The Struggle to Cope

An account of my recent short stay at Addenbrookes. Features the story of an autistic meltdown, which some readers may find difficult.

INTRODUCTION

I got home latish last night from a short stay at Addenbrookes hospital occasioned initially by a problem with my left leg. This post deals with thise very difficult period of a few days. Advance warning: includes a description of an autistic meltdown. I have two preliminaries to clear up first:

HOSPITAL STAFF DESERVE UNEQUIVOCAL PRAISE

There were times over these few days when I was not fully aware of what was going on around me, but I retained sufficient awareness and understanding of the overall situation to know that the staff at Addenbrookes did everything they could to make things easier for me and that their conduct at what would have been a diffciult time for them as well could not have been improved on. Every subsequent comment in this post should be viewed in the light of this endorsement of Addenbrookes staff.

AGAINST BLAME

There is at least one incident in this post that it would be both incredibly stupid and very destructive to attempt to describe by assigning levels of blame to people, so I am making a conscious effort in this post to keep my language as value neutral as possible. I finish this little section by offering an olive branch to neurotypical readers: I accept RESPONSIBILITY for my autistic meltdown, as in proper English that does not imply that I was actually at fault. By extension I categorically refuse to accept BLAME for the meltdown as that would be admitting to being culpable in the matter.

SUNDAY – EMERGENCY TRIP TO ADDENBROOKES

I had had supper at my aunt’s the previous night and had been told that if my condition changed I was to call her. My condition had changed, and the shaky nature of my phonecall that Sunday morning made it very obvious that I was in some trouble. In the event this necessitated a trip to Accident and Emergency, and although it meant a longer journey by far I opted for Addenbrookes rather than QEH, as they know me there and I have been a patient if theirs for some time. My condition worsened during the journey and a nurse had to assist me from the car into the wheelchair.

It did not take long for the decision to be made to temporarily readmit me as an inpatient. I was initially given Bed 12 on Ward D9, because I was familiar with it, which was a kind thought, although it ended up going pear-shaped.

LEADING UP TO THE MELTDOWN

There was a man in Bed 10 who as well as his other problems was suffering from dementia, which meant that his entire hospital experience consisted of a series of incidents none of which he could understand. He was very noisy in voicing his discontent and confusion, and I got very little sleep that first night, and so by the Monday morning was absolutely exhausted and struggling to cope with the situation in general.

THE MELTDOWN

This section is largely reconstructed the morning after it all happened – I have few direct memories of the meltdown. By late Monday afternoon the noise of the patient with dementia had thoroughly got to me and I was in uncontrollable floods of tears. A meltodwn is difficult to describe, and the best I can do is this:

  1. The dominant feeling is an overpowering level of distress, which I suspect is not just quantitvely but qualitively different from any degree of distress experienced by a neurotypical person.
  2. Behind that is a sense of utter helplessness which again is not experienced anywhere other than during an autistic meltdown.

The reason it is difficuklt to produce direct memories of such things is that there is also a third effect which is analagous to several fuses blowing in one’s brain at the same time.

In what was a very difficult situation the staff responded magnificently. I was moved to another bed in a corner of a four-bed unit, where I would remain for the rest of my stay. 

I am as certain as a hospital environment allows me to be that I was in my new location by 6PM, which means that I have 14 hours unaccounted for, between then and regaining full awareness at about 8 the following morning. I am aware from further reconstruction that Lisa was in charge that night and that she must have done a superb job of looking after me at a very difficult time because I remember her being around.

TUESDAY – FRIDAY

I was much calmer from this point on, and whenever the opportunity arose I made a point of acknowledging all that the staff had done to help me – their response at my time of greatest need could not have been improved on, and the subsequent kindness I was shown over those last few days also had its impact. The treatments I underwent included blood transfusions (my haemoglobin levels were very low indeed at the start of the week, and still someway below healthy levels by the time I was given the last transfusions on Friday morning), an iron infusion to deal with low levels of that substance and my last dose of Bleomycin.

HOME

I got home about 9PM yesterday, but I had two important communications to make to before I could think about bed – one to Karan who has been an absolute brick to put her back in the picture and one to my contact at Tapping House regarding professional support at a PIP session (I will not get through such a session with Capita without professional support and so I had to contact the person most likely to be able to help).

Author: Thomas

I am branch secretary of NAS West Norfolk and #actuallyautistic (diagnosed 10 years ago at the comparatively advanced age of 31). I am a keen photographer, so that most of my own posts contain photos. I am a keen cricket fan and often write about that subject. I also focus a lot on politics and on nature.

8 thoughts on “The Struggle to Cope”

  1. Thomas I have to say I never fail to be amazed by your levels of tolerance and stoicism throughout what is undoubtedly a very testing and it has to be admitted, terrifying time in your life. Your honesty and ability to describe your experiences will prove very useful for so many people in helping them to understand the autistic experience, albeit unique to each individual it still gives a remarkable insight and is possibly particularly useful in helping people to empathise with people who are less verbally able. you are an outstanding advocate for the world of autism . Thank you.

    1. Thank you for your kind comment. I am doing my best to offer an honest insight into my current struggles in the hope that people will find things in there that are useful for them as well. I am delighted with the way this post has been received, since people could have found something so raw to be offputting, but this was not a pill that I was prepared to sugarcoat – it had to be given straight.

  2. It sounds like you coped very well with this situation. It also sounds like you are very sensitive to other people’s struggles, and that is a good thing. It must have been very hard to have been kept awake by a man who had trouble communicating due to dementia. It seems like your distress may have been that you, as neurodiverse yourself, could feel this man’s struggles and pains more acutely than an NT might have. Please value your empathic gifts, even when they are hard.

    1. Thank you, Nicola. You are right that my own neurodiversity makes me sensitive to other people experiencing mental struggles and I thank you for being so positive about it.

  3. During my father’s last days in hospital this past October there were many challenging patients who became temporary neighbours…it was hard to find grace and compassion as a visitor sometimes, but my father somehow found some humour and I learned to adapt…your post is filled with the same gentle humour and compassion, thank you for sharing!

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