Finding HopeAutism Dogs – The Application
Posted on November 19, 2024
It’s official! I’m getting an Autism Assistance Dog! These posts are currently quite out of date because I wanted to get well into the process before writing too much about it but now that things are really moving, there’s a lot to share!
I applied to Autism Dogs twice, first in September 2021. But a month later, I was informed that I hadn’t gotten past the application round. They got in touch though and said that there was nothing wrong with me or my application, just that they always have more people apply than they can take on every time they open up the application process; they only have so many dogs and so many people to train them.
Once that happened, I applied again in May 2023 and, this time, they accepted me and I moved onto the next round of the application process, which involved more forms and and an interview with two people who work for the charity. The main point of the interview was so that they could get a real sense of me as a person and of what I would need from an assistance dog but it also allowed them to gather more information, like whether we would be able to care for the dog, whether we could fund the training process, and so on. They had my application form so they already had a lot of information about me but the interview gave them a chance to ask more questions and for us – my Mum and I – to expand on the information we’d already given them. It also gave us the chance to ask the questions that we’d started to come up with. Going through this process, guided by autistic people and people who’ve had lifelong experience with autistic individuals, I just felt like they got me: no request or accommodation was surprising or irritating; many of my needs and sensitivities were already accommodated for; and there were regular check ins, breaks, and as much flexibility as the schedule allowed. It was the first time I’d experienced anything like that and honestly, it was amazing, if kind of surreal.
They signed off on me and so I went on to do a one-to-one video call with the founder of Autism Dogs. She was really, really lovely and we had a really long, really interesting and engaging conversation; we talked about the charity, about me, about all of this going forward, and she was very happy to officially welcome me into the program and begin the process of having me matched with a dog, provided we could meet the financial requirement of the application, which we had been planning for – especially since we hadn’t been accepted the first time but had been encouraged to keep trying.
It was made very clear early on that it’s not a speedy process, that you can be on the waiting list for a year to eighteen months. That was always fine with me because making sure that a person is matched with the right dog can’t be a simple process and, of course, I’d much rather wait longer for a better fit. If you and your dog aren’t a good match, the whole point of having an assistance dog is undermined: you won’t benefit from the relationship and support and your dog will struggle and ultimately fail to thrive as an assistance dog. I can’t imagine that it’s a situation anyone seeking an assistance dog wants to be in. As the months have passed, I’ve stood by that belief because I want this relationship to be successful and helpful to me in becoming more independent and and having a bigger life; I know that can’t happen if I try to rush the process. Plus I have multiple sensory sensitivities which ruled out certain breeds of dogs, again slowing the process because they had less dogs to select from.
We had multiple meetings – both over Zoom and in person at the Autism Dogs farm – but it wasn’t until twelve months after I was accepted into the program, in May 2024, that I was matched with a dog, a gorgeous black Labrador who is now well on her way to becoming my assistance dog.
As I said in the introduction, I’m quite a bit further down this road than the blog post suggests but I wanted to detail the whole process from the beginning with as much information as possible but in digestible chunks (as well as writable chunks) so that it doesn’t take forever to post – unlike my yearly album posts.
NOTE: Between my brain fog and a WordPress update, I lost track of what was supposed to be the next post, the next step in the journey: discussing my Advanced Tasks list and meeting some of the dogs to get a sense of which breed I would be most comfortable with. That post is now up and you can find it here.
World Mental Health Day 2024 (Mental Health In The Workplace)
Posted on October 14, 2024
Yes, my World Mental Health Day post is late but – somewhat ironically perhaps – my mental health has been so bad recently that, on World Mental Health Day itself, I couldn’t actually get out of bed or engage with anyone or anything. But I did want to share some thoughts about this day before we leave it too far behind…
I’ve been struggling with the themes for World Mental Health Day for several years now and this year turned out to be no different. When it was announced that the theme was to be ‘Mental Health in the Workplace,’ I could barely suppress an eye roll. It is, of course, a valid cause: anyone struggling with their mental health should be able to go to a designated person or department and get whatever support they need. But, if I’m honest, I feel like this is something that should already be in place, something that should fall under the Equality Act. I also can’t help thinking that mental health support in the workplace isn’t an area that an awareness day can actually create change around: that’s on each individual workplace. So, on a societal level, it requires very little work (and, in my opinion, nothing is likely to change – as cynical as that sounds).
And this brings me to my ever-growing frustration with World Mental Health Day: it feels increasingly performative. The themes and call to action are vague at best and, at this point, the day itself is just lacking inspiration and innovation. As far as I can tell, there’s no campaign, very little effort to fundraise, and – honestly – I wouldn’t even know it was happening if I didn’t have these days noted in my planner. Then the day comes around and it’s all empty, performative platitudes on social media before everyone forgets again. Cynical, I know, but that is my experience of World Mental Health Day every single year.
I also feel the need to point out that this year’s theme feels, at least, somewhat ableist: there is a massive group of people who are unable or who have never been able to work due to mental ill health and this theme excludes them without a second thought. The irony of this would be laughable if it wasn’t so depressing, considering how desperate the UK government is to force disabled and mentally ill people into the workforce – regardless of the damage it will do to this group of people. This callous, single-minded approach strikes terror in the hearts of every single person I know who is part of this community. This is an area where a focussed, passionate campaign from The Mental Health Foundation could actually do some good. Time and money and effort put into improving the mental health services and support systems, and therefore the mental health of those not currently able to work, would allow so many people to work, whether it be after time off or for the very first time.
Before we go any further, I do just want to note that, personally, I think that our current capitalist model of work is abusive and exploitative and damaging and that there are so many other systems that would benefit both the individual and the industry they work in but, for the sake of the theme and this post, we’ll continue on the basis that it isn’t as horrific as it is (otherwise I will literally spiral into a pit of despair).
The point I’m making here is that I don’t know anyone who’s been unable to work due to mental ill health, whether that’s for short or long periods of time, who doesn’t want to contribute in some way, whether that’s to a specific workplace or industry, to society as a whole, or simply to the needs of their family and community. The number of people on benefits who don’t feel any inclination to work or who are faking in order to get benefits is a lot smaller than we were brainwashed – by The Conservative Party – to believe. I fully believe that human beings want to help and create and contribute and, if the mental health services were better and allowed more people to access support, more people would be doing those exact things.
But, of course, helping those with life-altering mental health struggles is a lot harder and requires a lot more time and effort and money and, at my most cynical, I feel like these areas are being avoided by organisations like The Mental Health Foundation because they require a lot of all of those things. Real change requires more than downloadable social media graphics and tweeting clichés.
I’m tired of the performances, of the empty promises. Maybe it’s my autistic, black and white thinking but I just don’t understand why improving the mental health services isn’t a priority since ANY improvement would make a significant difference. This seems to be the most obvious, most efficient solution, even if it isn’t the fastest. Especially, as I said, ANY improvement would create positive change. And the more work that goes into these services, the more people they can help and, therefore, the more people there will be returning to the workplace (given that that seems to be the government’s ultimate priority, whereas mine is simply that more people are able to access support and hopefully improve their mental health, maybe even recover from certain mental illnesses). I’m sure it comes down to money – because it always does, doesn’t it? – but this seems like such an obvious solution with such clear long term benefits. I just don’t understand and I’m tired of workplaces, healthcare professionals, organisations, and government caring so little about such a big group of people that they are responsible for.
And because this has been a very cynical and depressing post, here is a picture of my dog – we all know how good animals are for our mental health, even if only for a momentary boost…
Seeking Help For Chronic Pain (Year Three)
Posted on July 6, 2024
It’s been more than three years since I started pursuing support for the pain I experience and still I have nothing from the NHS. I go to hydrotherapy as often as I can, although I’m still waiting for the second NHS Hydrotherapy appointment to assess the exercises as I feel I need a harder routine and have been waiting almost six months for that. It’s helpful and I do often enjoy it but I’m still in pain a considerable amount of the time. My GP has said several times that she’ll reach out to the Pain Clinic but we still haven’t heard from them; I haven’t had contact with them since the appointment in November 2021.
This post spans from April 2023 to March 2024.
SINCE LAST UPDATE
Since the last update, I had periods of unpleasant pain but nothing worse than my usual levels of pain. I usually experienced it in phases where it got bad and then receded to all but nothing. I had days where I felt like the only problem was muscle weakness rather than actual pain (despite the hydrotherapy) but most of the time there was some kind of pain in some part of my body; I just didn’t always notice it because I’m so used it at this point. Sometimes I forget to take painkillers because I don’t recognise that what I’m feeling is pain.
JUNE 2023
Everything was normal – I was still waiting for an appointment with the NHS Hydrotherapy Department and my GP was still chasing up the Pain Clinic – until I managed to seriously hurt my back. I don’t know what I did. I really don’t. I was sitting on the ground, playing with my neighbours puppies, and then, when I tried to get up, my back was so painful that I could barely move. At first I figured that sitting on the ground without any support for my back had just resulted in a strained muscle or something and that a few hours on my heat pad would sort it but hours later, I still thought I’d collapse or scream or throw up if I so much as turned slightly to one side or the other; it was horrendous. I think it was honestly the worst pain I’ve ever experienced in my life; at the very least, it’s in the top five. It was worse than the cracked rib, no question.
Again, I thought a few days of the heat pad and painkillers would, at the very least, get the healing going but almost a week later, I was still barely able to move and the muscles spasmed several times that resulted in me sobbing on the floor, unable to get up – actually physically unable. We had to call 111 several times because of the days and times of those moments (and because I genuinely felt like I couldn’t move and therefore get up and go to the doctor). I was taking my strongest painkillers but they weren’t making that much difference and I could only take them for three days at a time; I dreaded the days when I couldn’t take them. Plus my sleep was terrible because the pain woke me up every time I turned over.
Eventually I had to go to the doctor and he was convinced by my pain straight away, given that I was hobbling like someone who’d just celebrated their hundredth birthday. He was understanding and sympathetic and recommended medication for a few weeks before reassessing. He ran through the options (I’ve already tried most of them and found them ineffective) and almost prescribed me Tramadol (a drug my arthritic dog used to take, which amused me) but then he discovered that it would’ve interacted badly with my antidepressant, Phenelzine (something I’d already assumed before he could even look it up). So he gave me a combination of weaker ones and said that, if those hadn’t worked in a couple of weeks, then we would revisit and try something different.
I had to keep my movement extremely limited but I also used a back brace when I did need to do things. It wasn’t the most comfortable thing but the support allowed me to do a bit more and live some life that wasn’t confined to the sofa. The pain killers helped somewhat, at least at the peak of their effectiveness, but it wasn’t until a physiotherapist we know suggested a TENS machine that things really changed (this was about three weeks after the pain started). We attached it to my back, turned it on, and the relief was so overwhelming that I thought my knees would collapse under me. The pain was gone. Well, gone where the pads were attached and it was amazing. It’s not a perfect system – although, if I bought a ridiculously expensive one, it might be – but with that attached to me, I could move around, I could lean, I could actually do things. And I wasn’t constantly exhausted and miserable from the pain.
JULY 2023
More than a month after I originally hurt my back, it was still troubling me, although not at all to the same degree as it had been; between painkillers, the TENS machine, and slowing moving more and more, I got back to almost full movement without pain. I still had to be a bit careful about stretching, and twisting, and lifting but, for the most part, I was back to normal – my normal, at least. Because my normal almost always involves some level of pain in some part of my body.
It was around the month mark that I got back to swimming and hydrotherapy and I was vaguely appalled by how much stamina I’d lost in the time since I’d last been going to the pool consistently (which had almost been two months between the back pain, my trip to Germany, and a closure at the pool). I had to work really hard not to overdo it and go back to my old routine straight away, building up again, but it was extremely frustrating. My work in the pool did aggravate my back a bit and it took some TLC after each session but very, very slowly, things started to get back to normal.
In mid-July, I also started physiotherapy, trying to build up the strength and stability of my muscles, especially my core, as is recommended for Hypermobile Ehlers Danlos Syndrome (she said some really interesting things about hypermobility – specifically as it applied to exercise but it was also interesting in general – and I couldn’t wait for this post to talk about it so I posted about that here). It felt like a somewhat humiliatingly ‘easy’ routine to be completely exhausted by but if it’s going to help with the pain, help me swim more, help me survive the Taylor Swift concerts next summer… I’ll do whatever it takes. The early days of the exercises were tough but it was kind of exciting, knowing that I was moving forward bit by bit, slowly getting closer to my goals. I can’t remember ever feeling strong or in complete control of my body and while I don’t feel that way at this point, I can’t help the little surge of hope that all of this will get me there one day.
I also read about a charity swim in September and that got me really excited. I swear, almost all charity challenges are fitness related – always charity walks or runs – which I find deeply frustrating because I want to help and be involved but I just can’t handle those; I can’t even walk very far without it feeling like there’s glass grinding in my joints. But a swim is perfect. And likely because it’s in aid of a charity, it’s very accessible, the idea being that you choose the length of swim that will challenge you without pushing you to an unsafe or uncomfortable point (one of the lengths is getting in the pool, which I think is fantastic, because, for some people, just getting in a pool is a huge challenge). During my next session at the pool, I tested myself to see how far I could go before it felt like I might regret trying to do more, like pushing harder might be problematic, and that turned out to be just over 400m. I don’t think that’s all that bad, considering I haven’t exercised consistently in over a month. So I could do the 400m length swim in September easily; the next goal is 800m but who knows what will happen between now and then…
AUGUST 2023
I continued working on my hydrotherapy and physiotherapy (although I had to take a week off at one point when an ear infection absolutely floored me – pain, deafness, and balance related problems made it all but impossible to walk, let alone do any sort of coordinated exercise). I had my second physiotherapy appointment and that went well; we increased the resistance on some of the exercises and added a few more. My muscles started twitching after I started physio (which initially really freaked me out) before subsiding and that started again with the increase but now we know why it happens, it’s just mildly irritating.
I also tested how far I could swim, about a month after that first experiment, and I managed almost double my original distance and managed it easily; I could’ve gone further had I not run out of time at the pool. I’m really proud of that progress, of the progress I’ve made in both. It’s been so long since I could even do this level of exercise and I can see it translating to the rest of my life, even if it’s slow going.
I wrote about this here but I was also diagnosed with Fibromyalgia. I won’t rehash it, especially since I’m still not sure how I feel about the whole experience, but I don’t want to ignore it, given that one of the main traits of the condition is pain. It’s just that I don’t know how the diagnoses of hEDS, Chronic Fatigue Syndrome, and Fibromyalgia fit together and, after everything, I’m so deeply wary of (and triggered, to various degrees, by) doctors. Anyway. In theory at least, that’s part of the picture.
SEPTEMBER 2023
September was a bit of a wild ride that I could’ve done without on the whole. I had ongoing shoulder and elbow pain (no doubt due to my repetitive hair pulling, excruciating lower back pain for over a week (which almost consistently disrupted my sleep, waking me up every time I tried to turn over, so I was tired and unproductive and frustrated too), and several days of awful knee pain, although that was probably my fault: I think I overworked it one night when doing my hydrotherapy exercises and, had I taken the next day to rest it, it probably would’ve recovered quickly but I ended up going to London (and having an almost meltdown on the street), which I’m sure only made it worse. So that wasn’t great but it wasn’t the worst it’s been so I’m not complaining (much).
I had my second hydrotherapy appointment and the hydrotherapist was both impressed and pleased by my commitment and my progress, which was very nice (and encouraging to hear – sometimes it feels hard to tell whether anything is actually changing so it’s comforting to hear from someone who really knows that I am). We discussed the exercise I’d had to cut because it hurt my arm and she gave me a new one that had the same final result but wouldn’t aggravate my elbow joint. Then she gave me about ten new exercises to work on, which I’m excited to get started on. They’ll be working different parts of my body so it’ll be interesting to see what that feels like and what that means for my stability and stamina (if I’m able to tell). I don’t get any more appointments so hopefully these two exercises will keep me going, at least for the foreseeable future. Given my history, I wouldn’t be surprised if I was back at some point with a different problem that needs support; my hEDS is just the gift that keeps on giving. During the rest of my pool time, I’ve also managed to swim a kilometre and do it pretty easily. I thought a lot about the charity swim I’d been planning to do and eventually decided that, instead of the one I’d originally planned to do, I’d rather do one for Mind, for World Mental Health Day. That would be a really meaningful way to celebrate my progress and do something that helps a cause really close to my heart, especially since I can’t do the more traditional charity runs.
I also had another physiotherapy session and my physiotherapist was also really pleased with how I was doing; she commented on it the second I walked into the room, that I was standing better. As I said, I find it really hard to tell if things are changing so the fact that she could see it that immediately was good (and interesting) to hear. We talked about the pain in my shoulder and elbow and she massaged both, which felt amazing; having felt both of the joints, she said she thought I probably had Bursitis in my shoulder and Tendonitis in my elbow. We went through my exercises and she gave me a new exercise in place of one that was hurting my elbow. She also gave me a couple that would strengthen my shoulder and elbow. I started doing them straight away and I could definitely feel them working!
The only other things of note, I guess, are that, one, I had all of the blood tests done that the doctor (the man who’d diagnosed me with Fibromyalgia) had requested and, two, I had my COVID jab (my fourth vaccination, I think), which had my arm hurting for several days. I had to slow down on the physiotherapy (less so the hydrotherapy) but it wasn’t long before I was back to my normal routine.
OCTOBER 2023
I started October, focussed on swimming in order to do my 5km for Mind: the plan was to swim 1km per swim over the course of the week leading up to World Mental Health Day. And then, suddenly, it was time to do the thing. After the work I’d put in, it actually wasn’t too difficult (although I gratefully took some time to rest afterwards) and I really enjoyed it. And family, friends, colleagues, and strangers generously donated over £600! I’d like to do another one at some point but I don’t want to push myself too hard and I really don’t want to take advantage of my community by repeatedly asking them to donate when the cost of living crisis is hitting everyone really hard. So I’ll choose my event and time of year carefully.
As much as I loved the swimming, I had really missed my hydrotherapy exercises, which I’d had to neglect to build up my stamina and then get the 5km done in five different swims. So it was really nice to get back to them and build in the new exercises I’d gotten from the hydrotherapist. I started feeling them in my core straight away, which was very satisfying: it’s proof that the exercises are working the muscles they’re supposed to be.
NOVEMBER 2023
I continued with my physiotherapy and hydrotherapy, although pain in my hip did make it hard and I had to reduce the amount of exercises I was doing. But I did finally get some compression socks to help with my POTS and I definitely felt the difference when standing or walking. They’re not life-changing but I’ll take anything I can get.
Otherwise, things have been okay, although I did fall down while walking along the South Bank in London. It’s all concrete so it was a pretty hard fall but, at this point, I’ve learned how to fall so that it doesn’t do much damage or hurt too much; usually I just feel a bit shaken up. I was with family and several people came over so I was well checked over but I was fine.
DECEMBER 2023
I was having serious pain in my back, on and off throughout the month, which did limit my ability to exercise – and to just move at all. The exhaustion of being in pain made moving my body hard too; it wasn’t a fun time. Between that and Christmas, New Year, and the associated family commitments, I ended up accidentally taking a couple of weeks off anyway.
JANUARY 2024
In the new year, I slowly got back to my swimming, hydrotherapy, and physiotherapy – with an updated routine. I also started to do a bit of indoor cycling, although that was a lot harder. But it’s all, hopefully, going to help with building up my strength and stamina and stability. It did all became much harder work when I changed the medication I take for POTS, switching from Propranolol to Ivabradine because all of my symptoms got worse: I was constantly out of breath and shaky, unsteady and exhausted. It was a rough changeover. I also fell down while in London again. This time was on grass so it really wasn’t a big deal physically: it didn’t hurt at all but I do always feel shaken up, like my skeleton has been rattled around inside my body. It also makes me feel less secure, less in control of my body, which isn’t a nice feeling.
I was still struggling with pain in my back, as well as pain in my hips. Oh, and my elbows. It stopped me from doing my exercises on and off for several weeks, which was frustrating. I’ve told both my doctor and my physiotherapist but no news yet on whether there’s a problem – other than general chronic pain – and what to do about it.
FEBRUARY 2024
The back pain only got worse and was dramatically limiting my exercises as well as my general movement; it was also waking me up at night. I was almost constantly on the only painkillers that seem to make any difference but I can only take those for a few days at a time before I have to take a break. That really sucks because then I undo all of the good – all of the recovery – that the time on painkillers has allowed me to do. So it’s a never ending cycle without any progress. The physiotherapy and hydrotherapy that I did manage to do were really hard and not enjoyable at all.
So it’s been a year of rough ups and downs, steps back and forward and back again. I’ve had some more support this year but I feel like the pain has been worse and consistently so, particularly in my back. I don’t really know what to do at this point but nothing seems to help it. I was hoping things would be better by now (especially because I want to really be able to enjoy the Taylor Swift concerts coming up) but they feel worse, at least to me, than they did at the beginning of the year.
Finding Hope 