Monday Night Reflection: Nothing To See Here

It is difficult to reflect on a week, where, to my mind, very little of what happened is Mouse related. Mr Mouse, it would appear has not been busy. Where Mr Mouse was once busy sorting out and tidying around making sense of my world and doing a great job in the background of getting things done for me there is now space. Worse, a slightly sticky space bar is hindering my efforts, which is perhaps the problem.

At the moment all my sense are turned way up, sounds hurt, touches, tastes, they all cause physical pain at very low intensities, on a certain level, I am guessing this is what autism must feel like because input, is generally, not a pleasant thing. And life is all about input, sleep isn’t restful and tired, sick, nausea and generally feeling in pain in some way is what it’s all about. Creatively everything is dry, projects are dry, work is gone, nothing to do, no inclination to do it, and recovery has hit a wall with even physical progress coming and going. It has been another tough week after a tough week. So while the stats people could say the trend on the graph is positive, it is positive trend on trend, its a very slow trend and the negatives are big, the downs are big, the relapses are huge and the experience is anything but what someone would call fun.

It would be accurate to say, at least some, if not some large chunks of the time, I have started to feel more than just a little sorry for myself. Because, I am not going anywhere or getting anything done, and if I am making a little progress, one I can’t share it and two it is only back to a level far below the level I was at anyway before all of this started back in March. Imagine playing in an orchestra and then having to back and start grade levels, that is the equivalent. At the same time, the physical pain is intense and debilitating, my mind is working at a physically tiring level, so writing this is the mental equivalent of a workout when once it was easy to write and introspect. In fact, not only was it easy, it was a fun and helpful, now just writing an email to a friend is taxing and difficult as a task.

It is difficult because, I have to recognise that is, really, very early days. I don’t have a cast to see or a wound to see healing, which is a huge part of the problem, it is all happening in my head and inside where no one can see what is going on, and it is messing with my emotional and coping capacities as well as impacting on my personality. The impact is on how I see and feel about myself, there are suicidal thoughts and my self-talk is very negative, you could say I am depressed, but at the same time, I am not depressed in how I have experienced depression in my life previously. This is a complex awareness that I am two people existing in the same space at the same time failing to cope with the existence of each other. This is the stuff my Mouse used to handle for me, this is what I let my mind sort out in the background my focusing on positive goals and helping others. Those things do not work, I am tired, my concentration has gone and my memory awful, but of course I have not given up. The two, the depths of despair and abandonment alongside hope and optimism are together interwoven bound in single thoughts.

The past is the past, and this has happened, the future I thought I had, it is not the same, and where I had a plan, I do not even have a plan about how to plan anymore. I would say I am fighting, but I am, it feels, more trying to work out who the opponent is, before I start fighting back. So far it seems the opponent is me, or more precisely a me that has started to malfunction and is apparently going to start working again spontaneously. There is no fight, just waiting, which is perhaps, ultimately, why I cannot cope. Previously I have a process, a fight, something to do, and this time, all I can find is, wait and time does the job. Great, if you are on the express train, not so great for those on the slow boat. I think I didn’t get off the harbour here.

The purpose of reflection is to do, and that is where I am coming up blank each and every time, I have no do. So far, it’s do what I can still do, setbacks like getting food poisoning included, and keep looking for new opportunities and avenues to make progress, even if, so far, they have not opened up or become apparent.

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Monday Night Reflection: Not Famous

I have tried to avoid deep introspection and life reassessment, it’s a bit cheesy, but I have been very low, and having discovered that on top of my existing medical journey I picked up a kidney infection (probably in my duplex kidney) I did manage to hit a very low and rather depressed point.

Thing is, I started noticing something, part of what had driven me to change my profession was that people in that field were asking what I had done. When I started it was all about technical ability, proficiency, results and knowledge, and now it is all about how famous you are and how famous the people you work with are. It is a fame game. More and more, I was thinking about contributing and the barrier to entry was how famous are you or how famous are the people you know.

It was last night, sat with my wife and stepson watching Disney Cars, my wife had not seen it and I am excited to see Disney Cars 3 in June, so we sat and were watching it together, he joined us and we had a really great evening and even grabbed a small takeaway tea for ease. It was a great end to what was a really enjoyable weekend. It was getting ready for bed that I had the light bulb moment, because like I do, and many of us do, I had a quick scroll through Instagram and I follow a few “successful” people, and they had worked. They seemed super happy that they had found time to be “productive”.

No knock on them, but that would not have made me happy, the thought of what they had done made me sad. My weekend I had sorted the exhaust on my car with a friend, trained, spoke with a couple of friends, one was a bit overdue and was really nice to catch up too, and watched a lot of MotoGP, spruced up the house as we have been doing for years and probably will be doing for years, and connected friendships. Most of my time was simply,  being, productivity and metrics were the furthest things from my mind, in fact, I remember my son and wife looking at me somewhat aghast as my phone vibrated through the film and I didn’t even flip it over despite having seen the film many times before. Why, I was enjoying the moment of being with them, nothing I do is that critical it can’t wait an hour or two despite what some people thing. And it is Sunday, and it’s a day none of us has to work so I make sure I keep it free to have with those I love.

I don’t want to be famous, and I don’t want that success. Travelling to do this and do that and the lifestyles that the successful have in what I am good at are just not for me. I guess I am good at the wrong things. You can take your adoring crowds, that’s cool, I will wake up to the eyes of the woman who loves me win or lose, succeed or fail, the woman who picked up and held my hand when I couldn’t move it myself, the woman who has seen me at rock bottom, and who chose to sit down next to me and just wait till I was ready.

It is not that I don’t want success, it’s that I won’t drop mine chasing someone else’s dream.

Dear Diary 14th April 2017

I have nothing to say

My voice has gone literally and metaphorically

I am scared to sleep tonight

Scared to say I had a small attack

My mouth is numb and my head is throbbing

I know the signs now, even when they are mild

Staying awake doesn’t change a thing

Sleeping gets it over with

But still I am scared

What if this time is the time I don’t make it back?

Monday Night Reflection: Moving Forward?

This has been a difficult week. I wrote my last reflection sat next to a hospital bed, and here I am back at my desk, that bed does not feel a lifetime ago. Quite the reverse, hospital feels far too close, and I am finding it difficult to impossible to move forward or get away from that medical experience.

I have been blessed by lots of support and genuine concern for my welfare which has really been humbling, and talking to those people and keeping them updated with how I am doing has been a great reminder of the great people I have around me. There was also the complication that I left hospital without a diagnosis or even an explanation of what had been happening, just follow up, which would rule out certain options.

It was frustrating, partly because I had nothing to tell people, partly because I had no treatment and no prospect of treatment, but mostly because Doctors were not listening to me, and not taking what had happened seriously: even to the point I was told “I am not concerned because this is nothing serious”. Now this may be a terrible attempt at being reassuring but when you have been ambulanced in straight to resuscitation twice and your wife was told to prepare herself for you having had a major stroke once, and she has been prepared by the ambulance telephone operator to give you CPR and asked if there is a defibrillator handy it is anything but helpful.

The medical experience has been all of my experience, and even now I have seen a GP and gotten on a treatment for the most likely diagnosis of hemiplegic migraine, and am able to tell people a more positive set of outcomes, it is still difficult to move forward. I still have to be supervised, and my return to a normal life is what an employer would call “a staged return” to normality, which is tremendously difficult.

Everything in life is starting from the beginning, my business project is stopped, my writing projects stopped, everything stopped, my office is a mess, my desk is a mess. More than that my confidence is in pieces, and I am having understandable trouble sleeping, while I am exhausted at very low levels of activity. The road to recovery is a cliché phrase, but it is also a very accurate description of the process. A process I have to take carefully because although we have a great working theory, we have no trigger and no explanation as to why this rare form of migraine has started in my forties rather than the average age of onset of 17. I am rather old for this to have started.

It is really difficult not to over-think and over-analyse every feeling, twinge, and the rather nagging headache that comes and never quite goes. Plus, there is the reality that some symptoms can take a few weeks to wear off, in my case the most obvious one is a stammer that I never used to have. A return to normal is also a little more difficult because at the moment I have a weekly trip to a not local hospital for another issue identified to be treated, and quite a few extra pills that more than likely I will have to take for life now part of my morning routine as a little reminder of my fragility.

I am not taking this as negative, it is great that I have had potentially serious health issues addressed before they got that way, and it is awesome to have a GP who works with me and who steps up when other medical professionals have let me down. I have had lots of scans and test that have revealed I am very healthy internally and have raised things that can be addressed in plenty of time.

None of which has moved me psychologically away from my hospital bed, mentally I am still a patient. Creatively I am literally an empty space, writing about my experience is dull and lifeless, there is nothing there, I cannot create from it, and I feel like my brain isn’t back yet, it’s a lot of locked doors and I have lost the keys. Writing this reflection was a challenge because I only had one subject to write about, and I didn’t want to write about it. The reflective framework suggests that I use the experience to inform future behaviour or practice, and even am able to identify what I could do differently. I cannot see anything I can do differently when I was a passenger taken for a ride by what was happening, sometimes very literally.

As I wrote last week, I cannot bring myself to take the easy route of claiming some epiphany about the wonderful gift of life and how precious I have realised it is after what has happened, the truth is I haven’t had that sort of light-bulb revelation at all. As time as has passed, I have started to see how this three weeks has changed or could change both my wife and me. For her, I see real positives when she realises how awesome she was, not in that terribly overused, found strength she never knew she had way, because I am pretty sure she knew she could be phenomenally strong, a reminder or a revelation of the extent of that strength, I will give you that. No, it’s deeper, she was capable, she made great decisions, and although she was worried beyond my comprehension she managed it, didn’t ignore it suppress it but acted appropriately and constructively through an incredibly difficult and challenging situation. I hope she walks away from this with her confidence in her capabilities raised and her assessment of her abilities and judgement moved up closer to the level where the are and she stops underestimating them a little more.

For me, probably not what people would expect. I realised how close I am to having a perfect life, and that sadly, money is what it is going to take. I have an amazing life, but it is insecure, money will make it secure and add stability and certainty to it. That is not so I can take more risks or necessarily have more material stuff, I have way too much stuff and there really isn’t anything I need, maybe some cool enhancements, but that’s always going to be so. No, it’s a case of making life secure, and so that I can compete and we can have a holiday so that we can go back to having a car each. I’ve realised I need to make my dream less precarious.

What I do not know, where I really do need the epiphany is the how.

Monday Night Reflection: Trying Not To Get Medical

It has been a difficult time; and honestly I am still in a difficult spot. I am sat next to my hospital bed writing on my netbook hoping the rather poor wifi will let me post this. At the same time, I want to reflect in a relevant way about my life, what I have learned, and what is important to me without turning into a rather dull medical saga.

What I am in the middle of is serious. Luckily for me it is not a stroke, and not a TIA either, so my brain hasn’t been damaged by what is happening no less than 4 times a day. Which looks like a stroke, right out the text book. So it scary to be around and its down right terrifying to experience because I am fully conscious and thinking but only able to hear. Before usually slipping unconscious anytime from 5 minutes to an hour after an attack starts.

I am not going to detail the medical stuff, but I’ve been discharged from 2 hospitals being told it’s not a stroke so there is nothing wrong. That is a story that will be told offline in offices with legal people present. Which presents a challenge. Clearly, this has been the majority of my experience coming the day after my Reflection on Logan. 

I could decide to write about an epiphany experience about having my eyes opened to the value and gift of life, but that would be the very worst sort of lie. Deception is not my aim. I already knew that I was a small amount of income away from the perfect dream life, and that that distance was both small and not terribly bothersome. Perfection could wait while I enjoyed the fantastic opportunity I had. My goals have not changed, although I have had some ideas on how to bridge the income gap, they are ideas, and I have made small priority decisions, after all, I have had a lot of time to think. Not being able to move or speak does that. I have evaluated positions I held and decided that there are things I can do differently and opportunities I should not dismiss out of hand.

So I am not radically revamping my blog, I am not changing the direction of my life, in fact, I am more convinced that I am on to a good thing and the goals I have are smart enough to serve me well. My commitment to my craft and project is largely unchanged although I always knew I had to look into my time management as well as being a little more organised so I could get ideas out of my head into a secure parking space quickly and then find them again. Things that I haven’t necessarily made a priority, and I want to use better time management to work on the things I want to be working on, and measure my involvement in fun distractions. 

I will probably get an XBox One too, I always loved Forza and my eldest son plays it as well as other games, so I get a bit of mindless distraction and can get a closer to him (My children from my 1st marriage live with their mother). Which may seem to contradict my commitment to be productive with a weak excuse, but the aim is to do things I enjoy and relax me, and to manage my social media involvement. To date, I have used social media as a distraction and I want to lose that aspect and concentrate on connection and positivity, which is what I love doing.

Which may turn out to the light bulb epiphany moment in my current experience. Making explicit that I love to help others and that having a positive impact is something I find fulfilling and rewarding to the point I chase that drug with all the manic drive of an addict in withdrawal without any conscious acknowledgement that this is the case. And perhaps, even, an element of denial and a desperate maintenance of cynical observation to mask that actually that I care so much that I get hurt and used. 

I don’t want to tell my story just to tell my story, that is pointless. If I tell my story I want it to establish my credentials as someone who was not born extra-ordinary, who has no super-power like talents, and is very much a non-remarkable specimen. If I possess any attributes it would be stubbornness and stupidity. Too stupid to know when I am supposed to be beaten and too stubborn to give up even if I did. A genuinely mixed blessing. However, this is why I want to help others be everything they can be, love life and live a fulfilling life chasing goals, not dreams, goals that make them happy. Growing to be someone they would want to be friends with, want their children to be friends with, and would let their children marry and who they would happily trust to employ and look after all that they hold dear and valuable. 

I am not sure if I am really that person, but the journey to be that person, that’s the stuff of my life and I am convinced is the very best of life. 

As John Connor said, “the future is not set, there is no fate but that we make for ourselves!”

Dear Diary: 20th February 2017

Don’t stroke the Mouse!

Mouse was rushed into hospital last Tuesday with a suspected stroke.

Nearly a week later all we can say for definite is that Thursday night his brain showed no sign of damage.

20 stroke like episodes later Mouse can barely move his left side or speak.

His NHS experience is far from positive but with every reason to be down my brave Mouse is still upbeat and planning new projects for when he finally comes home.

Mrs Mouse

Dear Diary: 1st March 2017

My head hurts, the pain from my obstructed bile duct that Doctor’s could not find is back. I had this cool symptom triad of pain approximately over my pancreas, radiating back to my kidney and a headache. That triad never went completely but things are building.

This is about life boxes, the weekend has left me behind with creativity and my business project. I feel stupid because my Anonymouse blog can’t promote my little venture and my venture can’t direct to my blog without broadcasting to my ex and the problems and issues that would create that I cannot handle. But I want people to see the blog and find it useful to them and I want to share what I create.

Feel like I don’t promote myself out of fear of backlash and there is this great big set of shadows. On the one hand, I have that fear of vicious reprisals and the fact that those near me do have something to lose and she not only knows how but also would because she did once already try and destroy anyone seen as on my team. On another, I have a health issue that has already taken away my hard work and opportunities that I worked for.

Feel hemmed in by threats. While at the same time as my creative project boxes are stalling, my life – life has a car dying, another car breaking, a budget that had a 13k hole in it, 6k owed I never knew about and a £300 a month outgoing that wasn’t in the original budgeting, so my income is super low just as the financial shit hits the fan, and because of my health, which is really crappy, I can’t just take a crappy job to bring in money because I could wake up or even take sick. I have actually collapsed a few times in the last 6 months, probably should have let myself be taken to hospital but I refused.

That is all becoming more than I can cope with in a big way. At the same time, there is all that opportunity which feels like it is slipping away because I just cannot get to take advantage of it through being ill, through dealing with minor life issues like I need to. It’s all being wasted for me as well as by me being so fearful to step out. I feel like success would bring a shitstorm of reprisals, it’s all brakes on me that I feel and they are hurting.