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.

Life has Stopped

3 Years ago my life came crashing down around me and hasn’t really moved on from there. Greater Manchester Police have ruined my life! I don’t blame the individual officers but the force as a whole. It could have and should have been dealt with differently. Maybe if it it had Greater Manchester Police wouldn’t be a destroyer of lives. (sorry have really strong views on this)

We are 3 Years on from my Nervous breakdown and i’m in two minds. Yes I have moved forward since then and my anxiety, Depression and PTSD have improved on what they used to be. I know I still suffer greatly and this is has stopped my life in my tracks. People keep telling me i’m in a better place and have improved since 2013, but I’m not myself. I know i’ll never be the same person I used to be in 2013 but I’m struggling to find myself again.

Anxiety, really does rule your life. You have to try and plan everything, e.g. planning on what clothes you wear, I suffer from anxiety sweats so need to plan ahead. You gotta plan escape routes and where places of safety are if i should have a panic attack during the trip out. People who don’t suffer from anxiety are unable to understand how much it rules your life. Add in depression and PTSD flashbacks it is a constant battle.

Mental Health care in the NHS is not handled well. (coming from first hand experience) Everyone wants to “help” by giving you strategies to cope with anxiety, depression and PTSD. Not once has anyone sat down and tried to talk to me about what the causes of it are. So i’ll always be left with the causes and not being able to correct/deal with them, but just to cope with the anxiety and depression that affects me now. I understand we cant go back in time and change things, but i need to try and understand what happened. So far its been, don’t think about it, lock the memory away and throw the key away. So rather than acknowledging and knowing my feelings its just switching everything off and leaving me feeling numb to everything.

Life should not be like this, no one should live like this.

Anxietystop

Angry

I’ve attempted to write this post multiple times and each time I’ve deleted for fear of being rejected, treated differently or being locked up. However, I need to get these feelings out. I tend to bottle feelings and my thoughts up. All that happens is it just eats myself up inside.

I’ve been feeling very angry these past weeks. Firstly at myself for not recovering quickly enough and letting/allowing myself to feel this way. Other people seem to be able to survive and get by their trauma and issues without any problems, so why can’t I?

I’ve been having nightmares a lot recently and these are completely different to any I’ve had before and don’t really know how to handle them. The only way I can see to avoid/rid myself of these is not sleep. It’s not a conscious choice, my mind would just rather be awake and active, rather than have these nightmares. I feel that I don’t have any ‘fight’ in me anymore. I’m physically and  mentally exhausted, but these ‘new’ nightmares are violent ones and what’s scary is its me being the violent one. I’m fighting and attacking/defending myself against people who have abused and hurt me in the past. I’m not a violent or angry person, I never have been. I really don’t understand where these feelings and emotions have come from or how to deal with them.

I’ve also been in lots of pain over the last week’s as well. I think it’s down to the orthotic insoles the Hospital has made for me. I have a number of issues with my legs. I have flat feet, numerous issues with my knees and also have issues with my hips. I Suffer from hypermobility (means my joints more way outside the ‘normal ranges’ they are meant to.) as the insoles are helping to treat my flat feet, this puts pressure on my knees and my hips. As everything is trying to readjust to the new positions I’m suffering a lot of pain, more than I let on (don’t want to seem a whimp or crybaby). I know there’s nothing that can be done at the moment to help. GP won’t issue any pain medication, PhysioTherapy and the surgeons won’t do anything until my Mental state is better. However I don’t think the Mental Health teams or the GP are listening to me or understand what I’m going through. NHS department’s don’t seem to talk to each other. everyone seems to be refusing to help and not wanting to do anything until something else has happened. I think it all needs to be done at the same time, but that seems impossible. So I’m left in Limbo and in pain. The lack of sleep due the nightmares is probably increasing the pain levels as nothings getting a proper rest and time to heal. Seems like another vicious circle which I can’t escape until something breaks, I’m desperately trying to hold on and keep my head above water, not just for myself but for family and friends. For fear of letting them down and a fear of showing how truly weak and useless I am. I’ve lost 3 years of my life and there doesn’t seem to be an end insight.

I hate disappointing anyone and have been at times telling be what they want to hear rather than the truth. I know that’s counter intuitive but I don’t want people sad and worried over me. that’s a lot more important things going on in the world than me.

I’m angry, tired and in pain. A bad combination at any time. I’m still plodding along but I really do need to be fit and well and back working. Since having my Disability payments stopped (PIP) I’m in a big mess with money. I just can’t seem to manage it like I used to. Am I losing all control, everytime i think I’m getting back on track it gets messed up. Have more money going out than I get in. I don’t spend money on me it all goes on bills. luckily I’m not in arrears but I can’t carry on this way, it’s no way to live. well it’s not living really it’s just getting by. If I could afford it I’d buy new clothes as mine not really fit anymore or have fallen apart. My weight seems to go up or down so regularly most clothes I have don’t fit anymore.

Sorry about the length of this post and any waffling I did. sometimes it helps to get the feelings out even if it is just on this page. Still a release of emotions and pressure and I guess that can only be good.

Starting Treatment

Well I’ve started having treatment through Healthy minds Bury. Only had one session so far.

Since my Breakdown in 2013 I’ve been asking and asking my GP and any mental health workers I come into contact with. Asking and sometimes pleading to have someone to talk to, someone i can discuss what happened, what i was feeling at the time, but no-one seems to want to listen to me. Everyone seems to want me to do CBT (Cognitive behavioral therapy). In order to help treat and manage my anxiety, depression, PTSD symptoms. Which in time would help. however i cant shift the feeling that i cant work on controlling my symptoms until I understand whats causing it. I cannot go forward until i go back.

Healthy Minds Bury are doing a CBT treatment course with me. And i’ll be honest i’m not sure. I’ll give it a go and back it 100% but its not what i asked for and kinda think the problems will continue afterwards. I’ll only be getting six sessions, lasting 30 minutes each every 2 weeks. I Know the NHS is stretched and Mental Health services are not that well funded, but do think this is a little poor. People like myself who have “imploded” and have numerous issues are kind of stuck. You can only focus on one thing at a time, then you have to have a pause after the sessions have finished to give time for what you’ve learnt to sink in and for you to adjust, before you can start the next issue.

With the amount of issues i’m currently facing, its difficult to establish which symptoms i’m having is physical or mental health related, this is how i found out i had badly damaged my hearing. With so many different symptoms some of which overlap its difficult to try and focus on one particular issue.

It’s taken me almost 3 years to get some help and this is only one step. A very long road ahead.

 

NHS Failing Mental Health sufferers

I was referred for Cognitive behavioural Therapy back in January 2015, i’m still waiting been told it wont be until November or december till i’m seen. This means it will have 14 months since my last therapy and its just not helpful. The progress and steps forward i feel i made in 2014 has been undone.

Went to the GP this morning, and was told after 2 Years since my breakdown in 2013, there’s nothing more they can do for me. I have to sort it out myself.  Its a mental health issue and I’m the only one who can resolve it, i have to change the way i think and start improving.

Doesn’t really work like that, What does she think i’ve been doing for the past 2 years? clearly i’m struggling and not getting better fast and need help and assistance. Not to be told Sorry your on your own.

 

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]