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.
An account of yesterday’s very successful meeting with a physio from Tapping House.
Louise Gent, physio at Tapping House Hospice, came to visit yesterday as planned. First of all I showed her my flat and demonstrated things like how I get in and out of bed and down to and back up from the toilet. She has arranged to get me a new piece of equipment for the toilet – a combination of a frame and raised seat because she noticed that to get up I had to put both hands on the metal grip to generate sufficient leverage.
This led on to discussions about…
Louise’s opinion having seen me in action was that my basic mobility is not too bad but that because of the fall I took at the weekend I lack confidence, which is entirely accurate as far I am concerned.
I will be attending regular sessions at Tapping House starting fairly soon. They provide transport for people, so this gets me out of the bungalow as well as helping to rebuild confidence and fitness without overstretching family or friends by needing someone to take me to Hillington where they are based.
Tapping House have made it abundantly clear that they will do all that they can to help me, and I in turn will do my absolute best to benefit from their help, for which I am very grateful.
Just one pic today – while I was watching the world go by from by bungalow a magpie was doing likewise from a perch near the top of a tree that is fully visible through my living room window…
A warning about a piece of autism research whose requirements for participation are at best poorly set out and ay worst downright discriminatiory.
Readers of this blog will be well aware that I have taken part in a number of research projects over the years, many of them based in Cambridge. This is therefore a painful little post to write, but one that I feel I must in the circumstances, due to what I conisder to be a completely unacceptable outlining of requirements.
This particular research study demands autistic adults who have at least one GCSE at Grade C or better. This is not a problem for me personally as I actually have a degree, but it does automatically exclude many, and it smacks to me of dishonesty, since my reading of it as that is an attempt to avoid the use of functionality labels while at the same time trying to esnure that they get poeple who they regard as “high functioning”. I could not personally take part in this study because I could only do such things on a basis of trust, and by setting out their requirements in this fashion they have very effectually ensured that trust is not present.
My advice to anyone who is approached with a view to taking part in this study is to refuse to do so, and hope that no one takes part, so that this misbegotten study dies a speedy death.
My advice to those behind this study (I will not name and shame the lead researcher, and kindly do not ask that I do so) is to abandon this version and come up with a more acceptable way of communicating your requirements (including possibly accepting the extra diffculty of opening your study up to all autistic people, rather than seeking to exclude a very significant proportion thereoof). If the necessary work is done and the new version of the study is presented sufficiently sensitively I may be willing to participate, but as it stands at present I cannot and will not have anything to do with it.
Accounts of a very important and successful meeting yesterday morning and of a personally very satisfying moment also from yesterday when it was cinfirmed that I have got anm Arts Award (Bronze level).
This post deals with two things that both happened yesterday, one of huge significance, the other less so but very personally satisfying.
A VERY SUCCESSFUL MEETING WITH REBECCA FROM TAPPING HOUSE
I had arranged to see Rebecca yesterday morning for a follow-up meeting after our first very successful meet-up a little earlier. This meeting went magnificently, with Rebecca making a number excellent and logical suggestions for ways to help me. I have agreed in principle to meet with either an Occupational Therapist or a Physio to talk about ways to improve my physical fitness. She also suggested that I might be interested in courses they run at Tapping House where I would have the opportunity to meet others who have had similiar experiences to my own, which also sounds a very interesting possibility.
Knowing that I need help and support to get through this difficult time in my life I am minded to consider any options that seem sensible, as all of the above do. I finished yesterday’s session feeling much better about life in general for the knowledge that such potentially useful help and support is being made available.
Whatever happens from here on, Tapping House have already proven to be worth their weight in gold, and I am very grateful for everything they are doing for me.
AN ARTS AWARD
One of the last things I did before illness took over my life completely was to submit a portfolio at Musical Keys for an Arts Award (Bronze Level). It has now been confirmed that I did enough to earn to said award (equivalent apparently to a grade D at GCSE), which I am delighted by. In addition to the specific Musical Keys stuff I had to produce something about seeing art in the flesh, and I had chosen something where the only photographic record of the occasion was my own, so this award means, albeit at a low level, official recogniton for my photography. I also had to produce something about an individual artist who had inspired me, and I opted for Maurits Cornelis Escher, for whom there is an official website from which I cribbed (and of course admitted to doing so).
An account of my recent short stay at Addenbrookes. Features the story of an autistic meltdown, which some readers may find difficult.
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.
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.
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:
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.
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.
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).
An account of a very busy and important day in my life, intended to be written as positively as possible.
I am finally relaxing at home after being on the go since about 10:30AM today with various things. This has been a very important and very tiring day for me.
DOCTORS SURGERY 1: BLOOD TEST FOR MAGNESIUM COUNT
Owing to the fact that I was nearly out of chewable magnesium pills (I have been on three a day among the large number of medications I take) I was required to attend the doctor’s surgery for a blood test to assess whether I needed more magnesium or not. This was followed by a return home for…
DISCUSSIONS WITH PEOPLE FROM TAPPING HOUSE RE ONGOING SUPPORT AND PALLIATIVE CARE
This session, which ended up lasting for over an hour, was easily the most constructive I have had with any sort of support workers over the whole time since I became ill. They listened and understood as I told them about the negative effects autism has on me specifically and how that impacts on my support needs. They made some wonderdul suggestions about how best to help me, and it is quite clear that are extremely serious about doing everything possible to support me through my recovery.
I actually felt, as I have not in other circumstances over these few months, that I was being regarded as of interest as a human being, not merely as a patient or as an example of an autistic person (though recognition of this last is hugely important and thoroughly welcomed).
I now believe I can look to the future in the certainty that support which is tailored to my specific needs will be available to me, and that is HUGE news.
LUNCH WITH MY AUNT
When my mother and I initially planned today we had intended to have lunch at Pizza Express, but the tightening of the schedule made that an impossibility. My aunt provided an excellent lunch and as proof that my appetite is returning I was able to eat two platefuls of food. Then it was time for…
My mother had arranged an appointment at Vision Express in King’s Lynn for me to have my eyes properly tested. My current spectacles, which will become my back-up pair in about ten days time definitely address my astimgatism, but they do not fully address the other eye issue I have that lenses can correct, my mild myopia.
I accepted the advice of the experts and for a considerable price went for varifocals tailored to the needs of an IT Professional (which when I am well enough to work is what I what I am).
There do not appear to be any really serious problems with my eyes, although as a safety measure the optometrist made a non-urgent referral to Queen Elizabeth Hospital (which means I shall see them in about six months time – they are permanently struggling).
All in all I was at the opticians for nearly two hours, with a lot of getting up and down and sitting in chairs that may look nice but don’t actually offer a lot of support.
After this it was time for a…
A TOP UP SHOP AT SAINSBURY’S
This was accomplished with a minimum of fuss once we had got there, although there was an incident in the car park that was nearly very unpleasant indeed. A blue van whose driver was clearly about a million light years away mentally pulled out right across our car (it was our right of way – he was bang out out of order), and we came much to close to a crash (of which I would have borne the brunt) for comfort. My mother limited her official response to a single blast on the horn. I can only hope that this near miss woke the driver up properly and he was more careful for the rest of his journey.
We were sufficiently quick shopping to have time for a very short break having…
HOT DRINKS AT MY AUNTS HOUSE
These had to consumed fairly rapidly because of yet another late addition to our busy schedule. I had developed an ache in my left thigh area, which necessitated…
THE DOCTOR’S SURGERY 2: BLOOD TEST FOR POTENTIAL CLOTTING
During my time as an in-patient I had a blood clot around the original site of my piccline, in my left arm, and then a little later an episode of severe chest pain which was mainly caused by pericarditis but contributed to by a small pulmonary embolism, so the possibility of a clot in an unusual location had to be taken seriously.
Thus a tiny sampleof blood was taken from one of my fingers to be tested. Fortunately it came back negative. I have been prescribed extra pain killers but apart from the discomfort it causes there does not be anything serious about the problem with my left leg.
HOME AND PHOTOGRAPHS
Finally, with the clock close to 6PM I was able to leave the surgery and be driven home. I am now somewhat rested from my exertions, and in less pain. Finally for, those of you who have made it to the end, here are some pictures:
An optimistic account of the latest milestone in my ongoing recovery from cancer.
This is an optimistically titled post , borrowing a metaphor from my favourite sport, based on events from today. As I hope you will observe the optimism has some justification…
A TOP UP SHOP AND GAYWOOD LIBRARY
I was running out of coffee and had already decided that I would venture to the local mini supermarket to see if I could stock up there. I decided once I had sallied forth that if I felt reasonable when leaving the shop I would do some extra walking by way of asserting my continued recovery. The purchases duly made (I also bought a couple of biros as I have something of a shortage in that department) I headed off in the general direction of Gaywood Library (smaller but also closer than the main Kings Lynn library). I selected three books from the library (restricting myself to an easily carryable number), gave myself a short restorative break by logging into one of the computers to do some stuff there and then completed the process of borrowing the books.
I walked back by way of a stretch of the Gaywood River, some meadow and the Discovery Centre, arriving back at Columbia Way at about 12:45. I was out and about for just over the hour, meaning that my total time spentg walking was about 40 minutes.
Although I am quite tired from this little excursion I am also glad that I made it, and mark it off as another staging post in the long process of recovery.
Here are the photographs from my little expedition: