Worn out or wearing out?

Working hard, training hard. Stressed about Covid-19, lockdown measures being eased: this is current state of play.

Work is demanding, this involves very long shifts in which you never switch off really, even when you’re technically having a quiet moment (literally, I am drafting this whilst having a cup of coffee, with one ear and eye keeping an eye on the client). Again, I expect the job to be demanding.

Training is demanding, but seven weeks away from an eight hour cross-country race, I would hope so. The rewards appear to be developing.

We’re all worried about Covid and the easing of lockdown, or at least we should be. From my own perspective, the unpredictability of the situation, plays hell with my autism; we need routine and order and the world is anything but predictable or organised.

Having to constantly adapt or prepare to adapt is, frankly, exhausting. Not least because I spend a lot of my time having to ease this stress for people who need far more support and assistance than I. I seem to be struggling for writing motivation at the moment, suspecting a slight burnout, so please bare with me. I am intending to post some kit reviews over the coming weeks.

Preparing for the unexpected

So far, I’m still training for races which may or may not be occurring.

I have the weekend off for the August bank holiday, which allows me to compete in the Torq in Your Sleep 6 hour race.

That said, it seems that some non-bike races in September are cancelled this year, including The Great North Run; an event that I have always had an inclination to do. Maybe next year. Goals are vital to me and next year there is quite a lot that I want to do.

In the meantime, it’s important to remain positive, wash your hands (a lot) and keep healthy.

Anyone struggling with mood and keep on technology, have a look at the HeadsUp app, I find it helpful to make a note of my physical, mental and emotional moods on a daily basis.

Plans, training and unpredictability

As I’ve stated previously, amongst the traits which people on the autistic spectrum have, reliance on a routine or plan is one of them. Myself included; that said, I have full comprehension of the fact that the current situation vis a vis Covid-19 has meant that things are rather different to a pre-civid world. I’m conscious of the need to maintain social distancing and limit travel, not really see friends or family etc. All fine, I can cope with this, whilst I like some people, I don’t want or need to be around the vast majority of them, I would much rather be in a small group than a large one, probably why house parties are my personal idea of hell, whilst a dinner party seems like a jolly good idea (plus, I like food!)

Now, I’m really good with plans, I build one for most things, I can build one very quickly. Without it, I admit that things either don’t get done, I get a lot less pleasure from them or they cause me huge amounts of anxiety. I am also reasonably good at what my employers refer to as a ‘dynamic risk assessment’, which means that I am able to assess risk as it might occur and plan around it to limit or reduce harm or incident: this is a vital skill when supporting people on the spectrum. It has on occasion meant that ‘I have seen the ‘stupid’ before I did it’ (not always, but hey, everyone one of us is a work in progress!) .

Anyway, Cv-19 has changed the world, at least for the moment; for how long, we have yet to determine and on this forum, I will refrain from comment on the political handling, or mishandling of a crisis. For me, I personally find queuing incredibly stressful, and now, we have to queue for everything. Apparently all shops are due to open in the coming fortnight and the public are being encouraged, or rather pressured to spend money in order to “kickstart the economy”. My thoughts on this are, ‘Great, more queues to buy shit I can get online without the queues.’ Ergo, I will simply shop online; we won’t be able to browse in the way we could before lockdown; nor for those of us who are sensory, will we be able to touch fabrics. We won’t be able try on items of clothing in store and I can’t be appeased with the promise of a pint or lunch somewhere for enduring the queues and crowds of people all waiting two hours to buy something awful from Primark.

The mountain biking bit: –

So, moving onto my own plans and training. As I have previously stated, I had Covid and frankly it kicked the crap out of me. I’m not fully recovered; I have occasional inexplicable breathless bouts on occasion. I am, however, doing well. My Vo2Max is pretty much back to where it was, my heart rate is good and I’m training and working hard. I had planned three races for this season: all endurance races, Hammers8, Exposure Twenty-four:12, and Torqinyoursleep. All of these were planned on the basis that I had fairly decent endurance and stamina and that I think that I can do at least reasonably well in these multi-hour races.

Outdoors but still indoors. At least I’m not scared of people coughing.

My training has largely been using a turbo trainer at home, my race bike has been having some repairs done (coinciding with me being sick) and is not being serviced and rebuilt. The turbo trainer seems to be producing decent results, although it’s generally hot and uncomfortable. It does mean, that living in a one bedroom flat without a tumble dryer, there seems to a constant cycle of bib shorts either in the wash or drying.

I had managed to arrange shifts to allow for me to do the Hammers8, an 8 hour race up in Hamsterly Forest, in County Durham. However, the event was postponed until the end of October and I’m not quite sure if I want to camp in the North East of England in practically November, it’s also a little too far for me to drive there and back in a day with racing for 8 hours, pre-rides, warm ups and all of the usual preparation and what is commonly referred to as ‘fannying about’.

Sadly cancelled

I have arranged annual leave for a week at the end of July for the Twenty-four:12. This was going to be my first 12 hour race. Yes, 12 hours (ish) of racing a mountain bike. It was also a chance to see family who live in Devon and Cornwall and for my partner and I we were very much treating it as our main holiday this year; we’d brought a new tent, various camping equipment was being replaced etc., I have also invested in a new and very shiny new bar light (I may do a review in a few weeks, once I’ve had chance to try it out).

As such we were both very much looking forward to a few days and a change of scenery. For her, it would allow her a chance to escape from the working from home ritual, meet some of my family (who I don’t see often, if they still speak to me, but all of which live at least a hundred miles away) whilst for me, a change and chance to do what I enjoy, hang around with other mountain bikers, see some family members, go camping and race. Which is pretty much as good as it gets in my mind, at least whilst staying in the U.K.

As we both have the leave booked and the hire car and cat-sitter, new tent etc., we may still try and find a campsite and go and visit, but it’s uncertain whether any will be open or not and whilst I am happy riding on my own, it’s less fun when you don’t have a clue where you’re going or having to stop every five minutes in order to navigate.

*Yes, I realise that staying home and staying safe is crucial, but the reality is that my partner and I haven’t left the house other than as sanctioned by the government since lockdown started, which frankly is showing more respect for the rules than the Government and it’s own advisers have done.

The unknown variable…

The third race, The Torqinyoursleep, is in Hampshire, near Guildford, which is not an insurmountable distance away, but still warranting a hire car and a Saturday – Monday. It’s on a Sunday and whilst the initial plan had been to do the 6 hour race, if there’s nothing else on for the foreseeable, I might as well put my neck on the line and do the 12 hour.

However, here’s the but, the event clashes with someone else on my team being on annual leave. Therefore, I can’t get leave. I have requested that my shifts are based so as to allow me to still get the Saturday, Sunday and Monday, but rotas aren’t arranged this far in advance and I’ve yet to receive any word on whether it is possible. Therefore, I am unsure whether I can race or not. I think that I will simply have to explain this all to my line manager and see if something can be arranged; obviously things such a hire car, cat sitter and such all need to be factored into the equation.

Of course, all of this assumes that any event happens and there isn’t a second spike in the transmission and mortality rate.

Social isolation and lockdown

We’re now on day I cannot even remember the number. I’ve also been sick for a period of six weeks and recovering for a couple.

Change of routine haven’t really affected me too much; I am a support worker, so if I have either been going to work or at home sick. I understand that my routines are important to me, but also the fact that I work shifts means that I try not to get too bogged down by ‘on Friday night, I go the pub between 6 and 9pm’, or ‘I must go out for a walk in the morning every day’. My routine isn’t fixed in that way. Sure, I need to have an espresso first thing on waking regardless that’s 5am or 11am. I also stop drinking coffee after lunchtime as I value my sleep far too much.

I’m fortunate in that I have full comprehension of risk and awareness and therefore I am quite happy to not take unnecessary risks with my health; the jury is still out whether once been Covid-19 positive provides a resistance to further infection or if the virus is already mutating. I can state with confidence, that I really don’t want to feel that I’ll again.

For the cycling geeks, I can state that my Vo2max went from 47 to 32 more or less overnight and only hard work and an effective recovery have seen this return and that took 7 weeks.

Basically, my obsessions involve being able to do things for which I need to fit and healthy and when I’m sick, I cannot maintain those. Ergo, my health really is paramount. As my constitutional law lecturer battered into me, decades ago “There is no such thing as unlimited altruism.” Meaning that I care deeply about others, but that I also have a degree of self-interest.

Therefore, I am happy to maintain social distancing, despite the fact that normally I am a person who hugs everyone. I also have little desire to return to a bar or other entertainment venue until I know that it’s safe to do so and that social distancing is being observed.

I have finally committed to a proper training plan during the last couple of weeks and already seeing results, although after being sick, improvement is not necessarily an improvement upon 8 weeks ago. Also, my race bike is in for a repair from a crack in the seat stay and having just brought a power meter to only use it once, I have yet to assess improvement or not on an actual trail, rather than a virtual environment, which has become more important during my recovery.

Maintaining a positive mental outlook has become increasingly important over the last year or so and even more over the last couple of months: having suffered from dark days, weeks and months in the past, I simply do not want to return there. The “black dog” can sit in a kennel and sleep quietly, we’re both aware of each other, but I’m not wanting to wake him.

The lockdown will pass and some kind of normal will return. In the meantime, I am rather enjoying a greater degree of wildlife, less traffic noise, a quieter commute and less hustle and bustle.

I have races planned. Fitness is improving and I am looking forward to competition again. I thrive on plans and enjoying the planning.

I don’t have all of the answers and life is rather less than certain at the moment. However, I’m just happy to be me at this point and having an understanding of how my neurological composition affects me, the main thing is having a plan, but accepting that it may not be 100% certain and that uncertainty isn’t anything I can control.

Covid-19 and it’s challenges

It’s a new and unprecedented world at the moment. Most places being on lockdown and the prospect of the virus changing the way we live and for those of us on the spectrum, our routines.

I’ve been quiet for the last few weeks, because, I myself have been sick. I’ve been admitted, albeit briefly to hospital being unable breathe; this was a scary experience, with paramedics arriving at my home in full ‘hazmat’ suits. I was diagnosed with Covid and a chest infection. Two weeks later and my breathing is starting to become normalised.

Like many competitive athletes, I measure a lot of metrics; heart rate, VO2 Max, lung capacity, sleep patterns, even mood. All of this data can be analysed for marginal improvement or to show if something is wrong. Being this sick has thrown everything way out: I am four weeks behind on my training programme and the only real exercise has been one ride and one decent walk, in almost a month. Normally, I would be climbing the walls, but I’m not. I am slowly recovering, because, frankly I cannot do anything much more than that.

Normative behaviour for people is changing as well. For me and others on the spectrum this is more difficult than others. I have routine, I plan everything meticulously and I can be resistant towards upheaval. That said, I am attempting to be pragmatic about the situation as negative emotions mean that I am far more given to depression and that’s something to desperately try to avoid.

So I, and we need to create new ‘normal’ and acknowledge that this will change in time. We have no idea of how long lockdown measures will be imposed but I suspect, with only a rudimentary knowledge of biology and hazardous materials, that some level of restrictions are going to be with us for a long time, at least until there is either a cure or a vaccine and who knows how long that will take.

Training, once I can is going to largely consist of turbo training, indoor which is hot and uncomfortable but it is productive in building power and endurance. Anything outside will be kept to simple trails. There’s no point risking an injury from riding anything technical and requiring emergency services and treatment; the hospital staff are doing an amazing job and adding to their burden is selfish. For reference, anyone interested I use a Tacx Satori smart trainer and Zwift as software.

I am looking forward to being able to go for a run again. This, can be done with minimum risk and cross training is important.

I miss living in nature, when in Switzerland, where I lived in an alpine village and had trails to walk, run or ride on my doorstep. This will always been my long term future goal.

I suspect that gyms are going to be closed for a while, but we have balance boards, a Swiss ball, a couple of kettlebells and other stuff which will allow for some strength work.

For socialisation, I have been reliant upon social media and technology for a long time, this is the result of living further away from friends. So, phone calls, Facebook and all of those things have continued to offer a normal.

I am also considering doing an online radio show during the lockdown; I cannot run club nights for the time being. My partner and I have found an interest in houseplants, the challenge being something that isn’t toxic to cats.

So, the challenge is staying healthy and well. Goals and ambitions have been second to fighting one hell of a virus and I cannot recall a time in which I have felt quite so physically battered and when I have had so little energy, yet my emotional and psychological state has been so stable and positive.

With the simple fact that the virus is going to impact upon all of our lives for some time yet, it’s important to create new routine. Once I am fit to go out and back to work, this begins; in the meantime I can starting planning new norms.

It’s also interesting that English case law has determined that for people with autism who enjoy exercise, they are not restricted to only once a day, but social distancing must be adhered to. This recognition that some individuals have greater need than others, hopefully this will make people’s quality of lives better and for me in a support worker role, it allows me more scope to satisfy my service user’s needs, albeit, subject to a great deal of other restrictions.

Stay safe, stay home and stay well.

In lockdown

The reason I am currently quiet is because I am recovering from what is being treated as a case of Covid-19: thankfully it would appear to be a mild case, but it’s not been a pleasant experience.

Day 12 of being at home so far. I can envisage that turbo training will become an integral part of my routine; it’s pretty good at producing results for the time crunched and upon recovery, I return to work and back being short on time.

So looking at life and my routine during this time; I miss several aspects of socialisation, I miss being able to freely take a walk, to ride with friends and have a pint afterwards. The reduced volume of foot and road traffic suits me: I was, in large, happier in a Country with less people and crowds anyway and with a partner who deals with crowds badly, less people make us both less anxious.

I have since lock down, found an interest in cat-friendly house plants and have a DIY terrarium kit on order. Increasingly, shopping is undertaken online and we’ve even found beer deliveries.

It’s strange how the definition of ‘key worker’ has changed; going from often seen as “unskilled labour” to vital to the nation. I am one of those people. Am I actually unskilled? No, not at all, I require a higher level of continuing professional development than a lawyer. I am trained to administer medication including restricted medication. I am a creative problem solver, working with a pre-verbal individual means that you need to determine a person’s wants and needs. Planning and project management, report writing, risk assessments, health and safety, food hygiene, infection control and many other things come into my role.

Hopefully after the pandemic finally ends, whenever that might be, these key workers, who have kept the nation running will receive better treatment, greater recognition and an increase in salaries. Rather than just the elite few city brokers and bankers getting six figure bonuses which they largely drink and snort anyway.

Who knows what life will be like in the days, weeks or months to come. I suspect that it will change many people and force change upon others. Arguably, as a planet, we need to use cars less, exercise more, waste less and consider other more. Will this happen? Only time will tell I think.

In the meantime, stay safe, stay well and if possible, stay at home.

Weird place

Like everyone else, I find myself in the midst of the pandemic confused and disoriented by this disease and the effects upon the world and those around me. No one can predict the effects, the spread or whether or not the individual will maintain their own health in the face of a challenging and unprecedented situation.

Working in a support role, I find myself as a key worker, not quite sure of what or how to do anything next. In line with policies and procedures, hygiene has been stepped up; the service users are on lock down as one is displaying flu-like symptoms. None of the staff (all of which are excellent) know how long we will be locked down or how things are going to pan out.

In short, it all feels very strange. The normal routines which help the service users in line with their support plans are now subject to a whole raft of ever-changing rules and procedures. The service users are board, frustrated and unhappy (as well as one being unwell). They don’t understand why and all we can do is make being in isolation as comfortable as possible.

For me, it all feels rather dreamlike; I crave order and certainty and there really isn’t the usual level of these things at the moment. As such, my anxiety is far too high and I am really not functioning at my best. But I guess that I am functioning, that means something. I am trying to create order in amongst the chaos; as such at work I throw myself into endless cleaning and disinfection; coupled with monitoring temperatures and increasing fluid intake.

I have found that my sense of time is out of synch and even with a watch on, time still feels abstract. The fact that most people appear to be following lockdown again makes everything feel strange, so few people around. Although whenever I seem groups of people I tend to judge them adversely.

In the meantime, at least I can get out and train this afternoon and training alone isn’t necessarily a bad thing. I will look forward to company when I can have it but in the meantime I will try to keep this part of my life reasonably normal.

Stay safe, maintain distance from others and minimise contact with people who are non-essential. Listen to advise from the government and employers and try to be nice to each other.

Routines and predictability

In light of Covid-19, the world has become a lot less predictable, this makes establishing and sticking with a routine a lot more difficult.

Working as support staff, we plan activities each day as part of the service user’s routine and try our best to limit change as this increases anxiety.

For me, this means work is more unpredictable, and therefore more challenging. At the moment, for us as for many people, guidelines are in constant flux and we’re constantly waiting to find out the next decree to determine what we’re supposed to do next. I’m rather more than sick of watching the PM punctuate every sentence with half a dozen “um”.

In cycling terms, yes riding is healthy and in the open, thus offering little chance of contagion. This makes me happy.

In terms of competing; I currently have an 8 hour and a 12 hour endurance race at the end of April and July so here’s hoping that they still go ahead. Then other stuff in August and September, again, let’s see how this pans out.

In the meantime, try to stay safe, try to keep to a routine and I look forward to seeing the other side of this.

A neurological condition…

Some people think of autism as a mental health illness, this is incorrect. We may have co-existing mental health issues, such as depression.

In this post, I am referring to autistic people without severe learning disabilities.

I wanted to discuss something I call the ‘autism excuse’. A lot of autistic people are perfectly capable of knowing or learning the difference between right and wrong.

A friend of mine was recently assaulted by a teenager, who’s peer group said “You can’t do anything, he’s autistic.” This sort of thing makes my blood boil; there is a world of difference between a neurological overload and illegality.

Let’s look at this for a moment, the cold hard and unfeeling thinking of a jurisprudential mind says the there are two components to a criminal action (1) the actual reus – the act, and the (2) the men’s rea – the required mental state or intention.

At the point of a meltdown, a person has little or no control over their actions, they are simply overwhelmed and therefore there is no mental intention or at the very least it is impaired. There may be times that this will have a bearing on legal proceedings.

In the event that a person strikes out, kicks, head buts , grabs or something like that at a point of overload, it’s outside of their control. Grabbing a person’s glasses and breaking them, well that’s a deliberate and calculated act.

So when faced with a situation, ask yourself whether the individual is actually in control before accepting the unacceptable.

Romance is in the air… or the card shops

The following is an excerpt from an recent interview: –

It is a truth universally acknowledged that, though wonderful at times, romantic relationships can be really difficult to manage.

Relationships can be even more difficult for autistic people, who may struggle with the social nuances and complexities of things like dating and maintaining relationships. 

With this in mind, we interviewed Paul Smith, autistic man, keen mountain biker, and Support Worker at our charity’s Adult Service in Skipton. Paul chatted to us about life on the spectrum, how he and his partner are spending Valentine’s Day, and navigating the maze of modern love as an autistic person. 

When were you diagnosed as autistic? 

I was diagnosed three or four years ago by a nurse who had experience working with autistic people. At the time I didn’t know a lot about autism, but I definitely embraced the ‘knowledge is power’ approach and decided to find out more. 

I also taught English as foreign language for a while, and developed an interest in Special Education Needs and Support, including speech and language therapy and exploring different ways of communicating. 

What is being autistic like for you?

It’s very different on different days. I’d say it’s difficult for me to find a fit with people. I wrote a piece on my blog about how autism is often described as like a jigsaw piece. But I feel the metaphor is an oversimplification as life isn’t just a single puzzle piece. 

Almost everything in life revolves around social communication, which is something I find difficult, being on the spectrum. This is something I try to be very open about with other people. Often subtle social cues can be lost on me – this can be tricky when it comes to things like romantic relationships.

Speaking of, are you celebrating Valentine’s Day this year?

I’m actually working my first night shift (in my role as a support worker), which falls on Valentine’s Day this year. I’ll probably have lunch with my partner though. – [I think you said wine and a sandwich would do?] 

Do you do anything to mark Valentine’s Day with the adults you support?

No, we don’t tend to celebrate in any way. The adults I work with are not really at the stage where they are ready to consider things like Valentine’s Day or enter into romantic relationships at the moment. Gifts are made for close family members and my role is in supporting my client with making these.

How do you feel about Valentine’s Day generally?

I think Valentine’s Day can be a bit exploitative [often just a way for corporations to make money?]. Why wait until just one day in the year?

I’m also just not good with remembering important calendar dates – Valentine’s Days, birthdays etc. There seems to be a day for everything, so it’s hard to keep up! But if I see something I think my partner would like (on any given day) I’ll buy it for her, rather than waiting for one specific day. 

Is your partner also autistic?

No, but her brother is on the spectrum, so she has some insight into what being autistic is like. She also struggles with anxiety and other mental health issues, which is something we both share [and can support each other with?] 

You mentioned finding relationships difficult, why?

A lot of subtle nuances which are a big part of relationships and meeting people – eg. body language,  – are lost on me. When I was single I’d often find it really hard to tell, in the moment, if someone liked me and would only realise when it was too late.

I think relationships are complicated because people are complicated, and it isn’t only autistic people who find it hard. 

Do you think things like the media and societal expectations influence how we view relationships?

I think the media does have a part to play in it, yes – especially having worked in that industry myself as a presenter.

Positive relationships in film and TV are often portrayed as easy and effortless, when this just isn’t the case in reality.