Hi all
i joined this group a week or so back as I am in the process of getting an autism diagnosis. I was really nervous about posting but I had some great advice from members on here, so I’m back looking for advice again.
I am a worrier and have been as long as I can remember but I have always managed to hide this along with all my other quirks but due to a very unpleasant experience I was no longer able to hide things. I will try to explain as briefly as possible and try not to jump all over the place. I am so sorry this is long I just feel I need to explain even the bits where I’m in the wrong so I’m been honest and hopefully get advice.
Background
20 years ago when I was a teenager I had an accident which left me with a long standing injury, whilst it might not be the most severe injury that could of happened it did turn my life upside down. My plans for the future changed as I was very active and sporty. I have to take medication constantly which has unpleasant side effects but I managed to make the most of my life and very few people would know anything was wrong if they just saw me sat down. As I have got older the constant chronic pain I am in has got worse and I do worry for my old age and how I will manage the pain and be able to stay working. I have had various doctors some good and so not so good which is something I always stress about if I need to book any appointment. The surgery I am at now I joined when I moved to the area in about 2002 and had a doctor let’s call him dr A, he seemed ok and had no issues until I had a severe flare up which left me house bound living on my own. Dr A messed up my medication, refused a home visit and just kept signing me off work. I had not been in that particular job long so after a few months they understandably wanted to let me go. My parents do not live local and worked full time but when they saw the mess I was in they somehow managed to get me in the car and took me to dr A and refused t leave until he had seen me. After a heated discussion I was sent for a scan which showed up more damage and the hospital said I should not have been left so long. Anyway after this I booked with another gp who was great and she sorted out my medication so I just saw her, she then retired. I was quite stressed about this as I don’t like meeting new people and discussing my issues, I don’t like the smells, sounds and lighting in the drs so I was worried who I would get. I then saw another GP let’s say Dr B she was ok but didn’t really click with me and I felt just fobbed me off with tablets that didn’t work. Fast forward a couple of years and I had another flare up and was off sick from work again, I called up and was told there was only one doctor available DR C. I was worried, anxsious as this would be a new person but in a lot of pain so I met her. She was amazing, she totally understood my condition and has managed my medication for the last 8 years without any major flare ups.
Where I’m at now
Due to horrible situation I found myself in I had a breakdown (Dr c explained not called breakdown these days but that’s what it was) I was struggling with pain, stress, anxiety and my quirks were getting harder to hide. Dr c spotted there was an issue but I am used to putting on an act I played everything down until I cracked. I had plenty of pain meds at home and decided I wanted to take my own life ( I know now how stupid I was) I became a bit of a nightmare.DR c tried to get me help from an in-house MH team as she said if I was referred to hospital it would not be right for me, she also said there was a choice of 2 people for me to see and she said she thinks A would be better than B because B was patronising. It took a lot of persuading but I agreed. DR C also removed all medication from me bar the pain meds that go directly into skin, she then prescribed diazepam to help me relax. Due to what I had done she only gave me low amounts and said she was on leave but when I saw MH nurse A she would give me a new script which would last until her return, she also booked blood tests for just before my appointment. Dr C knows I don’t like the waiting room so she is happy for me to wait in the corridor outside but I knew the nurses don’t know this so I waited inside which set my anxiety off. I was called in by a nurse and I was expecting my blood to be done but the MH nurse had called me in early so I was out of turn for my appointments, the blood nurse was looking for me so the MH nurse called her and said she had me and she would switch the appointments, I know this will sound petty but it really threw me I had it planned in my head the order of things and I was flapping and worrying the blood nurse would be angry. I then asked about the script but dr c had not given it to MH nurse so again I wasn’t coping. I found it all distressing and clamed up. When I left I hadn’t even reached my car and I was called by the hospital to say MH nurse had referred me, I panicked as dr c had said this would not help me and I didn’t want to go against her advise so I said I wasn’t interested and I was fine. The next morning I was got out of bed by 2 MH nurses from hospital wanting to take me in, I refused. Dr c returned and this is when she raised autism, I think she has thought it over the years but felt I could benefit from diagnosis. Over the next 1 to 2 weeks I was struggling with what was causing the breakdown, pain, understanding autism and I did something I am ashamed about. I started manipulating dr c into giving me more diazepam, I was claiming I had lost scripts and when the pharmacy filled them I was claiming there were pills missing. Now whilst I was been devious I can not tell a blatant lie so when challenged I owned up. Dr c was obviously not happy but was understanding but was concerned re a potential overdose so made me go to a&e.
I was sent to A&e on the Friday and on the Saturday I was called by the MH hospital, they were quite insistent I went in straight away so I did. Now I really don’t like to upset people and dr c had said the MH hospital was not for me so I had this in the back of my mind. I was having a better day than I had in a long while so felt I held it together well during hours of questioning. The 2 professionals said I had two options both were just letters that obviously stood for something/ a dept but I had in my mind what dr c had said so I said I was fine and dr c had a plan and I would see MH nurse A. Even though I didn’t want to see MH nurse A again I thought that’s the right thing to say, obviously I didn’t want to drop dr c in trouble by saying she had told me hospital not right ( she more or less told me they were a waste of space) I thought they had finally agreed to this as they let me leave but I was called back the day after to see 2 other professionals, there outcome was for me to be hospitalised or again another serious of letters that stood for something. Again I refused as I didn’t want to drop dr c in it.
finally I now get to the point
i had an appointment booked with dr c on the Tuesday so I was going to tell her I was slowing reducing my diazepam and that I would see MH nurse A. On Monday I received a call which basically removed the situation that had caused all this stress, the relief was almost instant. Unfortunately About 10 mins after this call I received a call from the surgery to say dr c was off sick so would not be able to see me tomorrow, I said that’s fine I’ll see her when she back, they said I should come in and see a different doctor to get more diazepam. I explained I had been cutting down so had enough so no biggy, it was then the manager said well actually dr c no longer wants to see you. I just started to panic and the manager was really abrupt and wouldn’t tell me why, it then turned into a massive panic attack as I really do struggle with change. The manager told me to come straight in and dr A would see me, I said no he messed up I don’t want to see him so she agreed I could see dr B if I went straight in. I went straight away and it was a trick Dr A was waiting with the manager they said dr c didn’t want to see me anymore and wouldn’t say why, I was a mess and was insisting I could see dr c to ask her why, they agreed I could see her Friday with the manager present.
i went on the Friday and it was awful, I didn’t feel comfortable with the manager been there and dr c kept changing from nice to horrible it was like she was saying what she had been told to say. She accused me of not accepting help from the hospital but I couldn’t say I only refused because you told me not to use them especially with her manager there. The meeting ended with dr c saying she hadn’t ruled out treating me in the future and she knew I was ill and promised she would call me with the results from some tests I was having, I asked if she meant it and she again said she promised to call with results. The manager then agreed with dr A I could see dr c again once I had been off the diazepam for 6 weeks.
Whilst I was upset about all this I was happy it would blow over and things would go back to normal. I called the MH hospital and booked in, ive come off the diazepam but not only that I have not taken any pain medication other than the prescribed bupamorphine that goes direct through my leg. I’m in a hell of a lot of pain and the MH hospital agreed that I should be back on meds and that my issues are caused by pain and autism and they treat neither. I booked with DR A even though he really stresses me out and explained I’m ready to go back to dr c and just get my life back on track, he said that it was not agreed 6 weeks after diazepam ( it was I have it wrote down and signed by manager) he said it was when hospital discharged me. I tried arguing but I don’t argue I can’t do it but he said I can’t see dr c she didn’t like me. I stood up to leave and just said please just ask her if she will call as I need pain meds, he said ok. About an hour later I got a text to say dr B would be calling me on the 7th to discuss pain meds. So assume dr c said no or he didn’t even ask her. 7th has been and gone I heard nothing.
Today I got a call from MH nurse B the one who dr c said was patronising and wouldn’t be able to help, I panicked straight away as I didnt want to do the wrong thing. She said I had now been referred to her and gave me an appointment that I can’t attend, I explained I was in a new job and don’t want to be taking time off as I have more than most due to my physical issues, she explained she only works 1 morning a week so no flexibility. She then said if I had cancer I would have no choice but to take time off, I didn’t have an answer for that. She then said if I couldnt see her would I see my GP I said yes if it’s dr c and I feel mentally well and would just like to discussion getting pain meds back she said she would sort. She called back and said I have read your notes you can only see Dr A and you are under the autism team. I said I have not had anything explained so am nervous about the asses,ents she said from your notes you must go it will help explain why you behaved the way you did. She then tried to book me in with dr A I refused and said I have no reason to see him, she said well that’s all the help I can give you.
so after all this waffle I think I am asking for help to understand what I have done wrong is this an autism thing and will dr c not see me because she convinced I’m autistic?
why am I upset I have stuck to what I promised ie seen dr A, stopped diazepam and put myself through more pain by not taking any pills or even asking for any?
am I stupid for been upset that Dr c didn’t keep her promise and call with results or see me afte 6 weeks diazepam free ( it’s actually 4 months now)
why are all these departments claiming they want to help but then see autism in notes suddenly pass me on?
maybe going through with diagnosis is the wrong thing
I really don’t understand why I am letting this get to me like I am but I don’t understand how somebody I trusted (which takes a lots for me to trust) would do this to me.
in comparison to this my dentist who has no idea about the potential autism diagnosis is so understanding it’s like she knows without saying if that makes sense. She always jokes about me sitting out of the way of other patients and how she knows what chair I will be sat on. The nurse she works with comes and gets me but if she has a different nurse she comes out herself and tells me this. She also explains everything in detail in a way I can understand - maybe she has seen traits and just assumed but it makes such a difference as I don’t feel too bad going now.
sorry again for long post
