I’d Rather …

dreams-alone

I’d rather write about this world than live in it and I’d rather read all day whilst drinking tea. I’d rather wander around, relatively pain free, in book stores, antique shops and flea markets watching humans but not be one of them. I’d rather give the precious seconds of my life to the man gracious enough to love me back, than waste time on dealing with the world’s perpetual disappointments, cruelties, dashed expectations and snatched hopes. I am gratified and glad to be an indoor observer mainly. My creativity, my passion to write, my love to read all comes from within and the most beautiful things of this world are already inside my heart. Reclusiveness can come so easy and it is even more easier to continue living within it. It becomes the sanctuary for which your mind cries out for, the one your soul begs for.

I’d rather not have developed Insulin Dependent Type 1 Diabetes nearly 22 years ago now and then Cyclic Vomiting Syndrome Adult Onset happening to me 4 years ago. Factor in the decades of mental health problems and I’d rather not have any of them. It is almost like juggling burning balls of fire where you try to decide each time you catch one if you can stand the intensity of it and for how long, always keeping them rotating in the air. I’d rather not juggle any of these. I’d rather not have chronic severe pain and painsomnia. Dealing with a 12 hour days worth of pain is one thing but then having sleep stolen from you each night because you are in too much agony to drop off is more than awful. I promise you, it’s hell and I’d rather not be going through this hell.

I’d rather not panic and be riddled with anxiety steeped so deep into my very bones that it is nigh on impossible to shift, it just changes its strength. I’d rather not endure numb, flat,low moods that dance between dark thoughts that make me feel so cold. I’d rather not feel any kind of paranoia, insecurity or feelings of utter despair.These feelings “lose you time. Time that you can never get back. Your focus and thoughts are so enveloped in the distress that time just floats past me so quickly. During the daytime, it is relentless, ever-present and highly draining. In the night it freezes. A solid, stuck negative emotion that refuses to change and leaves me in a despairing, frozen limbo of despair. My single, solid comfort being that he even loves me in the dark.

So, after reading this latest blog post, it would appear that my feature quote picture does not really interact of represent the meaning of this particular post. In truth, it could not be more relevant because out of everything, being in his arms, having his love and care is the biggest “I’d Rather” in this universe. He is always there regardless of how many of my “I’d Rathers” …

 

 

 

 

Not That Rabbit Hole …

Change  - Angelou,

I have spent a vast amount of my adult life battling, confronting, denying, engaging and dancing with my nemesis diagnosis of Paranoid Schizophrenia.Most of the time I find myself just stuck. Belligerent thoughts that argue back and forth that are not my own. I can just hear them (voices I mean). They continuously debate and I feel like I have gatecrashed a kind of business conference. The absolute irony being they are the intruders. They clank and collide like parts of a machine that has no power down function. Sometimes I feel that I am living a waking dream or a flashback of an event or conversation that is playing on the stage in my brain delivering a repeat performance and of course the encore. De Ja Vue  can be a comical one for me as it happens twice! So, back to the conference – I attempt to tune them out and on the rare occasions  where I am successful they then resemble a monotonous droning like the sound of a quiet background television minus that habitual comfort.

Having a diminutive element of control over the voices, music, names and yes, even crying, enables me to concentrate my efforts on my crippling anxiety that takes many forms and even proposes to take on a “Chameleon” anxiety as I like to call it. Social anxiety I “conquered” merely by just becoming a recluse. It was the easiest thing to do and eliminated somewhat all of my fears of the world right outside my front door. So a recluse I became apart from disguised and incognito midnight runs to the all night stores. Hooded tops and sunglasses became my actual crutches. Nobody knew who I was and I didn’t know who anybody was – just the way it needed to be. My bedroom with its four walls (very comforting) became my sanctuary and I created my own little world, my own little bubble of an environment. My rules, my space, sparkling clean, no germs and nobody could tamper with me, my tea or my medication. Having such transparent control like this kept me focused and kept me running each day despite it’s damaging connotations.

The panic is tougher to confront. Its power is quite overwhelming and at any given moment during an attack I feel as if I am facing death constantly or being informed inside my head that I deserve death and it was always coming to get me anyway. The physical torment of these attacks come in the form of terrible tremors and shakes – a trembling that I just cannot control. My heart pumps so fast with erratic rhythm and I feel as if it would explode out of my chest. Cold sweats that force me to regularly change my clothes up to several times a day and night – usually pyjamas as I hate wearing “normal” clothes as this represents the world outside to me. I am restless beyond belief and my enforced routines in my sanctuary cause me to never be able to sit or lay still. I get in and out of my bed hundreds of times over and over to do some little thing or to write something down that suddenly causes a literary urge in my head. I may re-light a candle, put on an incense stick that would be appropriate for my state of mood, re-arrange my precious books on the case or paperwork folders. I write endless lists which are my nemesis and yet I cannot help it. I even start labelling things, putting up post its and panic that my clothes, linen and bedding are not folded and rolled properly. I will chain smoke, nail bite to the point of bleeding and display what can only be described as OCD traits. It is sheer panic sometimes and I just cannot rest. I am tormented with this and cannot even sit still through a TV show or a movie. My mind will just not allow it. To say this is difficult to overcome such things and panic attacks is an understatement. Most of the time I feel like I have cheated death several times a day and that there is somebody divine taking pity on me from above.

My constant companion is paranoia and if I really consider all aspects of this mental illness I would be forced to say this is the very darkest and worst one of all to handle. Paranoia is relentless and unforgiving. It does not stop to take a break and it seeps into every corner and single detail of my life. It will find a way no matter what. Just when I believe I have a grip on the day and might be able to make it through it appears constantly to greet me or perhaps remind me. I forever feel I am being watched and looking over my shoulder, listening for any words people may say about me. Why am I so special? What is it about me that this seems to happen? I sometimes write everything I do down in several diaries and journals each day so I can remember events, conversations and details so nobody can “catch me out”. I am plagued with miserable thoughts of what people may think of me, what they may say about me and how they actually feel about me. It all feels like some huge personal conspiracy and they are all in it together to eventually “get me”. Sometimes, I feel like it is only a matter of time before I am mobbed with some kind of intervention for doing something that I have no recollection of but it will be terrifyingly bad. My own thoughts feel like they are being chronically “stolen” and broadcast elsewhere so I am never quite sure what I have said or done. I do not know if the paranoia preys on my bad memory and the fact that I seem to have little control over my mind. Often my mobile phone and the mail scares me a lot. Yes, that’s right, I can be frightened of a letter being posted into my mailbox. I never know what it might contain and with the phone I can become frozen and find it extremely difficult to be who I want to be (myself) and talk to people, even loved ones, family and close friends. Remote controls and electronic devices also cause me distress. This often causes me to retreat into a catatonic state. I become numb, flat, frozen and blank. It is maybe a coping mechanism for the extreme fear and abject torture of it all. The only single person I find solace and safety with is my boyfriend with all of this. He is beginning to understand more about me and this debilitating condition. He witnesses my despair, silent rage, frustration, pain and the criticism and misunderstanding that comes my way. In my world I am more than blessed to have him in my life and heart. The alternative without the incredibly special man that he is would be complete and total reclusiveness and loneliness for life. I am so lucky he can somehow see the “real” me.

Hallucinations are another thing altogether. For me, the word hallucination just doesn’t seem right when describing what I see. They are not visions to me they are just a very normal part of my life now. I have never seen anything completely clearly, fully or front on ahead of me. They are always out of the corner of my eye or if they do appear front on then they are always moving fairly quickly or running across my field of vision – blurry and fast. I see people and animals. The people are always mostly the same but the animals vary. They always let me know when they are coming. After a dry taste in my mouth I then get a warm feeling come over me but it is not comforting in any way. They are not always visual. I receive, I suppose, audio hallucinations too. Various parts of music that will play awfully loudly. I hear names and conversations and other unidentifiable sounds. Over the years I have learned to accept and ignore these to a degree and I have become adept in recognizing what perhaps is “real” and what just tortures me from somewhere else. I have engaged with my visions in the past verbally but it was not a pretty experience and I have found that I am much better off ignoring them and carrying on like they are not there. Some days this is easier than others. I rarely talk about this aspect of my Schizophrenia as I am often met with mockery, disbelief and criticism. I cannot stand to be misunderstood and judged in this way through ignorant eyes, ears and opinions. I surrender, once again, to silent reclusiveness and silence as it offers me relief from the pressures of this world and the attitudes of some people towards somebody like me with this condition.

Night times are mainly exposed as the most formidable for me. There is the multiple medication regimes to be upheld and recorded. I have painsomnia and hardly sleep during dark, night hours. If I do it is broken and laced with night terrors. I have regular physical symptoms – Shakes, Tremors, Erratic Heartbeats, Hot & Cold Sweats, Pain and Restless Leg Syndrome. They are just from Schizophrenia – let alone my other physical symptoms from my Cyclic Vomiting Syndrome and Diabetes (Other blog posts for other days). I despise the nights. The witching hour of 3am arrives and knows all my secrets. I shrink away in terror under blankets and pillows, mainly on the floor somewhere. I pray, no, I beg most nights that I can fall asleep before it arrives. However, it rarely happens and I am forced to confront those things that come tumbling out of my Pandora’s box after I worked so hard to place those most painful things away. I really must get that lock fixed ….

 

 

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Not Beyond Repair …

Breakable
You’re Not As Breakable As You Think

 

For the past week I have been eating a bland diet of pancakes with Earl Grey and wearing daily fresh pajamas like the chronic uniform of a veteran who should be enjoying the retirement profit of their labourious days of historic hard slog at the grindstone. Instead I’m a fresh faced 36 year old woman (although I use the term with some disdain, I’m still a girl!) who yet again has conquered another wretched and gruelling seven day CVS boot camp … It’s a fairly “normal” situation for my chronic life as it stands, although still manages to cause head scratching amongst those around me who pretend to know the depths of living with incurable illness but who really just wonder why the hell I’m not dressed …

Conquered. Hmm .. I’m not sure if that is the right term to illustrate my small but significant sense of victory at this moment. I’m certainly no Field Marshall and I have no army to command but what I do have is a deep seated and innate sense of fighting spirit which, of recent times, feels boosted with the absolute and unending power of amour. Yes, yes, I know – the cliche of love and the fresh, honeymoon ambitions it brings is boring to hear about, but hear about it you’re going to! How can I not mention love when it is love that is keeping me alive right now? How can I not mention love when were it not for its intense promise of future hope I would be locked up (again) in a psychiatric ward drawing butterflies on the wall? How can I not mention the fact that my will, spirit and drive to fight my way through my mornings of pain so severe have increased tenfold? If there were some sort of cure, tonic or divine intervention then he is it and I really do not care for any divided opinion on the matter. As my mother always said to me , when you know you know.

So, as has gone before and shall come to pass again there is light at the end of this tunnel but now it’s shine commands more brilliance and I am drawn to recovery with a motivation blazing inside like never before. In this bruised and shattered body now lies a stoic, cool and self-controlled perserverance to make the most of my chronic days matter and last and make sense rather than to drown so effortlessly in a mirage of medication side effects and sedatives because I just don’t want to feel a damn thing ever again. Those days are now becoming few and far between and who I am supposed to thank for that? The gratitude extends to myself of course, I’m the one battling this monster but my fiercely loyal gratefulness goes to him, for loving me the way that he does. For accepting the dark and painful truths about me that have no chance of ever changing, for seeing in me the brighter sparks of potential that are often masked by this chronic demon and mainly for understanding me. That last one is the priceless one, the one that cannot be found by looking, cannot be bought in any store for any price, cannot be begged for, asked for or demanded. That one just has to happen, all by itself and when it does you feel euphorically freed from a sentence of loneliness, sadness and despair. It’s the key to the castle and that fresh air you never breathed in before. It’s the song on the radio you love but didn’t request, it’s the stranger’s smile on the street that came at the right time and it makes every damn second of living with these chronic diseases worth it.

I am damaged, worn out and there are some huge fragments of me that are irreparable but the parts of me that remain wounded but not yet dead are left in wonder, hope and anticipation that I can become more than my illnesses. I can become what that once unbroken little girl always dreamed of and I can repair the parts of my soul that had wandered lost and tempt them to come back home. The very essence of what makes me who I am is not beyond repair …

Just Ours …

Ever Thine

 

Unending Love

I seem to have loved you in numberless forms, numberless times…
In life after life, in age after age, forever.
My spellbound heart has made and remade the necklace of songs,
That you take as a gift, wear round your neck in your many forms,
In life after life, in age after age, forever.

Whenever I hear old chronicles of love, its age-old pain,
Its ancient tale of being apart or together.
As I stare on and on into the past, in the end you emerge,
Clad in the light of a pole-star piercing the darkness of time:
You become an image of what is remembered forever.

You and I have floated here on the stream that brings from the fount.
At the heart of time, love of one for another.
We have played along side millions of lovers, shared in the same
Shy sweetness of meeting, the same distressful tears of farewell-
Old love but in shapes that renew and renew forever.

Today it is heaped at your feet, it has found its end in you
The love of all man’s days both past and forever:
Universal joy, universal sorrow, universal life.
The memories of all loves merging with this one love of ours –
And the songs of every poet past and forever.

  • Rabindranath Tagore (1861 – 1941

 

Temporary Trauma Vs The Real Deal …

Done In Love
#Love

 

Basking in the delights of such recent happiness I could be forgiven in being remiss with regards to my chronic and crippling conditions that plague each aspect of each day. But not to be outdone they made sure to remind me of the power they wield in the early hours of this morning. I awoke at 6.30am to a torrent of nausea and febrile pain that nobody – and I really do mean nobody – should ever have to endure. It is at times like those that I contemplate wishing I had not been given another divine opportunity to face another day but I am aware that such morbid thoughts are merely just thoughts. I don’t mean them I just think them and anyone who knows one iota of what it really is like to live with chronic pain would shake my hand in agreement. My tolerance is mighty and my patience even more so but even I, the stalwart and seemingly fearless “patient”, want to give up sometimes.Before, in my life prior to being in love, quitting was an hourly affair masked by my pretty makeup and dirty laugh, now I have everything to live for, play for and fight for.

That’s the thing about being in love. Nothing could ever appear to you again as it has before and it’s headily intoxicating. I don’t have to even think about smiling now I just do it. I can listen to music without the ever present voices in my head playing tricks because my thoughts are elsewhere in a waking daydream of hedonistic musings : We’re on the beach and he’s sleeping whilst I’m reading, we’re at the symphony and his expression makes me weak at the knees, we’re drinking cocktails and he holds my hand …  My life is already happening somewhere else and I just cannot wait to catch up to it.

So, despite this glitch in the matrix where I find myself laying on my bathroom floor, the agony stepping up and down my spine, my tear stained face swollen and sore and my stomach ripped up like Wolverine had a go I know it’s all temporary. I know it will go away at some point. I know it will have an ending and whilst in the midst of such despair I know how much I love him because I want to go on. I need to go on because we have so much days of living to anticipate and he deserves the best of me and the best of what I can give him.

CVS and chronic pain are merciless monsters. They warrant my complete and most serious attention, they accept no excuse and demand every inch of my strength, tolerance and spirit. But my heart? They don’t stand a chance. It will remain to them the Holy Grail because there is only room for one in my heart and he takes up every last square inch …

Thoughts for today :

* 83 days

 

 

 

 

 

 

 

 

 

Love. That stuff’s everywhere …

All I Need

 

Just when I thought that I had been sentenced to a solo future without love and companionship I suddenly find myself in a swirling vortex of new and exciting feelings that I may not be alone for much longer. A guy has come into my life but not just any guy and I’m only using the word “guy” to spare his blushes and maintain his anonymity. He’s actually a God send, fighting his own personal battle and yet finding the time to give me a piece of his heart.

Having CVS, Diabetes and Schizophrenia are life imprisonment terms that require constant adjustment, sacrifices and generous understanding from those who are close to us. Expecting somebody to take this on in a partner is a huge undertaking, not one to be considered lightly and would test the metal of anybody and yet he is taking me for who I am. I am not defined by these illnesses. Those are not who I really am or what is in my heart and soul. My expressions, my dreams and aspirations and my creative needs are the real reflections of the person I am. CVS had systematically stripped me of my life and for the past two years my focus has been completely on physical pain and nausea, weight loss, being unable to work, spending a ridiculous amount of time bedridden and indoors, coping with the financial loss of two jobs and the saddening realization that people whom I imagined to be my friends really were not.

Yet now I am awakened to a higher perspective about this painfully beautiful journey called life. The things that I used to cling to for misguided comfort, the materialistic objects that I thought made me happy, the head first charging into decisions I believed were good for me : All of this I have come to discover means very little, lacking in substance, meaning and purpose. Rock bottom is now the foundation upon which I want to rebuild my new life and the empty cavernous voids that remain I will endeavour to fill with much magical and wonderful fulfilled dreams, as I deserve, As anyone battling chronic illness deserves.

There is a quiet peace surrounding me with day dreams of reciprocated  real love that will soon transpire into real life, into my life.

It’s time to be really happy.