There are multiple conditions that are regularly associated with autism spectrum disorder (ASD), conditions like attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), Obsessive compulsive disorder (OCD), Anxiety, Depression, Gastrointestinal (GI) problems, sleep disturbances and epilepsy.
These are all well covered disorders and are widely associated with ASD. I, myself have had my share of GI problems, sleep problems, OCD and anxiety. I currently suffer with anxiety and sleep problems, I seem unable to get a good nights sleep, always falling asleep late and waking up early, not helped at all by my routines that I go through on a daily basis. Then I seem to be unable to stay awake all day, always seeming to nap somewhere, usually falling asleep in the afternoon at some point.
These are all well covered and widely suffered by ASD, but what I want to talk about are the conditions that we suffer with that are not associated with ASD, and are just regular conditions that many people suffer with but that are made worse by having an ASD.
I have had my share of such things over the years, I had my gallbladder removed and I’ve had around five or six operations for different things over the years, but the condition I now suffer with is my worse to date, not only in the fact that the condition can’t be cured, but also that it is a massive problem with my ASD.
The condition I have is Heart disease. I was diagnosed with Coronary Artery Disease (CAD) in 2013, to date the associated conditions that I have been told I suffer with due to my CAD are, angina, high cholesterol, vitamin d deficiency and asthma. The asthma causes me to have shortness of breath, even more so, when coupled with my heart for everything else, it’s a series of medications. I take on average 13 tablets every day and I have three sprays as well, two to manage my asthma and the other one is my glyceryl trinitrate (GTN) which I take for angina.
I have had four or five angiograms, which is where they thread a wire through an artery to see how badly blocked your arteries are. If they find a blockage then they fit a stent, which is like a mesh cage that they open up in your artery where the blockage is to unblock it. I now have five stents fitted but I still have on going problems.
I, on a regular basis have chest pains, and the thing they don’t tell you about heart disease is that you become hyper sensitive to chest pain, and when I get it, I can’t help but wonder if this is the beginning of another heart attack. I had my first heart attack in 2015 and shortly after had a Magnetic resonance imaging (MRI) which showed that I had done some damage to my heart, when I had my heart attack.
Now every time I get chest pain I wonder if it’s the start of another heart attack or not, and if it is, is it going to be a bad one, the one I won’t recover from. Now as I said I have become hyper sensitive to my chest, every time my heart runs a little slow or fast, I feel it. If I get chest flutters, double beats or any abnormalities, I notice, and all of my chest pain starts out with a mild sensation in my chest, and builds and gets worse and worse until I think, right time I need to get to hospital. This is feeling quite bad now it could be another attack.
At this point I or Leigh calls for an ambulance. I take tablets called beta blockers that slow my heart rate down so that my heart isn’t having to work as hard. My resting heart rate because of this usually sits around 54 or 55 beats per minute (bpm). But I have had my heart rate as low as 45bpm but if it gets that low, or any lower I notice. This is one of the occasions that my chest starts to feel like something may be wrong. The lowest I’ve known it to go when I’ve been at home, as opposed to being in hospital is 39bpm. It can recover from this and get back to normal you just have to wait it out, and again if it gets worse call an ambulance.
Now calling the ambulance is the start of my main issues with my autism. As I’m sure you can understand having paramedics all over my house, a house that I usually don’t have any guests in is very anxious for me, the worse I’ve had, was once, I had three ambulances attend me, one was a rapid response paramedic that came in a car, the other two were normal ambulances. As I understand it the reason for the second ambulance was that, either the first one needed some piece of equipment that was on the second ambulance or that they needed someone who was trained in something that the other paramedics weren’t trained in, either way there was 3 ambulances and five or six paramedics.
Having this many people hovering around me, all looking at me while I was being examined just made my chest pain worse. Every time I get anxiety, I feel it in my chest and having so much chest pain is worrying, I don’t make too much out of it, but just about everything I do affects my chest and my breathing. Shortness of breath is a daily issue for me, and Leigh and Juno both worry about it and I really wish they wouldn’t. Although I keep most of my chest pain to myself and say nothing about it, I always will tell them and say whether I need them to just be aware or call the doctor or ambulance.
When the paramedics are done with their examination even if they think that I’m OK they still want to take me to hospital as I have such an extensive history of heart problems. So up I go then things just get worse, to begin with I always carry my heart file, which is a file filled with all my important admission papers, discharge letters electrocardiogram (ECG) and anything else I think is relevant, as where I live, I get seen by two different hospitals and one has all of the paperwork they need and the other has none.
The two in question are Papworth hospital which is where I go for clinic appointments and where I have had all of my angiograms done and all of my stents fitted, but when I go to hospital by ambulance I usually end up at Addenbrookes hospital which have no paperwork and never seem to know what’s going on and carrying my file saves endless time and confusion. Add to this the fact that I have been rushed to hospital by ambulance around twenty times, so you can see this is quite an issue.
Along with my heart file, I also carry a list of medications and the times I take them and a hospital passport, which if anyone doesn’t have one you should get one, you can download them from http://www.autism.org.uk/about/health/hospital-passport.aspx this is a document that you can download and fill in, and state any issues you have, how you would like to be treated, how you communicate pain and so on, and is defiantly worth getting, and whenever you go to hospital make sure you get someone to read it. What I’ve found works best is putting up with going through A+E as best you can, having someone on hand to keep telling people what to do, and not to do, works pretty good for me, this is Juno who always tells them what’s what and will complain to anyone who doesn’t listen.
I have a hard enough time going through A+E but it is helped by Juno’s intervention, but my real problems start when I’m put on a ward as this is when I’m expected to be in a room with four other people who are snoring, moaning, talking to one another, there are machines beeping everywhere and its is just too much sensory information that I can’t handle. I get around this as much as possible by spending my entire time with headphones on.
Then there is the problems that I have with nurses getting my medications wrong, which is why I have a list so that they can read it instead of me having to tell them, as they make such a mess of my medication that coupled with my very high anxiety from just being in hospital, it tends to push me just a little too far and I get frustrated with them, they do let me self medicate some times which helps.
On occasions, I have been placed in a side room, which helps no end as I have total privacy, no noisy patients or beeping machines. It’s the only time I can actually relax in hospital and take my headphones off, as I even sleep with earphones on so I’m not disturbed, and if I get woken up in the night and my music has stopped but I can still hear noises, I just put my music back on and try to go back to sleep.
All in all being in hospital is the one part of my life that is still out of control, and not at all how I like it, being in a side room every time would go some way to helping, but that is very unlikely to happen any time soon, and it means I’m so happy to be going home that I will say I’m feeling better than I am, just so that I can get out of there and back my nice quiet controlled peace of my own house.
This will always be an issue for me as I have reached a point where there are no more places to stent, unless I have any new blockages but the ones I have at the moment, either have all the stents that they need or are not able to be stented, and that other than trying to treat it as much as possible with medication for now, but if it gets worse or I have too many problems, the only treatment left is bypass surgery, which I’m not looking forward to.
So until then I shall carry on putting a brave face on it, trying to live as normally as possible without having people treating me like “I’m fragile”, and me going back to not saying anything until it is absolutely necessary, to stop people worrying as much and hoping that I at least have another twenty or twenty-five years left