally comes out…

I’m good thank you, how are you? 

It’s a tricky one! Should we be honest and say how we feel? There are so many arguments for yes and for no. I’m intrigued to hear what you guys think?

Ps I think I’m in the no camp. To be completely honest (and potentially slightly pessimistic) things could always get a lot worse so why let’s not save our thunder for that day.

So tonight and a few times this week I have been asked if I am watching the new series about the workings of the NHS. I of course use this term in its loosest possible sense.

It aroused a simmering frustration  I obviously harbour with my NHS experience. This is not the anger associated with catastrophic treatment and management of my condition which is far too long winded to get into but just the general NHS day to day experience; the everyday management of a chronic condition. 

The only way this can be described is exactly like our national lottery system. Generally your not likely to win, you accept your loses and take it on the chin. This is just a normal state of affairs for us. We don’t expect to win. Sometimes you might win £10, quite rare but not unheard of. A nice experience, leaves us feeling satisfied and more importantly keeps us paying into the system. Then once in a lifetime you might hit the jackpot. You find that gold standard of treatment and you are on top of the world. Unfortunately though just like a lottery win it’s not infinite so one still has to keep buying a ticket and so it continues.

This is the reply to a friend who asked tonight if I had watched the programme

“I don’t want to watch it. People keep telling me about it and I just get really frustrated as I have had these experiences i.e. Bed management etc and I sometimes just feel like no one has listened to me 🙈 sorry rant over, it’s a very raw thing “.

I really can say I have experienced the NHS at its very best and it was brilliant, I have experienced it when it was just about acceptable and have suffered when it’s been at its very worst unfortunately on more than one occasion; and the only conclusion I make is that every time you step in there it’s a lottery. But as they say, “you have got to be in it to win it!”

I think I can safely say I can pretty much be useless at coping. I do absolutely cope with the big stuff, it’s the little stuff that can and does make life just that little bit more tricky.

Take just a normal day. I have a hospital appointment to attend and a lovely supper with friends to look forward too. How lovely. However due to lack of organisational skills I have left some homework from a course I am doing to the last minute, I had completely forgotten we had to bring along a sharing plate the next day, the things I had planned are having to be moved around and the last incident nearly toppled me over the edge. That horrible mental whirl and lack of ability not to panic is not a good start to today (and it’s only 9am). I’ve still got to get dressed etc and am becoming less motivated by the minute.

These problems are trivial everyday things that have simple solutions ( when one is calm and takes a step back ) but it’s the juggling and planning that’s doesn’t come easy to us. The ability to remain calm and take a step back is such a physical and emotional action so can often be a hard step to make. The heaviness of mental flooding literally does make my head feel heavy.
Even more frustratingly I could normally emotionally eat my way through the frustrations but am cutting back so that’s not been a great help 🙉🙈.
Ps word of the day is quite obviously ‘frustration’ today.

I am obviously subconsciously incredibly vain. I love my clothes, bags and make up and try not to look too shabby on a daily basis ; so being told I had to have a walking frame did not go down overly well.
I have a brain injury and am at huge risk from falls which could and is quite likely too cause further damage. So obviously, taking this into account it’s a no brainer (that pun was not intended but did make me chuckle), I need to use a frame.
However, using a frame I would look disabled. People would look at me differently.
The reality is that firstly people stop me constantly as my walker is very cool and people love the concept of a mobility aid that is stylish yet practical; or people come across very perplexed as they can’t really understand why a wannabe trendy 34 year old would be using a walking frame. I can almost see them trying to work out what is wrong with me. However the moral to this story is that in reality no one is particularly bothered about whether I have a frame or not and that actually I am now safe when out and about, I can do so much more and frankly needed a little bit of getting over myself.

In a nutshell, feeling safe is a game changer. 
In reality, the people we worry are judging us are probably only worrying about something they are self conscious about so really we should just do less worrying.

Waiting in the waiting room of St Mary’s hospital I spotted this girl and immediately was drawn to her. She was a similar age and was also with her mum. I weirdly had a sense that we had a lot in common but it didn’t even cross my mind to say hello. As we do we carried on with our wait (obviously a long one as is compulsory in the nhs!) and didn’t give it another thought.
Someone had a plan for us though and we both ended up sitting next to each other for bloods in yet another clinic wait.
I couldn’t hold it in and started up a conversation. I felt like I was watching a mirror image of myself answering back. This requires a little more explanation but when you have a brain injury everything requires so much concentration and so any added scenarios can often deplete those supplies further. A classic example is that Carer number one will chat to anyone and everyone. I on the other hand need to be selective for self preservation reasons and so often avoid situations like this which often looks rude but it really is not.

This is what hit me with This girl. I immediately saw a hesitation, a little bit of panic, a little bit of I’m not really up for chatting and a little bit of I would really like to chat. Oddly enough there isn’t one word that can sum up that emotion and even worse it is even harder to deal with as it takes a little while to compute. 
It felt brilliant to see this as I felt I saw how I feel in a third person. 
After an evidently shaky start (well from my side definetly) we had an amazing chat and have been keeping in touch.