Poetry Corner: Migraine

Tears escape, torn up inside

Nothing right, scared to die

 

Too much everything becomes the pain I feel

The light, the sound they hurt so very much

Like a sledge hammer even the lightest touch

 

No such thing as silence, there is no rest

I hear in colour, the sheets like sandpaper at best

I want to sleep, the shadows terrify heart

My days and nights, my conscious drifting apart

 

The sea and darkness surround my art and thought

I would drift or drown, I have forgotten how to even fail

I have no idea about what it is that will prevail

It is dark, I’m lost, drifting to who knows where

Don’t destroy those who dare to be close and care

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Dear Diary: The Night Is Dark And Full of Terrors

My attacks happen in my sleep.

I wake up, sometimes I am ok.

Sometimes I am not.

Sometimes I am paralysed

Sometimes a little.

Sometimes a lot.

Sometimes I can speak.

Sometimes I slur.

Sometimes I make no sense.

One time it didn’t hurt.

But I woke up.

And sound strummed agony for chords

I tried to smile but that didn’t work

Monday Night Reflection – Success and Failure

I planned to take a week off after competing and it ended up being a very good idea. The competition when exceptionally well and I secured my qualification for the British Finals as I set out to do, came back healthy and am now on course to go from the British Finals to the World Championships and be considered a contender.

That is the success, and I am not going to down play that success, I am still stunned to have this amazing opportunity at all, let alone after all that has happened so far this year. The weekend was successful with many improvements in self-management and performance management across the whole time which point towards a successful British performance and importantly that this will open up not just the opportunity to represent Britain at world level but also to be a legitimate podium contender. It is impossible to convey how surreal and odd it feels to be writing that about myself, and how I am proud of what I have done, but at the same time it really does not feel very real so I am not really that proud because I don’t feel I have done that much. Although, as I am told pretty regularly, to have the opportunity only 6 weeks after lying in a hospital with paralysis, its one hell of a comeback.

However, when I got home it had been 8 days without an attack, and while I made it through the weekend out the house when I got in I sat on the sofa and I went out. The full monty, this was a high register attack, lasting well over half an hour with the loss of speech, tone, and with paralysis. This would have been a hospital admission if we did not already know nothing would happen. I was devastated. I knew what was coming and it did, the hangover effects, this time it included the slightly hilarious not being able remember how to write a question mark.

By Wednesday most of the glitchyness was gone, most of my understanding and cognition was back, my emotional fragility was on the way out, and my motor skills were returning, left behind were a headache and dizziness. Its now 8 days later, and several smaller attacks later as well and I am at best 80% back to where I was 6pm on that Sunday night.

That was the failure. It probably feels like a bigger set back than it really is, but it is a real setback. I did have plans for the week after half term and so far to day I have lost most of the morning because I passed out, and I cant drive till we are sure I am safe which along with my motor skills and paralysis changes the athletic endeavour part of my life significantly. But I am still embarking on this part of my personal, professional and life journey back from where I really wanted to be. Even this reflection is not the reflection I would have wanted to be writing.

This is Monday, last week pushed me back, but I have achievement locked, and I have plans to grow my business project slowly but surely, I have another small scale little income project running and that can run its life and earn its little bit while it burns too, and I am busy taking the steps I can to get from where I am to where I want to be accepting they are smaller than I may have wanted or anticipated but that a step is a step nonetheless and I can build from where I am.

My plans have not changed, they may just take a little longer and happen a little more slowly.

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.

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.