Big weekend and tired now

It has been a big and busy weekend. My girlfriend and I went to Switzerland. I was intending to be racing on Saturday in Gruyere, but as I am still awaiting surgery and can’t ride at the moment, plans changed.

So, we did the second part of the trip; travelling by rail from Geneva airport to Interlaken. We’re were able to marvel at the views over the lakes and central alps (notably the Jungfrau, Eiger and Mönch. We hiked a little, enjoyed the scenery and I proposed. So a big weekend. For me, being back in a Country I love and miss made sharing this holiday wonderful. We just need to go back for longer next time.

No sleep on the return leg means that I’m currently still exhausted. I used to be able to go days without sleep and now one night and I’m useless for days. 

I have my surgery booked for Monday so hopefully I can get back on the bike within a few more days.

#autism #travel #switzerland #hiking #jungfrau #harderkulme

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Overwhelmed

(This blog was drafted on Monday morning)

I seem to have been bogged down in application forms and interviews for the last two weeks. I was offered a job working as a support worker for students with autism, but despite me having applied for a role in Manchester, I was offered one almost a 100 miles away on a zero-hour contract. Needless to say, I have declined the offer.

If this blog seems a little erratic, that’s probably down to the fact that I couldn’t sleep last night so I’ve been online all night completing more applications and now I have the cat sleeping deeply on my lap and I’m not wanting to move her. So, espresso and lack of sleep can be my justification.

Interviews are always a challenge for most people. Now, I am aware that some people on the spectrum struggle with meeting new people; this is something that I trained myself out of many years ago. I worked in environments which require interaction with a constant influx of new people and we can learn to deal with an awful lot. I’m reasonably OK with new people, but my personal struggle comes in communicating on a deeper level; I can’t read people easily and when I do, I frequently reach the wrong conclusion. I have taken the attitude that, in interviews, I tend to tell people that I am on the spectrum and explain that I may just be more specific in conversation and that whilst it might appear that I’m making eye contact I won’t be and if my eyes wonder slightly it’s not me being rude. (I try to look at a person’s nose or eyebrows, which gives the impression of making eye contact.)

So in all, it has been a stressful few weeks and I’m still waiting on surgery to remove the pins from my ankle, which will allow me to get back on the bike and running again, both of which help me to feel ‘normal and healthy’. My surgical appointment is booked for the 23rd of September and hopefully recovery won’t take more than a few days.

Watching the mountain bike racing on Redbull TV reminds me how much I’m missing it and that I was supposed to be racing in Switzerland this coming weekend. As I’m not able to ride, let alone race, we have decided to simply take a couple of days to get away, enjoy being in the mountains and relax; I’ve not had a holiday since 2016 and then I ran a marathon up the Jungfrau (great fun but not particularly relaxing). So, cat sitting services have been found and myself and my girlfriend are very much looking forward to a few days away. **

** Wednesday morning edit prior to publishing. 

I was expecting and promised the return of money from family which was going to pay for spending money to go on holiday. Said money has not been returned and I’m simply not able to get a reply from my brother (who is lousy with answering the damn phone anyway). I’m in two minds as to whether I cancel the trip, we really can’t go to Switzerland without money, I remember how expensive a bag of groceries or a sandwich is and I haven’t lived or visited in three years. 

As I cope with interaction with others and daily functioning by use of creating plans, routines and structure, I find myself currently wanting to tear my skin off, whilst trying to type whilst stimming with my head and feet.

Meltdowns, wipeouts and forms

It’s been a hell of a couple of weeks. This is why I missed posting last week.

As discussed earlier, burnouts seem to happen to most people on the spectrum; I had three massive meltdowns inside a week; at one point stood in the Job Centre having a complete crisis because of staff being unable to give me correct information and as is typical, no one accepts culpability for their actions and most just blatantly lie or make excuses.

I’m also up to my eyes in interviews, assessments and application forms. All of these are things that on their own cause my anxiety to raise, combining them, makes life really challenging. I’m currently on my way to an interview and remain positive because that’s one of the keys things to a happy life.

Things will always be challenging but we can overcome so many things and we (the neurodiverse are brilliant people who add depth and creativity to the world)

A patient without patience

Finally heard back from Bradford Royal Infirmary. Well, I chased them as I had to change my mobile number anyway.

My appointment to have the metal work removed is on the 30th of September. This is 11 weeks after my accident. Almost three months! Now, I appreciate that the NHS does wonderful work and that I’m not a life or death case, but for a simple day surgery, this seems a stupid length of time.

This compounds my frustration as I have a weekend away with my girlfriend booked in mid-September and we are in the Alps and will want to go walking and exploring in the mountains, that’s why I selected that particular area as a base. Therefore, we won’t get as much out of the trip as hoped for and that frustrates me.

Plus, this long off the bike will affect my fitness badly and I have other plans in the pipeline which require me being fit.

I either try and push through with the help of painkillers or I continue to take it easy; neither of which are ideal. I’m hoping that the responsible local authority admit liability before this date and we can move forward with great speed.

I find that patience is not my strong suit, I want results and I want them more or less immediately, maybe that’s reflective of a speed of modern society or maybe it’s a part of my psyche, maybe it’s related to my Aspergers. I don’t really know, but I know that I hate waiting. Once I can visualise something, then I become incredibly focused upon attaining that goal. I realise that my level of drive is often a positive thing, but it drives me mad when factors are outside of my control.

In the meantime, I’m forced to wait and that increases my frustration and anxiety.

I’m sure that I’m not the only one who feels like this and I would be very interested in speaking with others who feel the same way.

 

Differences

I had a conversation last night about a potential collaboration project with a friend who has an autistic child. She asked me for advice in relation to meltdowns. As I’ve said before, I am not an autism expert nor am I a professional working in a clinical field. I am, however, a keen advocate on equality and integration for all and I have an understanding on how my own autism affects me and my life.

Where does my autism stop and my personality begin?

This is something of a difficult question to answer. Like anyone on the spectrum, the impact of living with a neurological difference impacts upon us in a myriad of different ways; each of being different but sharing some common ground, insofar as difficulties in communication, social interaction and compulsive or obsessive tendencies.

 

Brookdale Triad Diag UpdatedI don’t often have catastrophic level meltdown, in which things get thrown and damaged. I blame slam doors and such, but the only real damage is to myself. Meltdowns are hell, but we, as autistic people don’t have control over them, or our behaviour during these moments.

In reality, I am much more passive and I tend to simply ‘shut down’, this is my brain telling me to simply disengage in order to protect itself from over stimulus. The effect of this from the outside is that I appear to become sullen and disinterested in my environment. I’m neither, my brain has just too much processing and I need to take a mental downtime.

Some things which help me.

  1. Knowledge:

The old adage about knowledge is power, I’m not sure that it’s actually power, but it is empowering. I try and learn as much about the condition as possible, this allows me to understand why I react to things in the way I do and helps me to begin to find coping strategies. 

2. Headphones:

Good headphones and music to help reduce the impact of the environment upon me. Music is very important to me, and as a former DJ I have a lot of it. Music is very subjective so I wouldn’t claim to have much in the way of bad music. If I’m using public transport, I will have music on. This allows me to have some control over the level of noise. 

3. Fidget toys:

I have several items which allow me to move my hands and fingers. 

4. Compression clothing:

I favour clothing which fits close to my body. If I’m entering a high stress environment, I will wear a t-shirt which applies pressure to my body. It’s like being hugged, I much prefer a firm hug. 

Again, any or all of the above may help some people. It really is a case of trial and error. As an adult, I am finding coping strategies which reduce the sense of being completely overwhelmed.

I hope that this helps with further understanding.

Energy levels depleted

It’s taken me longer than I planned to write this entry because of my lack of energy. Writing about this whilst in the throws of it has taken more effort than I had planned but it’s a way of creating a little structure to my Wednesday.

My routine is shot to all hell at the moment. My normal routine is get up, breakfast, social media stuff and personal admin, tutoring, lunch, chill for an hour to allow digestion and then training. At the moment, with the pin in my ankle limiting what I can do, I’m not training. This has thrown my routine completely out and therefore I am struggling to find any order.

I realise that not training is the logical thing, I also realise that the current pain levels are affecting my motivation and energy to say nothing of the effect on my mental state. I’ve had to cancel a couple of races I had planned to do in the next few months, which is incredibly frustrating; but I know that I will just not be race ready. To this end, after surgery, I need to reset goals and restart my training programme. I also need to give myself an event or day out on the bike to mentally look forward to. So that’s my physical health discussed and I apologise to the people close to me about moaning about being in pain and feeling general frustration and malaise.

With all of this in mind, I thought that it’s important to talk about the effect that these changes can have on a person’s mental health. For me, I’m a person who doesn’t sit still for long. I struggle to simply sit and I’m always moving; partially I use pacing as a stimming behaviour, especially when I’m on the telephone. At the moment, being forced to do less, is leading to a feeling of going from having boundless energy to having none. I literally fall asleep constantly, lack of routine means that I don’t have the energy to establish a new one and my patterns are completely out of synch.

Having done some research, it would appear that the cause of this is what simply referred to as ‘autistic burnout’. This might also seen as the neurological effect of putting the brain and body into ‘safe mode’ which the brain and body does in order to protect itself from the difficulties in life.

Symptoms include, but are not limited to: –

  • lack of energy and a growing lethargy
  • avoidance
  • changes in appetite
  • changes in sensory tolerances
  • changes in use or modes of language
  • struggling to regulate moods and emotional state
  • slowing of thought process
  • brain fog
  • lack of ability to motivate oneself

All of these things may appear to manifest in a similar fashion to depression and obviously, this makes diagnosis all the harder for professionals. (Which, I am not.)

I’m a highly logical person and I question why do I have this feeling then? Research states that we, neurodiverse people require more time to decompress than others; we often do this by engaging in our obsessions. Back to mountain biking then; I can’t ride and therefore I am simply not able to enjoy my obsessions and this means that a little like a pressure cooker, the pressure increases until something must give.

Anyway, until next time.

A couple of great articles here  and also here

 

Things I can’t control

People with autism need and form patterns, plans and routines. I’ve always tried to plan everything to a high degree of detail. I meal plan, I plan my working day, I plan my training and relaxation time. Basically, I’m a logistic dream or nightmare, depending upon ones perspective.

I’m currently waiting on my girlfriend to arrive back in the U.K. from Sweden. She’s had a fun trip, visiting a friend and I’m very much looking forward to spending the weekend together; and, yes I do have meals planned.

However, the fly in the ointment takes the form of Norwegian Air deciding to change her return flight and no one thought to notify her of this change. Not the website she booked through or the Airline themselves. The flight was moved forward, by a matter of five hours. I’ve spoken to the website and been informed that the next direct flight to Manchester is at 07:00 tomorrow! Or she can get a flight tonight and have a nine hour layover in Heathrow airport.

I now can’t get hold of her to find out more information. I hate not being able to do anything more than I have done and feel utterly useless. I write this as a means of trying to avoid the alternative, which is simply to have a meltdown.