Grief, loss and alzheimers

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In 2013 I had my first experience of grief, true, moving, heart-wrenching grief. It was a time in my life where I wasn’t sure if I could carry on. Simultaneously I became a carer to Martha, I supported her through her grief, I remember on the 2nd morning of Dad passing, his body laid out and Martha nestled against the coffin, she woke up in shock, confused about what had happened, needing explanation. I had to tell her, yes, what she knew in her heart was true, her husband had passed away.  Over the next few months, we journeyed like this, dancing with grief and loss. I explained her husband died, she cried, she forgot and so the cycle repeated.  I didn’t do my grieving until early 2015, I lost a job and everything came to a head. My heart was imploding as I faced this impossible task of life, up until this point I had a purpose which was wrapped up in my monetary value, without that I knew nothing of surviving life. I had been reduced to my carer identity, I was an unwilling participant in the caregiver role, and now I had found myself in that role permanently.  I survived the grief, I grew from the grief, I journeyed in the grief and found the parts of it that made me who I am, I believed I would not face grief again until Martha left this earth.

Over the years I have learnt to manage my grief and sadness with Martha, when I smile she smiles, when I laugh she laughs, when I’m angry she is angry, and when I am sad she is sad. She is overwhelmingly sad, her eyes tear up, her bottom lip drops, she is confused and heartbroken. She absorbs emotion like a sponge, I reserve my tears for quiet moments alone, showers, bed, car rides alone.  When news began to break of the March 15th terrorist attacks I could not contain the grief. It spilt into every part of me, leaking out in sobs, tears, uncontrollable rage.  I was heartbroken, devastated, cycling through the stages of grief. The world as I knew it was changed forever and I could not stop the tears from flowing. Martha cried with me, not knowing what the tears for her, her heart ached, her soul bled just as mine did, I could not contain the devastation that was erupting and I could no longer protect her from the grief.  The common misconception is that people with alzheimers have no worries, don’t experience the same things we do, this, in my experience, is not true. Martha feels everything, she absorbs the happiness as well as the sadness. She can’t translate anything into words but she transmutes pain into love. The beauty of having no judgement, no hatred, no thoughts is that life is lived on a wairua level. Grief is a time when I can’t hide my emotions, instead of holding so tightly to them I have begun to let go. I wrap my grief tightly around me, keeping it safe from Martha, but as I learn and grow in my emotional capacity, I am learning to allow Martha into this world, to use her superpowers to transmute pain into love.

Always with Love,

Kyrin x

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Dealing with S**T (some tips)

10347478_10153016996002679_7955103008461057598_nToday I picked Martha up after a 5-night stint in respite. It is a funny space respite because on one hand, I feel relief from the day to day pressures of being on a caregiver, but that is quickly replaced by the anxiousness of the quality of care in her care home, by worrying if she is ok, if she is being treated well, the list is endless and all-consuming. Picking her up from respite brings about the relief of one anxiety and is replaced by the next. It is an endless cycle.

Back to my original point, today I picked her up. And within the space of about 3 hours, she has had 3 bowel movements. THREE BOWEL MOVEMENTS! Hence the title, dealing with S**T.

Dealing with an adults bowel movement is one of the most challenging experiences to date, there are many ick factors to it, a lot of disinfectants and many many showers. It is one of those things where just when you think life couldn’t get any harder, life literally shits on you. In everything there is always a learning moment, whether that is learning the limits on what you can handle, learning boundaries, patience, kindness in the worst moments, there is always a learning. Today I learnt that I am more resilient than I thought I was. Today I learnt that no matter what if shit happens you always keep cleaning it up – regardless of how tired, lost, grumpy you are. Today I learnt that having lots of gloves/plastic bags (biodegradable of course)/disinfectant and spares close is going to save your life. So here is a list of tips that will help you if you are in the same situation!

  1. Get yourself some disposable gloves and get lots of them. This was something my dear friend Hana told me many many moons ago, I will never ever forget the sense of relief at how practical this tip is.
  2. Keep plastic bags everywhere, you never know when you are going to need them, they are hand for so many things. Not only keeping soiled clothes/diapers but also as makeshift seat overs and protecting yourself from yuckies.
  3. Always keep candles/incense handy. Seriously, this has saved me countless times. I now burn incense every time we have a bowel situation. It keeps me from throwing up, it’s like an added layer of protection.
  4. Don’t be too hard on yourself. If you have to leave the person you’re caring for in the shower for a few minutes while you step out and get some fresh air. DO IT. This is a terrible situation and in all of this, you gotta do you.
  5. Treat yourself to some really good smelling hand soap and hand cream. After all this your hands are going to be wrecked, I wash my hands what feels like 100 times after one these times, so having nice smelling soap and hand creams have been a lifesaver.

    and last but not least…

  6. Take care of yourself… be kind to yourself… because you are doing great!

Always with Love,

K xx

An update…

It has been a while since I have written, I have a lot of half written pieces of prose. I have been dealing with my own depression this year, as I move forward in my life with my study and career, Martha’s life is really slowing right down. I have had a hard time coming to terms with that. As I have said many times before I know the outcome of our situation, one day Martha will no longer be in my life (in physical form) and now as we almost complete our 5th year in this role reversal it seems even more unimaginable how I will continue to move forward without her.

But this post is not about that, I wanted to share some updates with you on Martha’s progress. While I may going through my own depression, Martha continues to thrive in her happiness. In our nearly five years together as caregiver/cared for this is probably one of the consistently happiest times of her life. Her smile lights up a room, her hugs connect you with the spirit, her comfort soothes the soul, her compassion and empathy heal. She is truly filled with Love, and all she has to offer is Love, sometimes I feel so undeserving of her Love as I force her to shower, or eat something she does not like. She has no capacity to hold a grudge, to want revenge, she is always present with me.

On an external level of progress, her Doctor’s are really happy with the way she has progressed.  While she has lost a lot of her speech and isn’t able to have a conversation, she still understands and recognises people, is no longer having delusions and hallucinations and really has no other health concerns. She like a lot of 70-year-olds is slowing down as a part of ageing but otherwise, she is healthy (that we know of).

One of the trickier aspects of Alzheimer’s has been the medical stuff. Finding out the underlying cause of infection is not as simple anymore, and I have had to find my voice when it comes to advocating with Martha. How do you give consent for someone who doesn’t know what is happening? Will this procedure improve their quality of life? About 18 months ago we had a situation where her blood tests continued to show abnormalities, we were told she potentially has cancer. After much consideration, I decided not to proceed with any further testing because… what would be the point? The Alzheimer’s would not improve and possibly be made worse by the invasiveness of testing, and how would it affect the care I am able to give? Here we are now, her health has not decreased, she is not suffering, she is happy.

She is happy, and we are happy. A few years back I think I enjoyed the pity sympathy that others would offer, I would get a lot of “you’re so young to be a caregiver..” “I’m sorry this is happening for you..” However, over the past few years, I no longer view it as that and feel a sense of anger when people offer me their sympathy. Don’t feel sorry for us, yes, Alzheimer’s does suck ((it’s the fucking worst)) but it has also afforded us many wonderful opportunities that we otherwise wouldn’t have had. But I will save this for another day!

As always, sending out so much Love from Me, Martha and Alzheimers xx

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic”

P.S – I am hoping to get back into writing again! So keep watching xx

Blessings in everything

Six months ago the thought of calling alzheimers a blessing would of filled me with rage. How dare those words tumble from someones mouth so ostensibly! Alzheimers is not, in any way a blessing.. and yet I uttered those exact words a few weeks ago to someone I didn’t know, she looked at me with pity in her eyes..

“But, you’re so young to be a caregiver..”

I replied, “blessings in everything..”

“Well” she said, “that isn’t true. It isn’t a blessing, really?”

I thought about it for half a second, and then politely disagreed with her. It is true, there is a blessing here.

The blessing is that I truly understand what Love is, I have been witness to the purest form of Love, Love that has no boundaries, no fears, no judgements and it has changed my life fundamentally.

I remember watching Martha, she spotted a man at least 20 metres from her, I instantly knew she was going to hug him. She charged ahead and before I knew it, she had enveloped him in her Martha way. As I caught up, he was in tears, they were uncontrollable as Martha kissed his cheeks and held him. I knew then, from that moment that I was truly in the presence of Love. She stood with this man, communicating with him only in her energy, communicating with him by her embrace that she Loved him. It is truly something to see what unconditional Love looks like, it isn’t for everyone, it can also be really scary for some. I think as we move through the world we become a little more weary, Love comes with lots of different conditions. I have seen people be skeptical of Martha, stand back from her, her energy only ever so slightly touching the surface of theirs. I have seen others fall into her Love, absorb it as quickly and as much as possible. I have countless stories of how beautiful Martha’s love has been, how healing it has been. I have seen her embrace people as if she has known them for years, having only spotted them as she walked by.

It is an odd thing to say, we are better off with alzheimers. I would never wish alzheimers on anyone, but the lessons I have learnt have been incredible, the connection I have now with Martha is the most intense it has been in my memory, perhaps what a new Mother experiences with the release of hormones as she holds her baby for the first time, realising that she didn’t know she could love someone so much. This is how I feel now, as if I have been given the greatest gift. I have been given my Mother, to Mother.

Don’t get my wrong, of course it saddens me that she has alzheimers, alzheimers is cruel and unrelenting, but it also surprises you, teaches you, pushes you to places you never thought you would go. It will consume you to the darkest depths, but it can also send you to places you never knew existed. I have felt the super power of Love, a place I did not know existed until now.

When I say blessings in everything, I truly mean that. Alzheimers is not a blessing, but it has been.

Much Love,

K xx

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When the Universe speaks, you listen

I experienced my first ‘real life’ connection to the Universe a few years ago, I still remember it as if it was yesterday and can still bring about those feelings when I think back to the time. It was insane. It still makes me get shivers and it lead me down a path of no return. I was shown on that night the true purpose of my life, and whilst I can’t articulate that purpose to you, it resides deep within me. In that moment it felt as if my life was so minuscule and expansive that not a single thing could contain it. For the first time in my existence I knew and understood that I was part of the universe, and that the universe was part of me. For the few following days I continued to be connected to the universe, I saw my ancestors, I sat with them, ate with them, and bathed in the waters with them, I learnt from them and took their offerings. I saw my life lay bare in front of me, showing me its realness.

I have not had the connection for a long time, I have sought it time and time again. Searching under rocks, in sand, through puddles and oceans. I have sat deeply in search of it, I have had it blow through me but never stick, I have written and regurgitated it. I have sniffed it, tasted it, teased it but not once have I been able to hold it firmly in my hands.

I know that it is there, waiting for me to hold it once more. I can speak fluently about it, as if I was connected to its language, I can talk on it, tell you what it tastes like, smells like, feels like and yet I have not been able to conjure it up again.

Until tonight. I attended an event, it was a great event, derived of connection, but it was by no means a place where I thought the the universe would sit. It was held in a building, 50 or so people contained within walls, weak walls that meant you could hear the clanking of bottles and clapping of hands of a different crowd having a different experience through its thinness. And yet, here on this hard seat, amongst strangers, I was having an experience. A true and enigmatic experience. It wasn’t until afterwards, and even until I allowed this to flow from me that I realised what it was.

I once again got to hold the Universe..

I stood in a room of greatness, of Men and Women who are great. I listened to speakers who were experts in their fields, I listened with the ears of a new learner, I absorbed, reflected, deflected what was being said. I mixed, I hugged, I connected, I praised. And as I hurried away, needing to retreat to my reality I realised… I stood in a room of greatness, because I am greatness. I stood with the Queens and Kings of my realm and experienced a universal download in which I listened and heard the universe, in all its infinite wisdom say to me.. you are great..

And I realised again, that if you truly listen, if you truly look, you will see that the universe is speaking to you, that your God is speaking to you, that the blood that flows through you is speaking to you, and that none of these things want for you to struggle, none of those things want for you to suffer, the true want of the universe, the true want of your God, the true want of your blood, is for you to sit in your greatness and experience yourself as the Universe, to sit in your service, to sit in your purpose and to truly know that you are part of the Universe, and the Universe is part of you.

This might just sound like the ramblings of a mad woman who hasn’t had enough sleep, but for me right now, this experience is fuelling me, to continue seeking connection, to continue seeking life and to continue listening to the Universe.

Thank you, Universe.

K x

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic..”

2017 won’t be great..

This time of year thoroughly excites me, the anticipation of a new year, new beginnings, it is a time to create goals, set intentions, and make lists. There is a certain promise that comes with the rising of a new sun attached to a new year. Each year I diligently plan ahead, what do I want to achieve? Who do I want to be? I add the same few things to the list that I have been etched in the resolution hall of fame since the dawn of time, lose weight, save money, drink less, and then I get to think about what else I want from the year. Each year ending with the resolve that the next will be amazing, different, better. I’ve only  had a few amazing years in my time, maybe two that I could say were the best years of my life and whilst I still hold that same anticipation and excitement as we welcome a new year, I know that 2017 won’t be great.

Don’t get me wrong, this year gone, for all intents and purposes was a good year. I launched a new business, I started back at uni, I re-established my life after 2 and a half years of grief and loss, and while I professionally propelled forward, excelling and achieving at every step, my darling Mother did not. She got worse, progressively worse and with each step it got harder, the suffocation of Alzheimer’s gripped us both and we both struggled, Alzheimer’s did not treat us well this year. This is the way it will be until her death, a downward slope of loss and hopelessness, and then I will encounter the grief of death once more. And as I type I think, how can I continue? How can I move forward with this looming over me? The answer is, sometimes I don’t want to, sometimes I cry and scream and shout and hurt, but most times, I don’t have a choice. Neither of us choose this path, and no one would ever want to be on it, but now I as I walk this path with my Mama, I do have a choice, and that choice is to walk with her till the end regardless of how hard it will be.

Of course I would love a better year, I would love a great year! I am planning, mapping, I have many things to look forward to in 2017; study, my flourishing business, holidays, but I hold no hope that the year over all will be great. This you might say is a little pessimistic, and perhaps yes, but I have learnt my lessons. Grief and Alzheimer’s do not make for good years, Alzheimer’s in particular will not treat me kindly this coming year, and it would be ignorant to think so. Alzheimer’s as you know, as I have written about over the past few years is a cruel beast, and with every passing day it seems to lurk in the background, waiting to take its next piece of Martha. It will take from her until she cannot take it any longer, there is no medicine anymore, there is no miracle, and there is no hope.

So I sit here thinking about the year that was and the year that will be, and it is ok that 2017 won’t be great, because, perhaps as we age and become wiser the years no longer need to have that glow. Perhaps they can just be the indicators of things we’ve gathered along the way. Maybe this year I will learn to scream and shout less, perhaps I will learn to heal my heart enough so that the next time it is broken the pain is not so severe or perhaps I will learn to be grateful for the small things, for the small miracles the occur in everyday life.  For now, I can’t say what I will learn, but I look forward to finding out.

Bye to 2016.

Love, K xx

“if you resist it, it’ll be cruel to you, if you let it in, it’ll be magic”

Letters to my Mama… part 5

Dear Mama,

I haven’t written in awhile, everything seemed to plateau, I think the last time I wrote was about three months ago and tonight it seems to be pouring out of me, literally and figuratively.

I miss you, and when reading my last post I wondered if you missed me too, if all you wanted was for someone to bring you water, rub your back and tell you it was going to be ok, because sometimes when I get caught up in the burden of being a caregiver, I forget how hard it must be to have Alzheimer’s.  Because whilst I care for you and do everything for you, it must be a very lonely and sad place to live for you, because it is for me too.  A while ago I was watching Lilo and Stitch and there is a line from the movie that says

A while ago I was watching Lilo and Stitch and there is a line from the movie that says “what must it be like to have nothing? not even memories to visit in the night” and when I think of that, it breaks my heart, because my mind is so full, at times I feel glutted by thought and yet you have nothing, maybe you do have things, and maybe I am being awfully negative, but it seems to me as though there is not much available to you anymore.  A few memories surface every now and then, you smile occasionally, but for the most part, you seem sad and alone, and I am stuck in my sadness and my aloneness over here, and it doesn’t seem fair that we are doing this separately, together.

I miss you, Mama, looking back at photos of the past is the worst, seeing you how you were, seeing who you were because that life seems so far away, even just six months ago seems as though it was a lifetime ago.  I saw photos of you and me from our trip to New York, it was such a different time, you had just started having your delusions but you were still my Mum, and I miss you. I miss that.  I miss us.  And part of me feels burdened by this caregiver role, but the bigger part of me doesn’t want to lose you, in any capacity, not by you going into a home, and not by death. It feels messy at the moment, I miss like I am a mess, because I miss you, I need you, I need my Mama.  I get jealous of other daughters and their Mum’s, of the relationships they have, the time they get to spend together, the conversations, the advice they get, they give, the comfort, and it feels so empty to have you here as you, as the woman who sometimes looks like my Mama but can’t communicate with me. It’s a mess Mama, and sometimes I just want you to help me clean it up. I will write again soon, but for now, just know, I love you and everything will be ok.

K xx

 

Friday nights

Disclaimer: This is an honest real account of what my life is like caring for a person with Alzheimer’s, and whilst I appreciate your concern please avoid giving me advice on what you think I ‘should‘ be doing. I have regular respite, I have regular counselling and have a great support network.  Also, I swear a bit in here so if you aren’t into swearing, avert your eyes now. Thanks for reading.

It is 9:42pm on Friday the 4th of November 2016 and I have just thrown my guts up. Martha went number two in her diaper for the second time today and I couldn’t handle it. As soon as I saw it I just couldn’t even handle it, I felt this huge adrenaline surge that manifested itself physically. And whilst I was trying to clean Martha up, I am also trying to not throw up on her, literally trying not throw up on her and not on the carpet, and I’m running to the door with the diaper, yelling at Martha not to touch anything and I throw up on the doorstep while I reach for the bin outside. And Martha has gone into the bathroom and come out and is heading for the couch and I am screaming at her “get back in the fucking bathroom” while my body rejects most of what I have eaten today onto the kitchen floor.

And so I finally get to the bathroom and there is shit, everywhere. So for the second time I have to clean my bathroom, and by this stage I have a bucket and Martha is in the shower and I am simultaneously throwing up into my sad blue bucket, while I shower Martha. I give her instructions, I turn her around, I throw up, I cry, I yell, she tries to turn the shower off, I turn it back on and she is clean and it feels as though I am covered in vomit. I instruct her to dry herself while I attempt to clean the bathroom and I AM IN HELL, I have tears streaming down my face and I’m throwing up and I can’t handle it and my mind has gone crazy, and Martha has left the bathroom. I find her in bed, naked and I want to flip the fuck out. I honestly want to throw the biggest mutherfucking hissy fit, but I don’t, I tell her to get up, put this on, put this on, I walk away to finish cleaning up some of the mess and come back and she has at least got a new diaper on before she has gotten back to bed, so I stand her up and dress her. Get her meds give them to her and shut the door.

And it is as though my mind and my body are separate, because my mind is going mental, it is spiraling quickly somewhere deep and dark, but my body is carrying this sad blue bucket, throwing up and wiping shit off surfaces and cleaning vomit off the floor, and then when my mind and body finally sync up, I am able to ask; “is this my life now?” and “if this is my life, how long is it for?” Because I am exhausted and I am lonely, and I am trapped, I am burdened by a choice that I made to care for Martha. And tomorrow this will all change and of course I will be grateful, and I will care for her and respond to her as a daughter, but right now it feels impossible, because what I most want is for my Mum to rub my back, bring me water and tell me its ok, and instead all I can see is a stranger with sad eyes who won’t let me have a shower without trying to get in.

Alone

I’ve been going through some stuff, some psychological challenges, physical challenges, realisations and realities and have allowed life to get on top.  It isn’t all bad, I have recently launched a new charity, a new business with a friend, and a new business importing crystals to NZ.  I am at uni studying counseling and feeling challenged by my peers.  I have good relationships, sisterhood friendships, I have good sex and late night chats, I eat well, too well, I have a PT who pushes me, I smile, I joke, I laugh, I care, I love, and yet, It is so lonely being a caregiver and recently more lonely than usual.  An only child is a hard thing to be when your parent becomes dependent on you.  I do the best that I can and after three years I think I have found the balance of lifestyle and managing martha that I so desperately need.

For the most everything about caring for martha is manageable, it is expensive and sometimes this takes its toll. I need to learn to manage my money a lot better, but part of caring for myself is going out so finding that balance has been difficult.

I rely on friends too much, I often worry myself with how appropriate it is to bring martha to events or outings with me.  I often don’t have a choice, or lack of organisation has meant I must bring her. I think I could just stay home, not go out, but I know if I isolated myself any further it would spell disaster.  It puts me in a tough position. My friends, my few friends who I rely on entirely too much are all I have. I pay people to care for Martha. I get some funding to do that, but nothing near what it costs. I have no family help and it frustrates me, no brothers or sisters, my closest cousin lives an ocean away and I feel isolated from the family I do have in Auckland.  I feel isolated.

I sit down and start typing, as I type I pray, I pray to Martha’s spirit, to her soul. I ask for her comfort and love, I tell her I’m sorry that I have isolated us, I haven’t meant to. I tell her how hurt and mournful I am about losing dad, how hard it is, every day.  I tell her I am sorry she doesn’t see her family more, but that I can’t communicate with them, I was never really one of them and even more I feel further from her family than I ever have, I tell her how I feel and how hurt my heart is.  That I am still holding so much anger from when Dad died. I tell her spirit that I don’t know if I can let it go.  I know that family is important, but I think for now Martha, that family is just you and me.

I let my mind wander. I repeat the words just you and me, they break me. It’s just you and me and the sheer horror that one day it will just be Me starts to sink in, again. Please don’t leave me Mama.  You are already so far away from me, don’t go any further.

The battle of Anger and Guilt

Anger floods me, it steals my breath and breaks my heart all in one foul swoop. Angry about so many things, the world, martha’s illness, martha, situations with friends, for friends, family, everything.  I feel suffocated by the world, by it’s problems, and yet life feels good.  Business ventures, relationships, lifestyle, it all feels good, this is when the guilt sets in.  Because I shouldn’t be angry, look at everything I have. In this moment I know I am about to spin out and in my head I imagine a master of ceremonies, vintage dress, a maroon velvet ensemble, and with his megaphone he yells “let the games begin.”

Tonight I stood in front of martha yelling at her for not telling me that she needed to go to the bathroom, I yelled about how this was the third time today, how I didn’t want this, I repeated over and over that I.DID.NOT.WANT.THIS. She looks at me vacantly, I have no idea if she understands the words that are pouring from my mouth, if she hears what I says but I worry that her own shortness of breath is fear.

I stand in front of her and tug at her clothes for her to undress, frustrated I hurry her and she complies.  Internally I battle guilt and anger, they both make appearances;

When anger hits I become breathless, rigid, stern and possibly frightening, when guilt swoops in I become teary, remorseful, agitated, I want to break down, I want to throw the mother of all fits.  

This all unfolds whilst I undress Martha for her fourth shower of the day. She is in the shower, I systematically wash her, command her, hand her things, shampoo her hair, rinse, turn off the shower.  I hand her a towel and as I walk away from her to fetch clothes I yell ‘dry yourself’ when I return, she hasn’t.  She is still standing, holding the towel in one hand while the rest of it soaks up the water in the bottom of the shower. Anger takes a hold again. I close my eyes and count, I manage three seconds and it reminds me of the last time I had ink to skin. Towards the end of my last tattoo I could only manage to count to three before starting again, that three was devoid of anger, but the three was for control.  This felt the same.  I was counting to three to gain control. I systematically dried her, efficient, devoid of affection, I commanded her through to her bedroom where I dressed her, her expression did not change. I closed my eyes again, one, two, three. Handing her clothes, instructing her what to do.  We finish, guilt has taken over, I want to say sorry but the words are stuck.  She gets awkwardly into bed, it looks uncomfortable, I feel the anger starting to rise, I force a few words from my mouth, I glare at her and she shifts into a more comfortable position.  I can’t read her expression, it is the same one she has had all day, I can’t read her face and it infuriates me.

I leave her room, I pull the door shut behind me and breathe. I hadn’t realised I have been holding my breath the whole time.  Anger and guilt are still thrashing it out, I try to calm my mind, I tell myself this always happens when respite is close, she is getting worse and you should be prepared for that. I flurry myself around the house, tidying, cleaning, putting things away. I take a valium to aid with the increased surge in adrenaline, another story starts to play out in my head, my frustration with a naturopath.  I let it play on for a few minutes before closing it down. I slip myself into bed, frustrated, angry, guilty, sad, lonely, mournful and the only thing I can think to do is type. Attempt to find some peace. So I type, I share and I hope that someone will read this and say this happens to me too.

Much love,

K x