Firsts

Today is my birthday, the first one after S' death in late August last year.

Two weeks ago it was the day S was born, first time truly sunk in the fact I will never see his beautiful face again.

Yes, I've had a first Christmas without him but I was in hospital & in denial too.

Today is my birthday and I am in hospital, not in denial anymore, I am here because during the last round of tests in Sydney a couple of weeks ago, a little "complex cyst" in my R kidney was found, there's a big chance it is malignant. There's a benign tumour in my L kidney - just to balance things out I guess.

Brain & Spine MRI results ruled out any growths, tumours or mechanical problems, and MS has pretty much been discounted, albeit some changes in the white matter, which may or may not, be attributed to age. One would be forgiven for thinking that it's all good news, right? - well, "Not really" said Professor H (my neurologist), now we are staring at the scary stuff right in the face, more tests were done, no results yet, just a lingering sentence in the air: MND is a diagnosis of exclusion...

The grief of losing Simon plus the new discoveries are taking their toll on me, I can't eat, I have terrible nausea, zero appetite and swallowing has become a task in and of itself. My balance is crap, I've had a couple of falls, the tremor is intense and my brain is forgetting words, I either can't say what I want to say or I jumble up words or I can't understand when people talk to me.

You may think I'm crazy (after all, I am in a psychiatric facility), but Cancer doesn't scare me at all, if I have renal cancer it will be OK, it has a survival rate 80-90%. So no biggie. It most likely will be uncomfortable but meh.

Death doesn't scare me, in fact, I've been wishing to die for the longest time, the only thing that's keeping me here at the moment is securing as much money as I can to set up a trust fund for S' son.

What truly scares me is losing control of my body, being sound of mind but unable to move, I could not bear a life where I cannot feed or dress myself, being trapped in my own body and dying of respiratory failure, not because my lungs are diseased but because the muscles of my rib cage will stop working.

I cannot find a more cruel way to die.

If I'm positive for MND my decision is to die in my own terms & much before I cannot do it unassisted, I don't want anyone to be in trouble because of my determination. My life is my own and I shall decide when and how it ends. I am not one of those most excellent people who fight and continue despite the worse, I am not going to run a marathon, nor start a foundation, I am not going to write a book and be the inspirational-porn poster girl. I am just plain going to die in a dignified way and whomever disagrees with me can go eat shit.

My life, my way, right until the end.

Comings & Goings

It has been such a long interlude between posts. Things have changed and in a way kind of stayed the same. 

I spent two weeks in hospital at the end of Feb, the idea was for me to change meds, my antidepressant was swapped for a different drug, washing out the previous one was horrible, withdrawals are so bad, I was feeling sick beyond the pale, and on top of that, my lovely nervous system decided to start shitting itself, I started having trouble walking, my left leg refuses to move sometimes so, I now have a walking stick. 

I also started Grief Counselling Therapy to help me deal with the enormity of my loss, it is strange to be a widow at my age. I miss my love so very much, I wish I could just wake up and it would be 2 weeks before I left to go to Syd, I wish I'd had made the decision not to go & I would have been there when my darling got his dreams shattered by a fucking bureaucrat. But that is never going to happen and my heart breaks afresh all over again. 

I've been back and forth since March, and about to go again to get more tests, see more doctors, find less alternatives, get more frustrated at myself, why can my condition not be just easy to diagnose? 

The pain is getting steadily worse, the neurologist thinks I am so very interesting, the ophthalmologist says I'm fascinating, the rheumatologist is confused, and the latest discovery is that I have a renal tumour. 

I'm tired, I want to give up, I need to rest. I miss Simon every living minute, I wish I could die and be with him. 

Last week I went to see the place where he died, the Constable who attended the scene drove me there, it was so surreal, I had already been to the exact spot, without knowing, I had found Simon, I found his tree but I didn't know it at the time. It made me feel connected to the place, it's hard to explain the connection we had but I could feel him, that's why I knew he was gone, I could not feel his presence anymore. I offered the tree salt and water, and I thanked the tree for keeping Sim's spirit, He chose a magnificently beautiful spot. The swamp is where his spirit lives and the tree is the guardian of his soul. I felt envy because now nature keeps him. I'm at peace but I'm heartbroken. 

Changes

I've moved homes, yes again! I was hardly for 1month in the last house but I hated it and it made me feel worse than ever about my situation. 

The place was a shit-hole, in such a state of disrepair and neglect it's amazing the real estate can get away with leasing it at such a high price (for the area), it's unbelievable it can be leased at all. 

Everything was broken down and when I asked for urgent repairs I got told by the agent "I know it's not working/broken/falling down (etc) but the owner chooses not to fix it'. When I asked why would the owner let his investment get so poorly managed they answered "it's a old house y'know" I was seriously perplexed by their non chalant disregard for their job. 

Anyhow, on 16/2 there was a downpour of rain so heavy the blocked gutters overflowed (naturally) and the water found a way through the roof into the kitchen and some of my possessions got drenched, amongst them a few electrical appliances (which don't work any more after getting wet). I went to report the damage to their office the next morning and they said they knew there have been substantial damage because another neighbour had come earlier to complain, good old Trev was summarily dismissed just the way I was by being told they were sending "someone to have a look". Nobody ever came. 

I went to see the GP and Dr R saw straight through me, he didn't let me go home, I got taken to Macksville hospital and from there transferred by ambulance to the Base Hospital at CH where I got scheduled under the MH Act (2007) for being assessed as a danger to myself and/or my reputation (all the fucks). I was stripped of all possessions including my mobile phone and 2 security guards were sitting out the door of the room I was allocated to wait in until a bed was available for me. At about 2am was finally taken to the psychiatric ward where I got informed of my involuntary admission, I told them I had gone there voluntarily and had no plans of absconding but they said the Emergency Dr decided I had to be kept against my will, that didn't help make me feel any better obviously. 

That particular unit is quite large, it holds 38 patients and the majority are psychotic, it's a very noisy ward and not particularly suited for a depressed person. I wasn't allowed out, had no "permission" to use my mobile phone, could make 2 calls a day from their phone but they monitor the conversation and eventhough it is a hospital they had trouble sourcing some of my meds so I missed a large number of doses of my pain relief, to say that was a traumatic admission is to put it very lightly. 

After a couple of talks and some negotiating I managed to get my status changed from involuntary to voluntary, that tiny suffix carries huge implications regarding your treatment i.e. you may be forced to take certain treatment because the dr has decided it's in your best interest and you are not consulted about it, they can keep you for weeks before you are taken to a hearing and then a Magistrate decides if you should stay longer, be forced into more treatment, etc, so it was imperative for me to be in control of the situation, once you're voluntary you may request to be discharged, which I did after a week of being in that hell hole. 

Because of my chronic pain I take a lot of pills bot in quantities and kinds but I only take 2 S8s (opiates) one regularly and one as needed for break through pain, the bulk of what I take is made of paracetamol, gabapentin (an amino acid), and 2 antidepressants but a nurse told me one night when the pain was particularly severe, she thought "it is disgusting the amount of drugs you take, you're just a drug addict and I'm not about to give you any more, it's disgusting, no wonder you're in here, you've done the damage to your brain with all those drugs..." I told her it wasn't her job to judge me and shuffled away to my room, that made me decide to ask to be discharged the next day, I didn't even have clothes other than what I was wearing, the social worker found me some clothes in the left property box so I could at least wash my own, I bought a pair of undies from the "Pink Ladies" a volunteer group in the hospital. I managed to get in contact with D my support case manager and he had the undignified task of going to my house and packing a bag w the necessities for my stay, I was mortified he had to go throug my underwear drawers and get a few changes of clothing for me. There are only 1hr visit after lunch and 2hr after dinner so the place is so restrictive its environment is not conducive to healing, I  told the dr that place was making me worse. I felt like a prisoner,for the first time I felt like I was being punished for being depressed as if it was a capital

offence, what bullshit!

We were waiting for a bed to be available at the private clinic and the dr and I were mislead into thinking I would be transferred but then the dr was told my treating psychiatrist in there didn't want to accept my case, and I was told they were full and my name had never been on the waiting list. So I went home. 

On the next Tuesday I went to the pain clinic as I was doing regularly but after signing in I got called aside by the manger who told me my pain Dr said I could not do the program anymore until my mood disorder was treated so could I please leave. 

I felt so sad, disappointed and let down I just said ok, I'll get my bag and go, I was extremely upset. I didn't understand, I couldn't get a bed in the psychiatric unit because whatever and now I was denied access to physical rehab for the pain, to say I was confused it's an understatement. 

I marched in straight into my psychiatrist's rooms and spoke to G the receptionist who was absolutely lovely, I explained the situation and right away she said dr P wasn't in that day but she would ring him, to my surprise he took the call and I was told he would contact dr Ch to at least get me back on the phys rehab program, then after some more talking the receptionist hung up and told me dr P wanted me to see the clinic's unit manager so I was escorted by G into the clinic to an icy reception, the acting unit manager refused to see me but she sent a nurse with an appalling manner to speak to me and do a triage, after speaking to sister A (who kept telling me they were full) I got asked to sit and wait in the dining room, I decided to leave after 45min of being ignored, I had other things to do that day. I went away, caught a bus and went to put a claim for refund of rental bond to the fair trading office, because the bond was in both S' and my names I had to produce his death certificate and naturally the lovely lady helping me was asking me how he died, but when she read the line which states the cause of death she got teary and I just lost it and became a sobbing heap of tears. They were helpful but revisiting the details of my grief was too much for me to bear. 

I decided that this would be the last time I asked for help, I've had had enough, then I got a call from the sour acting unit manager saying dr P wanted me admitted the next day by 11am, miraculously there was a bed available for me...

The day before I had a call from Housing offering me to have a look at a place in down town C.H. I went to get the keys and checked it out, at once I knew I had to get this place, great location, very well maintained and most importantly, affordable, so I said yes to the offer and thanks to the wonderful kindness of D, his colleague S, my friends M & H from Vinnies who packed all my stuff in one day, I moved not only houses but towns, all whilst being in hospital. 

The hardest thing for me was to surrender and let go, I needed to be in hospital and I needed to pack so I graciously and gratefully accepted my friends help and it all got done in 2 days for packing and 2 weeks for the moving of boxes by loads, the furniture was moved by Mick the same chap who helped me the last time, he is a fair, honest & good working man, and now I am writing this from my new house which makes me feel hopeful for the first time in a long, long time. 

I shall write about the actual admission on my next post but for now I'm just going to enjoy my new home. 

Rain

I've moved house. 

It was done in a record time of 1 week. I managed to do most of the packing by myself but did get a bit of help from T, M & P. 

P was with me that final day when I handed the keys back. It was a sad ordeal for both of us. For me as the widow, for P as the grieving mother. I asked her to take me to the beach and there we stood sobbing for a while. 

I'm trying to adapt to the new place, different sounds, especially at night. I haven't finished unpacking yet, there is a part of me that thinks it's pointless, if I'm gonna die why unpack? 

Yes, I keep thinking about suicide all the time. Dr said I should go back to hospital but what for? Last time I was admitted I was given the impression I was an annoyance even if I was paying exorbitant amounts of money to be there (the insurance was really).

If I go to hospital I have to adjust to the new place again after discharge so why not just stay home and try to manage by myself?

Money is a huge stress, I have only just enough to pay rent and bills, for the first time in my adult life I have to choose between medication or food, health expenses or recreation. Everything revolves around me being unwell, now I have to check I have my meds with me before I go out, need to make sure I don't miss a dose, I need to rest all the time after I do even the simplest of things, I have no energy and feel exhausted to the point where breathing is an effort. I hate what I have become. 

I've applied to get extra help w my rent but so far it is not going anywhere. This sucks! After paying rent & bills I get $100 left to pay for food, transport, and medications for the next fortnight, any extras are not an option. I cannot afford any emergencies. I had always been so proud of being able to manage ok even with the little money I get but now the situation has got to a point where I prefer to sleep rather than having to confront reality, big problem: I am a severe insomniac. 

Getting a job would be great but I'm so fucking unwell I am not allowed to work, and in all fairness, I'm a very unreliable worker at the moment because of my illness. 

I'm doing all I can to get better but I'm getting nowhere closer to even knowing what's wrong, let alone fixing it. I don't even think I'm making any sense. 

Every day is more painful than the previous one, my heart is so heavy with grief. I miss my darling so much, I just want to be with him, I want to hold him and hear his voice and kiss his hands but that is never going to happen. 

And that breaks my heart all over again. 

Life, of sorts

I'm snowed under a mountain of paper work. Now I am to fill forms to claim S' superannuation Death Benefit Payout. 

It is a shit load of money, true, I need it and it may solve some problems for me. 

However, I'm claiming it to give it to his son when the kid (he was never allowed  to even speak to, let alone see) comes of age.

When S died he didn't know he left a Will and he certainly didn't know about the possibility of such a big payout. On his final letter he left everything to me to do as I saw fit. 

The Will was drafted many years before we met, he had forgotten because of all the ECT he had had fried his brain, his memory was terrible, he couldn't recall many parts of his life and the short term memory was appalling, I always had to check he turned the cooker off, many burnt pots & pans and smoke alarms triggered when I wasn't around. 

The Will is a legal document, the final letter isn't. There is a strong chance the money will go to The Mother of the Kid, that would be an insult to S' memory, she was horrible to him, and although the kid would benefit from that money still, I don't want her to have it. 

I want to get as much as I can and put it on a trust fund and when the kid is old enough He can learn his father loved him, he wanted to be part of his life, he sent him presents every bday and Xmas, he provided for him, I want the kid to know what a wonderful, gentle, caring, generous and loving his dad was. He never abandoned him. 

As for me, well, I don't know how much longer I will be around but I am fighting for what is right. That's my motivation for the time being. 

I'm utterly broken with grief, my health is deteriorating to a pace I had no idea it was possible but I'm doing all I can, I'm doing my best. 

Today

Warning - very honest and explicit talk of suicide.

I don't know which stupid stage of grief I have reached now, I think I am experiencing all of them at once and not in any particular nor defined order, denial is probably the only one is over.
I knew he was going to do it.
I knew he was going to kill himself, and the way in which he chose to do it. I was just not expecting it at that particular time. I suspected nothing that afternoon when we exchanged text messages. I feel stupid because his last message was "I will be OK. X" and I didn't understand his meaning. 
Do I feel responsible?  -  No
Do I feel guilty? - Maybe, although I know it is not my fault and I could have done nothing to prevent him from ultimately killing himself at some point, perhaps I could have stopped him that particular night. He had made up his mind and he was ready to go. But I knew, I knew, and yet I could do nothing about it.
That is why I believe he didn't reach out, because he knew I would talk him out of it for that day but then what?
Writing these words is so incredibly painful, I'm in tears, sobbing, howling, hyperventilating, having to stop constantly to wipe my eyes, walk around the room in circles, and as Edenland put it, as if going through labour, grief labour.

Everything hurts, nothing makes sense.
Simon was such a lovely man, sweet, intelligent, talented, handsome, wonderful but he could not see it. He couldn't feel comfortable in his own skin for a long time, it was not only depression and anxiety issues, it was also the chronic pain for which he never got proper diagnosis nor adequate treatment, he was tormented by not being able to see his son, he saw himself as a failure for not having all those things society uses as markers of success for "real men" i.e. having a massive mortgage for a house, owning a house, having stable employment, having a family, being always healthy and naturally not having a mental health problem. What bullshit!
He always felt as if his family resented him for being ill, I always thought that was just his perception but recently I heard one member of his family say it was a relief they didn't have to worry about him anymore - oh great fuck! I wanted to die when I heard that, perhaps it wasn't meant to sound so fucking horrible but it does suck to know that is the way they feel.
They didn't even buy an urn to keep his remains, he is still in that horrible 'standard issue' plastic box from the Health Authority. I know they are being practical because we will scatter his ashes in the sea very soon but for fuck's sake, they could have at least got him a cheap wooden box, something a little more dignified, he deserved better.

This grief is so deep, this pain is too much.

The past 2 weeks I've been away for medical appointments, on top of the devastating loss and the possibility of me becoming homeless, now I have to deal with the fact I may have a brain tumour, and just to make things just that little bit more shit, the pain specialist I just saw thinks my pain is not a rheumatological issue but a neurological condition, she is having me see a neurologist and entertaining the chance of MND (Motor Neuron Disease), MS, or some other neuro-degenerative illness.
Fuck, I've hit the fucking jackpot!
It is great to finally find a Dr who is not treating me like a fucking nutcase but fuck me, can I not just have a little bit of good luck for once?

I am sad and angry and broken and confused and scared and lonely and fucking pissed off and disappointed by life, I feel let down and abandoned and hard done by. I am forlorn, devastated, desolate, bereft.

I miss him, my body misses him, I am angry at my body for continuing to function, I am getting all this pent up sexual energy and I cannot even masturbate because it makes me cry, it feels like cheating on him, but he is gone, dead, never coming back!

Why, why, why? I walk around in circles most of the night howling, asking why, talking to him, to god, to anyone and no one, it's all the same, there's no answer, only silence and my sobs and this endless pain.

There are all these images that pass through my head, disturbing images, perhaps too morbid for some but I keep seeing them. I see him being very upset, getting in the car and driving to the bush (to the place he told me he had found but never told me where it was), drinking too much, crying, fighting with the world, climbing that tree, sitting on the chosen branch for a while and very meticulously and in a quasi reverential way slipping the noose on his beautiful neck, arguing with himself a lot more, justifying his decision and finally jumping off the tree. Only 3 minutes to die. I hope he was unconscious after minute 1. The saddest part is what comes next, he is there, alone, exposed to the animals and the elements for a week, no one was there to hold him and take him down sooner. I was not allowed to see his body, I know exactly what he was wearing. I hope he had a second to think of me and how much I loved him. I hope he felt loved by me to his last moment.

I know he had been practicing and perfecting the technique for years, there was nothing I could have done! and yet I wish things were different, I wish I could have been there to tell him I love him so much. I wish I could have done something.

There will always be a gap in my heart now. I really want to be with him.

Back home

After four long, lonely, strange and tedious weeks in hospital I'm back home for a few days before heading to the big smoke for specialists appointments. 

I had some very bad encounters with my treating Psych who dared to tell me I was only Sim's carer and our relationship had no future, I refuted her assumption and she said 'oh ok. Maybe I was wrong' - Maybe???? Fucking hell yes you were wrong madam! 

When I made a complaint about this to the nursing staff she denied 'ever saying anything about her partner' and that resulted in needing to have a nurse chaperoning every single consult we had after that, which suited me fine as it meant she wasn't purposely cruel to me anymore. She also told the nurses if I told them again I wasn't feeling safe she would organise for me to be scheduled in the public hospital - thank goodness Sister R told me this in time, so for the last 2 weeks I had to muster all my energy in pretending to be ok, I did it so well a lot of visitors thought I was working there and never would have picked me for a patient. 

I will never see that horrible psych again, even if I need another admission there I will ask for a different dr, simply because I don't trust her and without trust there cannot be a therapeutic relationship. 

Why do specialists have such a big problem when another human talks to them as their equal?

She really is stuck in a power trip. Good luck to her patients. Worse part is, I wasn't the only patient being treated poorly by her, 2 other ladies had equally bad experiences with her and the nurses knew it so they were supportive of me but there wasn't much they could do but listen to my grievances and try to come up with solutions that could work out for me without jeopardising their jobs. I shall forever be grateful to them. 

For the first time my chronic pain got addressed, I got referred to a pain specialist and will be starting a pain management program in a few weeks. I have a new approach to treating the pain and even if the reason for my admission was the chronic insomnia (which wasn't resolved), I still gained the chance to try something new to lessen the pain.

It was very sad to hear the Pain Dr tell me the pain will never go away, it cannot be cured and it will progressively get worse and it will be disabling to the point I won't be able to be independent. I was really hoping against all hope that she could say 'yes, we can cure it' but I guess is better to know where I stand, at least now I'm getting better help managing it. 

Weird side effects to gabapentin I developed: severe stuttering, expressive aphasia, urinary hesitancy, urinary frequency&urgency, haematuria, pharyngitis, increased tremor and last but not least tonic seizures and muscle fasciculations. Oh and my affect is flat. I know rationally what emotions I would be feeling but I cannot actually feel anything, I'm so very numb and detached. 

Strange to hear people's commenting on me 'looking so much better' I guess it's easier and less uncomfortable for them to see me faking a smile than to see me crying and utterly miserable out of the sorrow and grief of losing my beloved Simon. 

Being back home has been ok but it has reopened the doors to the grief, sorrow, pain, loneliness, good&bad memories, longing for him, missing him terribly it actually hurts physically. 

I feel very hurt also by his family, they don't contact me anymore, they don't need me now that he is gone, that makes me very sad. They said I had their help & support for as long as I needed it but I got told 2 weeks ago I have until February, then their help will end. I'm grateful for all they've helped and I never expected them to help really, they had no obligation. They never saw me as Simon's partner, they only saw me as his friend and his carer. 

They know nothing of the love we shared, I guess it's not important to them anymore. Perhaps I'm a painful remainder of Simon's death to them now. I don't know, I cannot read their minds. 

Just an acknowledgement of our relationship would be nice. For me. 

Fuck the money. I want nothing but to be with him and that is the very thing I will never have again. 

Everyone keeps saying 'do things in your own time, only when you're ready' but at the same time I'm being given a deadline by his family, & by the landlord, I will have to move out of our home soon but haven't been given a specific date, so, in reality I don't have much time and I know I'm not ready but I guess that's my problem and mine alone. 

Don't say things you don't mean. 

In the end I know the truth, he loved me and I love him forever, no matter what. He was my comfort, my friend, my perfect lover and I was his and by his side until the end and I'm certain he knew how much I loved him. 

Fuck the rest. They can sing high mass if they like. 

They had him during his happy times but HE HAD ME DURING THE BAD TIMES AND I WAS HIS UNTIL THE END. 

I love you Simon. May you rest in peace.