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.

No gain without pain

Been a long time since i did an update, mainly to be honest because I have been very overwhelmed. Have had appointments and hospital trips weekly.

Fibromyalgia – Been going to Fairfield general Hospital to their physiotherapy department to take part in ‘Pain Management Sessions’ has left me extremely sore and in lots of pain in places i didn’t know could hurt! I have been doing lots of different exercises, it is hoped that because my body is always in pain by doing these exercises it will help train my nerves and mind to recognise that I’m not doing any damage and there is no reason for them to send pain messages. it does seem very counter productive. Fibromyalgia causes widespread pain and doing exercise makes it worse, but hopefully it’ll improve my symptoms and pain levels in the long run, but right now i’d just settle for a single day without pain. I would say I used to be very active, but lately just doing the Washing up is killing me. all these exercises dont help with my Chronic Fatigue syndrome either. I feel like a zombie!

Autism – I have finally received my referral for ‘life coaching’ it is very early days but it looks promising although will be quite hard. It’s a 4 month programme and will hopefully improve my confidence and me learn new life skills that others take for granted. This will hopefully help me deal with situations and my autism without having a meltdown.

Mental Health – All the medical professionals that are trying to help me all agree that i still have Issues with the events of 2013 and that i did to work through that trauma. I Was referred to Bury Healthy minds for more counselling and Cognitive Behaviour Therapy, however i have had to stop this while i go through the Life Coaching with the Autism team. As its felt that working on 2 types of therapy will not be helpful and could end up being confusing.

Surgery – I’m due to have surgery to have 3 wisdom teeth taken out. This will be in hospital under anaesthetic. Not looking forward to it, but will be good once done as it will stop some if not all of the dental pain i have and will hopefully stop any more infections.

So everythings a bit all over the place at the moment. It is affecting my depression and getting overwhelming but i’m trying to struggle through. Some days are better than others.

Where to start?

Argh! Don’t know where to start or what to do for the best. I have so many different issues both physically and mentally that need addressing. I have noticed however all these issues overlap and interact with one another. The way the mental health team and the GP work is to focus on one issue at a time. Which in theory would be a good idea, but by doing this its causing different issues to get worse or has unintended consequences.

I have just finished an ‘Anxiety group Workshop’ course of treatment. To be honest I think it made things worse than it did in actually helping. It was good to find out and hear from others that they were experiencing the same anxiety symptoms as I was (although for different reasons) so I learnt that I wasn’t alone and that I shouldn’t be so scared of the symptoms of anxiety. But it did show how bad and deep my depression was, we had an exercise where we had to challenge ‘negative thoughts’ and turn them into positive ones. For example I’m nervous of going out of my flat. “Something bad will happen if I do” so we had to change it into a positive thought “something good will happen if I go out” but I found that although I could make up something and change it into a positive I didn’t actually believe it and just made me more depressed.

Things that need to be sorted:

Depression – Have had depression for around 15 years, It comes and goes but is always there. I was in an abusive relation for 6 years, in a job that i was constantly bullied in for 10 years. A lot of people have taken advantage of me and my good nature, which makes trusting new people difficult. Have struggled with coming to terms with my sexuality, and struggled with my disabilities – Dyslexia, Hearing loss, musculoskeletal issues, mental health issues. and often depressed about money. Feeling low increases my anxieties. I have been suicidal and don’t want to fall back into that.

PTSD – Still getting flashbacks and nightmares of the events in 2013. This increases my anxiety and depression.

Anxiety – Because i’m anxious all the time and have physical symptoms (sweating) and panic attacks means I often don’t go out, makes me feel guilty and stops me from doing the things i used to enjoy and this makes me depressed.

Health – Due to musculoskeletal issues I’m constantly in pain, which makes my mood low, I tend not to go and get anxious that if i do go out i’ll be in pain or make it worse and i’m not in the right mental state to face surgery on it. I’m on 13 tablets a day, which i know is a lot and proves to me everyday that i’m unwell and increases my depression and my anxieties. I’m very conscious of my hearing aids and how people might react to it.

It’s only a brief description of the things i need sorting, because theirs lots more involved and i’m not comfortable sharing or bringing up everything at the moment, hopefully will give people an insight into how everything is interlocked and overlapping. So when your focusing on one single issue the other issues get worse, and its like taking one step forward and 2 steps back. GP wants to know how i want to move forward with my treatment and what i want to focus on, but i really don’t know as everything is connected. Nothing is worse than anything else, they are all as bad as each other. Ideally would need to work on all of them at the same time to slowly reduce the effects but the Health system doesn’t appear to be set up to accommodate that.

Health Update

Health Update:

CBT: (Cognitive Behaviour Therapy)
Had my first (and last) session yesterday. They are unable to help at the moment due to physical issues and high pain levels. As part of the CBT process involves mobility and as I’m in pain it will apparently distract me. So have to get my knees sorted before they will work on my mental state. However surgeons won’t help till my mental state is better. Catch 22. Waited 12 months for this to be told no, had it happened earlier i might have gotten it done.

Physiotherapy:
Went to physio today. Very painful. Apparently I have issues with my hips to add to my knees and feet. They are weak and rotating my legs more than they should. Been given exercises to complete over the festive period and have to go back first week of January.

GP:
Doctors keeping my current meds the same but given me more pain killers. Takes my total of pills to 14 a day.lol

More Health issues to fight!

Been to the Musculoskeletal Clinic at the hospital.

Feeling very sore after having my knee poked, prodded, pulled and stretched. My knee cap isn’t fitting in the groove of the knee joint. My Calfs muscles are not in control so are not puling the knee cap into place. I have flat feet and they twist outwards so this is rotating the knee and pulling the knee cap out of position. All of this is causing the pain and the crunching noise is the knee cap scrapping across the bones. as is being pulled and pushed in wrong directions.

Had 2 options available:
(1) Surgery, to cut some of the bone away in the knee and make the groove where the knee cap should sit larger. Would be done before christmas!
(2) Physiotherapy to strengthen and get back more control of my calve muscles. Also be referred to Podiatry to address the flat feet and my feet rotating outwards.

Due to current Mental issues we decided major surgery wasn’t really helpful. so going with option (2) Physiotherapy starts next thursday and been referred to Podiatry (currently 2 month waiting list) So long painful time to come.

Physical Illness Vs Mental Illness

Mental Illness rules my life, whether i want it to or not. However I have been suffering alot of physical issues too. I never know it its part of my mental illness, or side effects of medication. Everytime i’ve gone to see the GP, my mental health has been my priority cause of the state i’m in. I have let things slide, they were only small issues that i could ignore as they weren’t a major issue. But now i got to the stage that they have all built up and now causing bigger issues.

I have also been afraid to speak to the GP about it as, i keep feeling it’ll just be boxed off as ‘Mental’ issues, but after speaking with my Doctor it turns out there was some serious issues:
– Got a fungal infection on my foot so been given some Daktacort Ointment to help clear it
– Had ringing in my ears since my collapse in 2013 when i knocked myself out. GP’s gonna refer me to the hospital to see an ENT specialist.
– Got 3 moles , 2 on my forehead and one on my side that have started to grow lumps. Doctors not worried so been booked in for minor surgery to have these removed. No date as yet
– Also having lot of pain in my knees and my reconstructed one ‘crunches’ when i bend it. So going back next week to GP for a full exam and so she can go through the x-rays from the hospital.

So hopefully well get some things sorted.

Surgery Required?

I have had problems with my knees for years from a young age when i was diagnosed with Osgood Schlatters Disease. Since then my knees have gotten worse.

Back in 2010 i had to have my left Knee reconstructed. This was due to me snapping all the ligaments in my knee and this let the kneecap ‘Float’ free. So had to have the knee reconstructed and pinned into place. I Had 44 Staples, 3 screws and 6 internal staples put in. The knee kept giving way causing me to fall.  I had the Surgery in April and was house bound for 5 months and in physiotherapy for a year. Although the knee is a lot better it still has some issues, but overall the surgery was a success. Was also told that in the future the other knee may need surgery.

This year my right knee starting playing up kept giving way or locking in position, which required several trips via ambulance to hospital. Have had X-rays and MRI scan on the right knee and Surgeon wants to operate and do a full reconstruction like i had in 2010.

However, I’m not sure if i want to have it done. I always said after the left knee reconstruction that i would never have the other one done. Yes it is causing issues and normally if i was in good health otherwise i would have it done. But this year i’m having a number of serious Mental health issues and I’m not sure if I’m strong enough to have the operation and go through the recovery at the moment.

I have spoken with my GP & my NHS Counselor about my concerns and they both said to go with what the surgeon suggests, but not not sure the surgeon knows the Mental Health issues. If i don’t have the operation now, then i will need to have it in the future.

Stuck between a rock and a hard place. Really not sure what to do for the best….  [whohit]Surgery-Required[/whohit]