Saturday, 19 October 2013

Thought for the Day #17



A very lovely friend sent this to me...


"There are always waves on the water, sometimes big, sometimes small, sometimes almost imperceptible. The water's waves are churned up by winds, which come and go and vary in direction and intensity, just as do the winds of stress and change in our lives, which stir up waves in our mind. It's possible to find shelter from much of the wind that agitates the mind. Whatever we might do to prevent them, the winds of life and of the mind will blow, do what we may. "

"You can't stop the waves, but you can learn to surf" (Kabat-Zinn 2004)

Thursday, 17 October 2013

Dear Alex, Light?




Dear Alex,

Warm October day, light all around and the distance I can see vast...reaches my soul, certainly makes me whole. Despite the anxiety, the apparent need of my heart to burst from the confines of my chest, the pain that leaves me with, the headache. I know what the feeling is though, there's no point searching for reasons.

The dog has been back and forth to the vets for the past fortnight, had 3 operations and now I await results of the biopsy they have done. To those who don't have pets, you will not understand. I don't mean that in a patronising way, but without ever having experienced having 'man's best friend (they are called this for a reason) or your old faithful by your side, through it all...you just can't understand. His eye is red and swollen, they think it is a tumour. On hearing this I physically go weak at the knees and have to sit down. I sob down the phone to my vet. I just cannot help it. Oliver was the 'original' the dog I got but a few months before meeting you. How adored he is, how soppy, how happy he is just to be with us. I have a feeling that al is being stripped away from me. You, perhaps Oliver...And I am so sad.

Although today the focus I have been able to have on you and for you, being gentle, compassionate, patient- not that I am not usually  this way with you- but today I felt different, rose above any sadness I had, had not a thought for me, just felt for you, tried to listen to your inner being, because, as I thought to myself this morning, because perhaps the wailing is your spirit, your soul calling out in agony. You can't put it into words, because it is a feeling deeper than any of us has ever felt, the pain of what you are going through. Maybe, I think, this is at the root of your noise and behaviour? It makes sense. Especially that nothing can break you out of it, because it is all you can do-groan and wail, I would understand why.

At the dinner table, you point, point to the French doors, saying 'light, it's light' I keep calm, ask you what you mean, you explain simply that there is light in the left eye, like the shape of an 'o'...I question, request ion, ask if it is something you see, or a hallucination, like a floater or something in your eye, you say,' no it's not that, it is definitely light'... I leaped inside, but do not want to get my hopes up that something may be happening there...I will question you again tomorrow. I am trying not to be excited.


This afternoon you calmed for several hours, you smiled even.

Alex, please come back, please don't let your soul give in to how horrific and crippling this is, please let yourself be loved by me, by the kids, accept this, it's yours to gather and possess and hold on to and keep, to make you stronger, to give you courage, and I need you to see this. Don't let your soul be defeated, keep on coming back and let yourself be healed...by all who love you, all who believe in you and all who are behind you.



me xxxxxxxxxx

Wednesday, 16 October 2013

Dear Alex, Solving a puzzle...




Dear Alex,


Winds carry the sound of waves, mighty, the stars shine as clouds translucent skim, race over the night moon. I listen, for a few minutes it is all I can hear, and the wind freshens my face.

It has been a busy day, yet a productive one. One lesson I have learned and try to adhere to through this experience, is never to have a knee-jerk reaction. Not to do anything in the first instance, if you can help it! To breathe, to breathe out the feelings that make you want to run, hide, fall.

I assess, I ponder, I sit (internally whilst on the run doing all I must!) I write.

I write out all the negative things and feelings this gives me, how you 'treat' me, how sad I am, how my heart races, chest aches, breaths are sharp and short.

I write from an outsider's perspective what advice I would give myself, I write from your perspective, from before, without visualising you too much, or I will break, what advice you would give me from the outside looking in. I compile my various options, and have a meeting with the CCG (effectively the NHS body who allocate funding to you for therapies, carers etc) and then I think some more.

Today I visited a place. And I listen to my still quiet voice inside, which doesn't fail if I listen, it guides, the Most High, however angry I am that He doesn't seem to be listening, doesn't seem to appear in the way I plead with Him to, guides continually, of that I have little doubt, although I shout and rage at Him...

I write my goals, shirk the natural feelings of thinking this is all too much, I cannot go on.

I feel.

ANd I came to the conclusion that your behaviour, although there is no immediate trigger, that your behaviour comes out of your not being ready, YET, to be at home full time. Not without significant input. It is as though you think now you are home, that this is it, how you are...forever. And it is NOT. But your inner self doesn't seem to understand this and it fights it. YOu become angry, aggressive, agitated because over a few days of better times, you suddenly change. I believe it is the chemical balance in your brain which shifts and you 'lose it', because you cannot articulate and cannot motivate yourself to get yourself better, you do not know how, and the frustration of being at home with me and the kids is so intense, it rubs in your face who you are not. I think it is a reaction to a build up of this.

I explain this to the lady I met at the Rehab place today. I may be able to get a happy medium. Although I do not know yet.

But making some sense of this helps. It gives it some logic. It makes me feel no better, but I need to find a solution, so that gives me a drive, something to work towards.

YOu need help and input with your behaviour. You need physiotherapy-as I pointed out, you are regaining strength, getting stronger, and this needs to be worked on, not lamely done in the house with no direction or purpose. If you went somewhere to do these things, you would be feeding your brain with the language that you are somewhere working to try and get better, rather than feeding your brain with the theory that 'this is it, you're home now, this is it...' And that, right there is it, at the bottom of this I just know it is...Solving a puzzle.


Oh my baby, how tear stained my face is, how my eyes burn through weariness, sadness...

We have to try something else.

I will never, ever give up on you, none of this is your fault, and I am here to look out for you and be your voice and help you.


We will somehow get through this angel, I promise...



me xxxxxxxxxxxxxx


Tuesday, 15 October 2013

Dear Alex, Knees buckling.

Dear Alex,

We made some yummy meringues! Alex whisked the egg whites...


Bright, clear, crisp morning, breath clouds before us as we fall out of the door, dog in tow, for the school run. I hide sunken, heavy eyes and hope the eyeliner is doing its job this morning.

I don't think I can ever hope to put into words what this is, having you home. When I lose you in the times you wail and are angry and aggressive, it is like someone has knocked at the door again and told me my husband is dead. It's a feeling of utter devastation, panic, grief... As I try all I can with you. I've dedicated my life, my everything, every last bit of me to you and the kids, and my thanks is a large egg on my head where you head butt me in fury a few days ago...one of the many incidents. So with the knock on the door feelings, I try and console an inconsolable stranger in front of me who apparently detests me...I start to resent, feel you are draining me of everything I have, and soon I won't even be able to have the energy for the kids- and I know you would be the first to tell me to put them first.

I feel worn out, I don't sleep well either as Mitzi and Esmie wake several times, and I lie awake for hours, dreading any noise that may wake you and set the cycle of inconsolable wailing off again.

I worry constantly about the kids. It could be them, the times when you lash out. What if you caught them? It could be so very serious. I worry that their witnessing it will disturb them and affect them permanently.

I cry as Monty clings to me in tears begging me to stay at home with me and not go to school. Our little boy, just that-a little boy- as he wipes tears on my coat, buries his face in my tummy. Lola is off school already with 'tummy ache'...And I spin, my head, my thoughts, my feelings, as I try to work out what is going on.

I think my lioness instinct kicked in again this morning, seeing the kids as upset as they were, knowing the days we have passed since Friday. There's no let up...it continues in this vein. And I do not know when we will pass through the other side-if at all?

SO I call a meeting with the PCT, the district nurse who are heavily involved in caring for you.

I have to consider all options. I want you to stay at home. I hope there will be some compromise, some solution.

The chest pains I have had and numb left arm sent me rushing to the Dr today-an ECG shows a very slow, but otherwise normal heart beat, so I am reassured. But I know the strain I am under, and I know no one could take it, and I have to act before it is too late...

You shout downstairs, I have the kids tucked up in bed finally. You will wake them if you carry on...


I am so tired.

I have to find some other solution.

I know you have amazing potential, physically you are really regaining strength, and this is so positive. I am looking to see if there is a rehab centre you could be a day patient at. That way you would still be living at home and I wouldn't have the guilt, the terror of you being confused, alone, without your family...I just couldn't do that.


Please God, I pray a solution is reached, and soon...I feel my knees buckling.



me xxxxxxxxx