4

These things take forever

I can sense Autumn in the air, I can smell it. We had a glorious Summer, which served as a battery charger for me but also gave my anxious brain opportunity to worry about the damage we are doing to our beautiful earth. Too much heat, not enough water, it’s time to drop those selfish habits folks.

The last time I left the house and went further than the end of the drive was the 6th July. I dipped outside briefly in this time, not often, to check on my veggies and catch some sun but every single step drained me. I’ve been in bed for over a month, the longest most testing time I’ve had for years. I always knew my recovery would peak and trough but I thought at least that those long dark days of despair were much reduced. How wrong I was, it’s like my brain knows when I’m too comfortable and decides to remind me just how out of control I am. Maybe it’s a pattern that will repeat until I JUST BLOODY LEARN to stop dropping into old habits, or maybe, more realistically it’s the nature of living with a brain injury. Funny that I can STILL forget that sometimes.

So the past month has been spent in partial darkness, listening to paranormal podcasts, staring at the ceiling and crying. I was at points, at the very edge of my mind, hopeless, frustrated, scared, in that liminal space between living and ceasing to exist. I’m slowly surfacing once more, there’s a gentle coming together of mind and spirit that is one of the most hope-filled feelings I’ll ever experience. I thought that was it this time, I wasn’t coming back, so when you do the relief is palpable.

What can be done at these times? To be frank, not much. I accept what is happening and let it do it’s thing. I know it eventually passes. Aside from that I rest, I rest like a sloth taking some time off. This is all that helps, I am too fatigued to move so anyone who tells me I need to have  a short walk to energise myself is told in no uncertain terms to eff off. It’s more than enough for me to make sure I’m not peeing myself. I’ll say this louder for those at the back HAVING FATIGUE AFTER A BRAIN INJURY IS NOT THE SAME AS BEING TIRED. Oh to only be tired!

Now, taking time out from the world to fully rest is not ideal in some aspects, it’s a long time out of action, things go undone, life gets unlived and you become dissociated from everything. I didn’t know what day it was and when I looked in the mirror, it took me a while to realise that it was me looking back. Due to the insular nature of this aspect of recovery, I also don’t reach out to people. A time when I need it more than ever. There’s a few reasons for this, one being that I’m just too knackered to interact but also there’s the fact that there’s nothing anyone can do so I don’t want to bring anyone down with me. I realise these are just excuses I tell myself to avoid being vulnerable and believe me, at these times, I am massively vulnerable.

I ended up emailing The Samaritans, it was a strange experience. Useful but also somewhat robotic. It helped me through the hump but also made me think about how despite writing this blog and attending psychology I’ve still never shown the guts of all this. I’ve never fully raged about how devastating this TBI has been. Showing such depth of emotion can make people uncomfortable, they don’t know what to say or do and can often say things that make you feel invalidated so you end up not bothering.

I think next time I’m alone in the house I’m going to scream my lungs out. I’m going to shout every single swear word I know and expel that energy that is swimming around in my tummy and chest. The thing I have noticed about this layer being removed though is that my passion for music is back. I am more focused and determined to play guitar and sing again. More so than I’ve ever felt. Maybe it was just waiting in hibernation ready to be catapulted outwards.

Listen to: First Day of my life – Bright Eyes

 

 

 

 

 

0

Leave it to me

Our Winter this year was a long, cold and depressing one. It never seemed to end and kept dipping back down into misery after it had fooled us with a day or two of warmer temperatures. Then Summer arrived with a big glittery explosion about 4 weeks ago. It’s been hot, bright and energising. Now I can point out the parallels between the weather and brain injury recovery but that’s too obvious right?

Whilst enjoying this beautiful, bountiful display of solar power there have been significant changes occurring in my life. As you know we moved house a month ago. We are settled now but it was a huge upheaval. Then this Thursday just past, I had my last college class for the Horticulture course I am about to finish in 9 days when I do my exams (actually I need to be revising now but I’m procrastinating and writing this instead).

I’m currrently experimenting with a new routine that occurred after a day I had of feeling incredibly angry and despondent about everything. I was snot-crying and shouting at myself, just so sick and tired of the ‘stuck-ness’ – the big pause that occurs with a traumatic event or chronic condition. So I gave myself a huge kick up the arse and told myself that if I want to see change, I have to make it. Hard when your reserves of energy don’t allow for massive leaps but my small steps are fine enough for me.

I suppose I wanted to write this post to convey the vulnerability that I feel, that we all feel when life has come to a point where it’s offering up another one of those pesky crossroads. Neuro typical me would barrel through like a tank, just following my gut and taking no prisoners. Wonky brain me overthinks, gets scared and second guesses what I need to do. Whilst I was studying at college I had something to focus on, a purpose and I suppose to some extent something to hide in, a place where no decisions had to be made. Now I keeep getting asked what I’m going to do ‘next’ now my course has finished and to be honest – I have absolutely no idea.

That though, is not the answer people want.

So I get sent into a tailspin thinking I have to have all the answers and that there has to be something to go onto. All those old feelings of failure and panic because I haven’t put anything in place for ‘next’ and ‘next after that’ and ‘even more next after that next’. Then I pull my head out from my bum and remember that all that kind of nonsense got confined to the bin after my TBI. That striving and rushing and forcing outcomes. A place where a lot of people are still stuck because it’s hard to conceive anything outside of the lifestyle we are drip fed on a daily basis.

I may have mentioned this before but I can’t remember, it’s a Shamanistic belief that people who endure huge trauma are born again into magic. I like that. I like the idea of magic growing after massive loss.

Surviving a trauma can certainly give you a new perspective on life, I find a lot of the time that the things people do and say baffles me. I can’t understand why they are fighting themselves daily. There’s also definitely a huge part of society that I just don’t take very seriously anymore. This is incredibly freeing but also makes you feel like an alien. Especially when everyone can seem so angry about nothing.

I’m at a stage now where whatever is next for me is whatever comes along and gets my attention, I have to not go back into that urge to solve and control. It feels a bit like limbo and that can feel scary, maybe it’s time to fall into that fear.

Track: Guaranteed – Eddie Vedder

2

“They say I got brains but they ain’t doing me no good”

I’ve not really been in a time or headspace to write any posts recently. Lack of inspiration, lack of energy and a tsunami of ‘life events’ have prevented me doing anything else.

Firstly it’s May and someone needs to tell the sun that. We are having small breakthroughs of nice weather punctuated massively by grey, drizzly, cold and miserable shite. This does not help my mood or my energy. At all.

Then there’s been family stuff, exam stuff, legal stuff and the biggest humdinger of them all was 2 months ago when our landlady told us with regret that she is selling the house we rented. As we all know with the ‘law of the way things are’ stuff happens in life ALL AT ONCE. Pre injury me would don my uniform and fire fight with the best of them, with a POW and a CRASH I’d see off all enemies and then go and have lunch. Post injury me and my brain just says “aw dude, this IS NOT what I’m down with anymore, I’m just going to go and nap”. My reserves deplete very quickly and I’m zombie braingirl shuffling through peril whilst looking for a hiding spot.

As you can imagine when we were told that the house was going on the market, I just crumpled, literally and figuratively. I sank to the floor and cried my little heart out. It brought out all my feelings of vulnerability, of feeling unsafe and at the mercy of the world. I was losing a magical place where I could heal and feel safe, a place that held me when I couldn’t hold myself and where me and Mr Braingirl loved enough to get married in the garden. I needed time to process and adjust, change is not an instant thing for me now, I have to wait for my brain and my energy levels to catch up. It took me about a week of feeling melancholy and paper thin before I could activate myself and then we had to solve the problem of finding somewhere new to live.

Whilst this was going on all the other stuff began to pile up too. Things that required instant action and an abundance of energy. Hahhaha yeah right. I tried to chunk thing up into steps like I was told but when everything needs your attention all at once it’s kind of difficult. So I did the only thing I could do, grit my teeth, rest whenever I could and get on with it. I was also heard muttering to myself on a regular basis “this too shall pass” this was the only way I could stem the overwhelm of everything in front of me.

So you find me here, in my new house after 2 months of packing and stressing and being sad. A new house that is in a lovely place with mountains and forests and a garden I can work in right outside the door. So moral of the story is even the tough stuff can sometimes be for the best. I tested my mettle in a big way and found some of that old fighting spirit I used to have in bundles. Don’t get me wrong. I’m exhausted and not sleeping very well due to not being relaxed and having my brain whizzing. It may take me a good while to get back on my feet again and there’s still stuff to sort out and things I have to do but I got a big shock and upheaval and I’m still here, breathing. My hair is messy and I’m a bit smelly but I’m here.

Suggested track: I jut wasn’t made for these times – The Beach Boys

3

Where do I go next?

Hello fellow headbangers and non headbangers.

It’s been a while huh? Or at least it feels that way as Winter often does. Slowly crawling through the cold dark nights until the faster warmer energy of Spring hits. February often brings a great feeling of hope for me as I feel new life begin to stir and start to think about my new season of seed sowing. My energy levels definitely match the season, I‘ve been half asleep for most of Winter, wanting to hibernate and sleep, a feeling we all get I’m sure.

Despite the urge to curl up I’ve been active when needed, I aged another year in January (I’ve started counting backwards now!) and just last week I did two more Horticulture exams, exams number 5 and 6 out of 8. I revised for two months for these exams because they were hard. Lots of Latin names and features of plants to learn. I ended up dreaming about trees and randomly had names of shrubs popping into my brain like intrusive thoughts whilst I was driving or in the shower. There has literally been no time for anything else whilst this was going on. No more multi tasking for me. One thing at a time please.

I only have 4 months left now until my last pair of exams and the end of my 2 year course. This has brought up so many strange feelings. I have LOVED doing this course, yes it’s hard, but I’ve loved it. I love the fact I’ve learnt about something totally new, I love that it meant I had to get out of bed, I love that I met new people and I love that it’s something that has felt so heart-full. Something that resonates with who I am. But this now leaves me feeling a bit in limbo, where do I go from here? When this is all over what do I do next? I know I want to continue with Horticulture but I’ve no idea how. There’s a level 3 course available but no one in Northern Ireland teaches it, it would mean distance learning via Edinburgh and hopping over there to take exams. A lot of faff right? I don’t want to learn all this wonderful stuff and just leave it lying dormant in my brain to eventually disappear.

Horticultural Therapy is a route I’ve considered but on researching it’s difficult to find just HOW you get there, no specified route, just like post-TBI life I suppose. I’m in equal parts extremely happy and grateful to have nearly completed the course but also sad and lost about it ending. This as always has parallels with how Brain Injury feels. You spend a lot of time wondering just where you go next or where you have gone or how you fit into society anymore. It’s a strange limbo too.

All this time I’ve been unplugged from what is deemed the accepted way of living, I’ve grown. Just like one of my beloved plants I’ve rooted and shooted into my own space. The further I go into discovery the more and more I know that modern living has got it all wrong. Believe me, it has. I’ve always known really but never been brave enough to step outside of it fully. My TBI gave me a chance to peep behind the curtain properly and show me what is acceptable to me to help me grow and finally learn to love myself. I never did, you see, always so hard on myself chasing perfectionism, chasing chasing chasing…….well nothing really because ultimately it was always here. As a kid I was totally uncensored and brave and in the moment then life knocked it out of me as it does with us all. The young me didn’t question about being ‘enough’ or wonder if so and so would approve, she did it anyway. I like to think some of that has come back since my brain got a factory reset.

There was also the realisation that I no longer think obsessively about what happened. There are weeks now where it doesn’t even enter my head. I can still get frustrated about my LACK OF ENERGY and my inability to sustain activity. Do I wish I wasn’t fatigued? Of course I do, but I am, so that’s where we are. I still have a cry at times but I don’t think about it every day. Therein lies acceptance. All this time I’ve been waiting for a whizz bang explosion of glorious acceptance showering me with golden light but instead what it did was slither quietly into existence. No light bulb moment just gentle, expansive post traumatic growth.

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So I reckon with lots of falling over and near drowning and howling at the storm I may have, just maybe finally learnt to surf.

4

Dream with the sun and the skies

There was a time in my hazy past in the period directly after my brain injury when the thought of being 5 years along seemed like an untouchable made up place. When I was sinking in quicksand every day, 5 years into the future was a place that was full of exhaustion and fear. Today I’m hitting that 5 year mark, and it is a liminal time for me. A time when the deja vu that is my anniversary effect whips me backwards and forwards out of the present and into dark corners. A time of contrasts – great sadness followed by gratitude followed by fear.

I’m still making baby steps in my recovery. I’m still traumatised and lost and I’m also still having moments when I conquer stormy waters. There have been little light bulb moments happening to me throughout the past 6 months especially. Moments of learning and acceptance of myself. Moments where the TBI comes and pokes me in the eye again and reminds me that it’s still hanging around.

An example of this is my inability to socialise like I used to. When I have the energy to be around others I’ve discovered that it feels like I’m from another planet. I am not neuro typical anymore, I can not do small talk and I have lost my brain to mouth filter. I find that a mixture of social anxiety, unwired neurons and the fact that I don’t get to talk very much so when I’m around others I can’t stop yakking, all contribute to some odd discussions. I say things out loud that I need to keep to myself, I interrupt others, I do not shut up and I’m unflinchingly honest and open. I am acutely aware that I’m verbally diarrhoea-ing over everyone and that I sometimes say things that make people feel a little embarrassed. The end result is I feel odd, out of place and weird. I then tell myself that people don’t want to be around me and listen to me and that I’m somehow not ‘normal’.

‘Normal’ is a funny word, we use it to describe the average persons daily activity and behaviour but I know that there’s not really such a thing as ‘normal’ anymore. I suppose I’ve always been a bit eccentric, a square peg in a round hole, since my TBI that has compounded. But here’s the thing, whilst in the past my eccentricities have been something I felt I needed to hide to ‘fit in’ (a mistake if there ever was one, I needed to celebrate my oddness), I now, most of the time, don’t care a jot. I was told a few weeks ago that I’ve gone ‘a bit strange’ my response to that was that maybe I’m the sane one.

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I want to own who I am and where I’ve been. I want to own the beauty in my life, the things that make me curious and joyful. My strangeness is my strength. My strangeness is my medal, I earned it my friends.  I’m a tree hugging hippy, I care about animals and people and the Earth so I live my values as a vegan, I believe in Magic, I think universal love is massively important and powerful, I have a head full of fanciful notions, I read tarot cards, cleanse crystals, talk to plants, believe in ghosts and see fairies. I talk too much, I can be a frightened rabbit, I wear pyjamas too much, I am fiercely loyal and incredibly stubborn, I grieve and cry, I am exhausted and I give up many times. I am all these things. I am dark and light, full of contrasts and imperfections. Isn’t it wonderful.

Happy 5th brainiversary Braingirl. You made it.

 

 

2

Done and not done

This blog has been popping into my head the past week or so, I took it as a sign to pay it some attention. I haven’t written anything since May. I can’t believe how fast the past 3 months have gone. But as always with the brain injury clock it’s also gone really really slowly.  A contradiction that sounds daft but honestly, that’s how time passes for us who aren’t neuro typical anymore.

The past three months have also been a time of contrasts in my recovery.  I had a huge surge of energy that lasted a while around May/June then I crashed heavily for most of July. My depressive episodes have come and gone and I’ve spent some time hiding from the world when I got overwhelmed with everything. My time off Facebook however has been nothing but positive. I love not having it in my life anymore and I didn’t spontaneously combust without it!

There’s been some awesome stuff happening, we resuced a dog from a sanctuary (adopt don’t shop folks) and he’s a bit nuts and anxious and hyper vigilant (just like his human mother!) but he’s also fun and cuddly and smart as a whip. He’s my new best mate and thanks to Agent Cooper (we renamed him and it suits him so well) I’m embarking on another attempt at exercise. I missed exercising so much, I missed that it made me feel fit and strong. I got a hands free jogging lead for me and the dog and we’re now trying to follow a schedule of short runs until I can start to build up my fitness. This always brings with it a whole new wall of fear and issues to overcome around initiation and motivation. I’m great at ideas but not so great at following through. My brain is just not a fan of initiating action. That’s why I hardly ever cook anymore and when I do it’s simple quick stuff like mushrooms on toast. My lack of cooking activity is a task I really want to conquer, another day, another hill to climb.

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Just look at his face!

Another great thing is my enrolment onto Year two of my Horticulture course. I did 4 exams in my first year as well as attending lectures. I seriously never thought I’d make it through the first year, but here I am, one month away from starting Year two and hopefully qualifying. Then stuff gets real, I have to decide what I’m actually going to do with the qualification. I like the idea of Horticultural Therapy but that could all change by next year.

I also enrolled on a 6 week singing course over the Summer. I used to love singing but I lost it all post TBI. I wanted to give myself permission to use my voice again so did a quick course in Belfast which brought with it more challenges – fatigue, other people, driving around the city centre, going somewhere new and doing something very uncomfortable for me. But I loved it and I can now sing in the shower right from the centre of myself, belting it out with the best of them.

In amongst tears and fatigue and dog walking I’ve also had the first anniversary of our handfasting and had family come and visit. A challenging time but I definitely think I was more ‘with it’ this time than the last visit.

Along with the ‘done’ stuff comes the ‘not done’. I’m told to acknowledge my achievements and be proud (this is actually very hard for me to do) but there are always things that I desire. My guitar, my poor guitar. I still haven’t picked it up. I hate that it’s something I love but I can’t bring myself to do. There are fear issues around making my brain too tired but also the frustration of only being able to do five minutes on it before my brain does a loop de loop in my head and gives up. There’s also the fact that I’m starting again, from the beginning and that annoys me. Any guitar players who want to sit with me and kick me up the jacksy please get in touch.

Also not done is cooking, as mentioned above, no full on kitchen action for me. I used to be quite good at the old cooking malarkey, now it’s just a series of terrifying ingredients that I have no idea what to do with. I’d also like to learn another language. I have Brazilian Portuguese cds for the car but again, lack of initiation is my downfall. Maybe I’m setting the bar too high and need to start getting the basics of life into a routine again but I’m a dreamer and an ideas woman. Always jumping around in my brain from one thing to another of all these things I want to achieve. I reckon in my head I’m a renaissance woman, full of talent and creativity and the ability to do all things but in reality I’m brain damage woman, full of trauma and fear and slow neurons. One day the two women will be aligned and I will live happily somewhere between them both.

What are your big ideas that are frustratingly out of reach right now?

 

7

You just kinda wasted my precious time

If you look at my home page under the ‘social’ heading there’s one lonely YouTube button. There used to be one for Twitter and up until yesterday one for Facebook. I’m leaving Facebook you see, we’re getting divorced. A decision that has been a long time coming but the time is finally right.

I went on holiday about two weeks ago, a short holiday of 3 nights away on the edge of the world in Donegal. Whilst we were there we had no internet access and it was WONDERFUL. I actually read books and went outside. I was measurably happier. For a long time after my TBI the internet and more specifically Facebook became an avoidance tactic for me. When I was too knackered and frightened to do anything I would endlessly swirl around in a circle on social media, logging in and out just to pass time. I knew that this habit was not healthy. Mentally healthy.  Don’t get me wrong, at times it served a purpose, I had my wonderful Uk and Ireland support group to keep me occupied and at times prop me up when I was descending into PTSD misery. That group is also continuing to do great things for people with brain injuries and will no doubt continue when I’m gone. It was hard to tell them I was leaving but all things must evolve, including me.

There became a point where Facebook was like sitting in a café, one I was familiar with but for some reason I visited it everyday even when I didn’t need to. Other people I knew were in the café, people I liked. For some reason though, they just sat there and randomly shouted things that were odd, things they wouldn’t usually say but in Facebook cafe things JUST HAD TO BE SAID. That’s my first issue with it, the need to speak, to say things, to write commentary on every little thing, anything, as long as it’s written down and responded to. I found myself thinking this is not how I converse with people I like. The weirdest thing though was the strangers, the strangers sat at other tables who interrupted my world with racist or sexist comments, jokes that weren’t funny, chicken littles who every day said the sky was falling in, advertisements of pages I had no interest in, angry (mostly) men who didn’t really know what they were saying but JUST HAD to rant. I spent a lot of time moving tables in the cafe, away from the ones I didn’t know, a lot of time putting in ear plugs and shutting my eyes but you know what? like a babies nappy full of poo, they just kept seeping through.

After those three days of Facebook peace  in Donegal, I asked myself just what on Earth I thought I was doing. There’s no way in real life I’d tolerate this amount of nonsense for so long. But Facebook is very clever, it convinces you that you NEED it. Other people drugged by it try to convince you that you NEED it. I convinced myself for a long time that I NEEDED it, ” it’s a useful networking tool blah blah blah” “how will I ever meet people otherwise blah blah blah” But here’s the funny thing, there was a world pre Facebook where I still managed to talk to people.

So this will be the last post of mine that you will see me pushing on Facebook. Some would argue I’m shooting myself in the foot by removing an audience and ready avenue of advertising for my blog. Here’s the crux of the issue, I simply don’t care. I don’t care about Facebook and I don’t care about being a mega successful blogger. As long as what I do helps people when it’s needed then it’s all good.

I’m free now and it feels FANTASTIC.

4

When things go right

Hello all,

It’s hard sometimes after a brain injury to remember there is good in the world. It’s hard to believe that things will ever come good and that you will achieve wonderful, joyful, amazing things.

I’m here to tell you that you will. At first, it’s small tiny innocuous stuff like vacuuming the living room or putting the kettle on that then progresses to stuff that you never thought you’d be able to do ever again.

One such incident occurred with me recently, as you may know I’ve been studying Horticulture. A two year course that I’m currently almost halfway through. There are eight exams to sit with this course, two of which I did in February. Pre brain injury I had a photographic memory, I could read something once or twice and it stuck. Now I have to go over and over and over something before it begins to make any sort of sense to me. When exam time loomed I panicked, there was absolutely NO WAY I was going to remember all this sciencey stuff, all these strange names and new concepts.

So I did what I have to do with everything – I adapted. I started revision weeks ahead of what I would have usually done, made extensive notes and read them again and again and again. I’m so effing chuffed to tell you I got my results back this week; two clear passes with one commendation!

I doubted myself and my brain because I’d become ‘victim’ to my brain injury, I was in a place where nothing goes right and my brain is an organ that just lets me down. Well TAKE THAT LITTLE VOICE, my brain did good, REALLY good. I’m proud of myself for forging forwards even when everything felt stagnant and lost.

If I can do it, you can, I promise, it takes time and patience but I’m here cheering you on. Let’s celebrate small victories. What have you conquered recently?

2

Braingirl bonus. Video catch up. “I just want to grow plants and sing songs”

Hey there,

It’s me, I’m back. A load of old waffle (approx 15 mins) about what’s been occurring for braingirl. I talk about exams, fatigue and simplifying life amongst other things.

The usual surreal touch of going out of synch has not been rectified as per. But who worries about that sort of thing?

Enjoy!

0

Solstice and the festive season

Hello there,

I hope this post finds you all well and making little steps forward. Today I took a camera out on a Solstice walk with me so I could share it with you but I deleted the files by accident (yay brain!) so plan B was to film in the garden to at least get something done.

I wanted to write something short today about the festive season and the pressure it exerts on us all and how that is so overwhelming for someone with a brain injury. This time of year is hard for many people for a myriad of reasons, it can be a lonely time and also a reminder of things we have lost too. It can be hard financially as well as emotionally.

With a brain injury it becomes a time of extreme overwhelm physically, emotionally and sensory and all these things together add up to relapse and many days in bed. Whilst many of us would like to join in more with family gatherings its just not possible to maintain the level of energy needed. So if your loved one has a brain injury don’t feel they’re being awkward if they leave early or don’t make it at all, they’re simply unable to cope that day.

As for you my brain injured brethren, remove guilt from your vocabulary, DO NOT feel guilty if you’re unable to last more than a few hours or if all the people talking causes you to feel irritable and you need to escape. BE SELF-FUL. Do what you need to get through safely and calmly.

My number one tip is to do your own thing. This is what myself and Mr Braingirl do, Christmas is not a time we celebrate, we get ours in a few days early on the Winter Solstice and celebrate Yule with a nice walk, nice food and a fire. We’ve done this for a few years now and I’ve survived the festive season feeling peaceful and refreshed. There is absolutely no obligation to do anything that you don’t want to. NO regrets, NO apologies. People who love you will understand and not pressurise you into doing something you don’t want to do. If someone does try to pressurise you then be brave and give them a great big NO. Remember you live your life for you, nobody else.

If you do the big family thing, remember small chunks, lots of quiet rest breaks in another room, ear plugs for the noise, lots of hydration (I mean water not the Xmas booze!) and get yourself home and in your pyjamas when you’ve had enough.

Here’s a small part of my day today I want to share with you. I’m always available to contact if things get tough.

 

Have a Merry Solstice everyone, welcome back the Sun and let your light shine brightly.