Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Reactions to Diagnoses

79-2017-01-05-13-36-21“Diagnosis” is a word that has featured rather heavily in my life recently, and even more so during the last couple of weeks. It’s a word that is loaded with all sorts of associations, both good and bad. A diagnosis can provide relief or despair, enlightenment or desperation. It can be something wanted and welcomed, or something that is most definitely not welcome and not wanted. But I would suggest that a diagnosis of almost any description provides information, and therefore the ability to make choices based on that information.

One of the first (and simplest) diagnoses I received was that of asthma. It was clear, once the doctor had assessed my lung function and made the diagnosis, what I needed to do. I was prescribed inhalers (and later pills), given advice about using them, and sent off to enjoy my new breathing capabilities (and new found ability to exercise). Once flu jabs were introduced I also started having one each year to reduce the likelihood of getting the sort of infection that might aggravate my already sensitive lungs. Although having asthma isn’t the greatest thing in the world, the fact that I received a diagnosis and can therefore get appropriate treatment is, in general, a really positive thing. Discovering that the reason I still had a persistent cough after many many months (I was drinking 2 bottles of cough syrup every day and not improving) was the result of my being asthmatic rather than having some more sinister problem was actually a great relief.

And so, a week and a half ago, I received my autism diagnosis. It’s not been quite as simple as getting a diagnosis of asthma, and the way I “use” (for want of a better word) the diagnosis will be very very different. It’s going to take quite a long time to work out how I live my life from now on and I’m going to have to continue to learn about autism, how it affects me and my life, and how I can best utilise my skills and compensate for my impairments to maximise my quality of life and productivity in the future. I’m already starting to adapt strategies that I’ve used for many years while coping with anxiety, depression, and bipolar disorder. I’m refining my notion of spoons (do read about Spoon Theory if you’re not sure what I’m talking about) and have already started to think in terms of “sensory spoons” and “social spoons” (thinking this way makes it easier for me to work out how much energy I have available for different sorts of activities). I’m considering how I can adapt the mood diary, which I’ve kept since my diagnosis of bipolar disorder, to include things relevant to autism – maybe how my various sensory systems are behaving, how good my executive functioning is, how exhausted I’ve been, what the state of my speech has been, how much my stimming has differed from whatever my “normal” turns out to be, and that sort of thing. I’m already certain that receiving this diagnosis is a positive thing and, although things are very difficult at the moment, I’m confident that they will eventually be easier as I adapt to my changed circumstances.

However, I was not the only member of my family who received a diagnosis last week. And I now have permission to say what it was that threw me into such a state of shock when I was told about it just six days after my autism diagnosis. I’ve been very much keeping quiet about it until I had explicit permission to mention it because we very much subscribe to Silk Ring Theory in our household, so as far as my autism diagnosis is concerned, I’m at the centre of the ring and I get to decide how to handle it and what I disclose. But somebody else’s diagnosis is entirely a different matter. However, this other diagnosis has affected me very significantly, and I hope that those who read this blog who are closer to it than I am will understand my need to mention it here.

A few weeks ago my father went for a routine health check with his doctor. Nothing very exciting – as far as anybody knew at that point he was a reasonably fit and healthy man in his 60s. Some blood was taken for a blood test, and when the results came back they were rather alarming. He saw a consultant just a few days after I received my autism diagnosis and received his own diagnosis – of advanced prostate cancer, which his consultant believes in his case will “see him off”. He then spent the next few days breaking the news as gently as he could to those of us who are close family members – my stepmother who was at the appointment with him, my mother, my brother, and me, followed by a few others. The prognosis is not fully known at this stage. There will be scans and histology and maybe biopsies (I’m not really very knowledgeable about all this stuff – though much more so than I was a few days ago). Current estimates vary between 12 months and (a “very slim chance”) 5 years (although there is always the tale of the outlier who survives much longer against the odds – it would seem that absolutely exact predictions are not possible). There will, obviously be treatment options discussed and weighed up, but the news that my father, who we’d sort of assumed would follow my grandfather into his late 90s, might well not reach 70, is a huge thing to absorb. My whole family is in shock, and my stepmother is in for a particularly hard time, for reasons it is not my place to write about here.

So, my life has been turned upside down yet again. My priorities are changing rapidly. I had hoped that after my diagnosis had sunk in, one of the effects it would have would be to go through some of the difficulties I had as a child, and also, particularly, some of the problems I’ve had with my father through my adulthood – many now obviously caused by undiagnosed autism and communication difficulties. For every event I’ve had with a boyfriend (such as that described in Mysterious Argument) there have been a dozen similar incidents with my father. I recall one from my late teens where we’d had “a fight” about something and I couldn’t explain any of it and I kept opening my mouth to speak to try to say something and couldn’t (I realise now that it was a nonverbal episode following a meltdown). There have been times throughout adulthood where communication has failed and not knowing I was autistic has meant that we have been unable to understand why things kept going so badly wrong. I was hoping to have years to go through all of this stuff and to be able to get back to the times when I was a younger child and my Dad was basically my hero, the one who was like me, and got me, and we could settle into a more comfortable relationship than has been the case through some of the more difficult years of my life.

But that now has to happen soon. I am already making plans to go to visit (he lives some distance away) and my brother is trying to work out how to organise things so that I can manage them. Considering I’m only managing to leave the flat around once or twice a week at the moment, it’s going to use a very great deal of energy. My father is, predictably, handling the whole thing by learning, and researching, and finding out all that he can. He’s taking a very practical and philosophical approach to it all. Exactly as I would have expected. One of the other reasons I’ve been silent on this blog for much of the week is that all my communication energy has been taken up communicating with my family. I spoke to my mother on the phone (she’s the only person I usually speak to at all on the phone, so that was reasonably smooth), and also to my brother (my words started to fragment somewhat, so we’ve now returned to e-mail), and my father and I have exchanged e-mails with things we hope to do together over the next few months. I hope I can find enough of the right words to say the things I want to say and to make some good memories for after he’s gone, because through all the difficulties and so on, he’s still my Dad and…

My reactions this week have been, maybe, predictable for someone six days out from an autism diagnosis. I described in Sensory Reaction how my system initially responded to the overload in my head. My husband worked only part of Monday in order to keep an eye on me, and to try to make sure I ate. Monday I basically felt completely numb. Tuesday I spent almost entirely dissociated, with no hope of any sort of functioning at all. By Wednesday my words were fragmenting and disappearing. Only yesterday afternoon did I regain any semblance of functionality, and it’s still very very brittle.

In a perfect world I would still be processing my autism diagnosis at this point, but the world is very much not a perfect one. I am, however, trying to use my father’s diagnosis as information to guide my actions (just as I take inhalers for asthma and just as I am learning to adapt my life to living a way that works for me as an autistic). I am rethinking the things I need to do in my life over the next few months and will be trying to find some sort of a balance that gives me time with my Dad, time to keep myself as well as possible, and maybe works out a way to leave some other parts of my life available to me in some form in the future. There are things I can simply drop for now and pick up later (they’re the nice easy ones), but there are some things that might not make it through because I simply can’t manage them and the option to continue in the future isn’t there. That’s just the way it has to be. Life happens and priorities change.

Diagnoses really do change lives – in all sorts of different ways.