Hospital Disaster

Over the past couple of months i have been having numerous hospital appointments and then had an operation. It was to remove 4 teeth (3 wisdom teeth and one other tooth).

It seemed to be one disaster after another. Although the operation was successful it was not without drama, trauma or stress. They really did not seem to have a handle on how to deal with Autism at all and has left me having nightmares about it.

It all really started with a mix up with hospitals. I went to Fairfield Hospital to see the surgeon and have xrays done. I then had a further appointment for MRSA screening as part of the pre-op before the operation, I turned up at Fairfield hospital to be told the actual appointment was at North Manchester hospital. So this test was rearranged and i went to North Manchester Hospital, to have the test done and was given an operation date and letter saying the Operation would be done at Fairfield Hospital. It really didn’t help that all the letters came from Fairfield hospital, including the one for the appointment at North Manchester Hospital. All these appointments happened within weeks. Not very helpful and quite an information overload.

I received 2 letters in the post regarding the day of my Operation. The First one said I had to be at the hospital at 12 noon for an afternoon operation and the second letter arrived on saturday afternoon before my operation on the Tuesday (monday was a bank holiday) to say I had to be there at 7:30am for a morning operation. Due to the Time of arrival and the bank holiday i couldnt contact the booking department to find which time i was meant to be there for, so we took the 2nd letter as the most up to date and went to the hospital for a morning surgery.

I wasn’t allowed anything to eat or drink from 11pm the night before. We arrived at The hospital and checked in at 6:45am. The little waiting room was very hot and stuffy. The receptionist behind the desk was eating her Breakfast and drinking cups of tea in front of patients who were nil by mouth which I thought was quite mean. I was already quite nervous and anxious before arriving at hospital and at around 11am nothing had happened and was still sat in the waiting room. I went up to the receptionist to find out if they had forgotten about me and after she looked into it i was told i was not due to have my operation until later in the afternoon and apologised that no one had told me. During the time we had been there we had seen other people being called in and some already coming back from their operations. At around 11:45am i was on the verge of having a major panic attack as i had been trying to hold it all together since the night before. After discussing it with my partner i decided that i was no longer in a fit state and really didn’t want to have the operation that day, I had reached my limit. I wanted to cancel it and rearrange for another less stressful day. So i went to speak with the nurses and asked to cancel and rearrange, i was asked why and i had explained i had autism i’ve been waiting for almost 5 hours with nothing happening, hadn’t eaten or drunk anything in 12 hours and was starting to have a major panic attack. The nurses really didn’t want me to cancel and tried everything to get me to stay and said they would ask the surgeon if i could go next instead of having to wait until later. I really did feel rail-roaded into having the surgery done.

The surgeon agreed to change his schedule and I was then next in line for surgery. I met with nurse’s, the anaesthetist and the surgeon. I was asked multiple times about my current conditions and medications, which I explained about my autism, PTSD, anxiety and depression. I was then taken down to the operating theatre around 12:40pm.

While I was in theatre my partner was sat waiting in the waiting room, he received a phone call from North Manchester Hospital asking him where he is and could he come into hospital as there was a problem with my surgery. He explained he was sat in the waiting room of the day surgery unit, so they said they’d be down to collect him. Around 10 minutes later he gets a call back as they can’t find him and he explained he was by the reception desk of the day unit at Fairfield hospital. For some reason they were looking for him at North Manchester Hospital. The switchboard was at north Manchester so they had assumed the surgery was being done there.

Once the confusion had been cleared up, A staff nurse came and collected him and took him into the operating theatre where I was and he was horrified to see me being forcibly held down and me “fighting” to escape. There was nurses holding my arms and legs down and others trying to keep the oxygen mask over my face. He explained that i had autism and they needed to stop as they were doing to much at once. He also explained about my medication and my anxiety, depression and what i had been through that morning. They hadn’t been told any of this, despite me confirming it numerous times that day. I remember bits of this as I started to come round during the operation. Apparently I had a bad reaction to the anesthetic due to the medication I was on. So they had to bring me round during the operation in order to give me a different type of anesthetic. My partner was told verbally what anesthetic I had a bad reaction to and was told that in future operations I should not be given it, however this was written down.

The operation which should have only been half an hour turned into a 3 hour one, once done I was taken back to the day unit. Instead of being put onto the ward to recover with the other patients. I was put into my own room in order to come round in my own time. Everything seemed to change at that point, myself and partner were treated with ‘kid gloves’ lots of tea and extra biscuits. Everything done at my pace. They seemed to be falling over themselves to be helpful, it seemed like everyone knew something had gone wrong and were trying to make up for it.

After hours recovering I was discharged and sent home. It was days later, when the swelling had gone down that I could see there was a stitch in one of the wounds and a week later another stitch came out.

No one had told me I had stitches put in (how many, how long they’d last etc), I wasn’t told by any hospital staff what had happened in theatre or what anesthetic I need to avoid (hopefully this will be on medical notes). As I will need to make people aware of this in future. Now feeling left very let down, traumatized and have loss quite a bit of trust in hospital.

Throughout my treatment from my dentist, to the consultant, the pre op appointments and the morning of the surgery. I told everyone I was autistic and had other health issues, but it all seemed to be ignored on the day.

There are however 2 silver linings throughout this ordeal that I can take comfort in. Firstly, the painful and troublesome teeth have been removed and secondly, how my confidence has grown (through the help of life coaching) in order to stand up and say I wanted to cancel and rebook, despite being forced into it, previously I would never have stood up for myself in that way.

So all in all a disastrous hospital trip with NHS staff needing a lot more autism recognition and training. Being overwhelmed with information and dates at different hospitals and lasting nightmares about being held down and ignored however I will seek treatment for it and will give feed back to the hospital as no-one should have to endure what I was subjected to. It would be difficult for a normal person to deal with let alone someone on the autism spectrum.

Routines

After getting my formal diagnosis of Autism in 2018 I was referred for ‘Life Coaching’ in order to help with my confidence and to be able to have more understanding on how i see the world and to try and make sense of how my view is different to other peoples and to gain more understanding of how people react to it.

The Life coaching will be done in 10 sessions every 2 weeks. I’ve only had my first session and The life coaching is trying to get me set up on a proper routine. I’m finding it very tough and gruelling, to be honest I’m struggling. Everything is timed and planned out the day before, from appointments to bedtime and what time to wake up, right down to set times for brushing my teeth. Other than making me more tired and stressed out i’m not seeing any benefit or real reason for it.

Having autism, fibromyalgia and chronic fatigue syndrome (plus a number of other physical and mental health issues) I have always been told to do things at my own pace and when i’m ready. Trying to force myself to do things at set times is just making me depressed and when i dont complete a set task at the set time. I feel guilty and feel I’ve let not only myself down but the life coach and others to. I don’t know if i’m putting to much pressure on myself or its my autism and i’m being overwhelmed. Either way i’m struggling. Maybe its too much too soon.

Hopefully the next session will be able to tweak things and help me out about. I know the life coach said it would be hard and i’m willing to try and do it, but my body is protesting. Doesn’t help that i’m still doing Physiotherapy at the same time.

Understanding – At last

After years of complaining of pain and numerous trips to Hospital. I was referred to see the Rheumatology department at North Manchester Hospital. Saw a very nice Doctor who really did know what he was doing and asked alot of in depth questions. It was amazing for someone to actually understand what I had been living with and going through for years.

Was poked, prodded and examined.

The Doctor has diagnosed me with the following:

Fibromyalgia
Sleep Disorder
Chronic Fatigue
Irritable bowel syndrome (IBS)

He advised that all of these along with my Autism, Hyper-mobility and
psychological issues (Anxiety & Depression) are all intertwined.

They are Chronic conditions with no known cure. So is now a process of how to manage the symptoms.

I am being referred to Pain Clinic, Physiotherapy, Hydrotherapy and
Psychiatry. He will be writing to my GP to request that I go on sleeping
tablets and to increase the medication dosage that I’m currently on as
well. They took some blood for testing to cover the bases, but will not need to go back and see that department again.

There was a student Doctor observing my appointment and had apparently never seen someone whose joints where so bendy. So least I’m helping future generations of Doctor’s learn if nothing else!

It really is a genuine relief to get these conditions diagnosed and have someone to listen and understand. I had only been expecting a single diagnosis of Fibromyalgia, so to come away with 4 different conditions was not only a complete shock but also a validation of the fact that I really am not very well. I had thought that all the symptoms I had were normal and the pain I experience is what everyone else feels. It wasn’t until I had been diagnosed with Autism that I have begun to realise that it wasn’t normal.

Its strange having Autism and not feeling, experiencing and expressing myself as other people would. Its very hard to explain, what is normal for me is not normal for the wider community and vice versa.

I have tried to express myself and tried to tell people that things were ‘not quite right’ for years but I have either been bullied, fobbed off, taken advantage of or just plainly ignored. So to prevent myself from having to experience those again I just shut down, closed myself off and told people what they wanted to hear. However since my Autism diagnosis I have been learning to try and express myself better and this has led to these new conditions to be diagnosed to join my long list of other health issues. Now it’s a case of learning how to manage the symptoms and conditions.

Over the years I have learned to mask and hide things and to just keep pushing through them. Now that the health professionals are telling me that yes – what I am feeling and experiencing is real, and not to try and hide it or bottle it up. I worry that people will think that I’m making things out to be worse than they are because they weren’t an issue before.

It’s a lot not only for me to take in, but for my friends and family. At least we have some understanding of what is going on.

Changes?….

I’m rediscovering the world and myself since my autism diagnosis. Learning a lot about Autism (still a lot to learn) and finding that lots of my little quirks are often ‘Symptoms’ of Autism. I think i made need to change the name of my blog, as its no longer a road to recovery. I had thought that I had nervous breakdown in 2013 and have been trying to get back to how i was before then. Since my diagnosis I’ve discovered that how i was being and reacting to a lot of things in life was me ‘masking’ or ‘camouflaging’.

I’ve always known that I see the world differently to others and previously when i have said things I’ve either been ridiculed or put down. So haven’t said anything for years and copied how other people react, but now I need to learn myself and the world all over again and to accept and allow myself to feel the way I do.

So Maybe it I should rename my blog “Rediscovering the world” or “Me and Autism”, “My autism journey”.

I should have my final autism assessment by July 2018. Which will make it a year and a half to fully, pin down the challenges and hardships I face, hopefully making things a bit easier.