I'm looking forward to reading your account of the meeting with the CEO of your local branch of MIND vagueandrandom.
I agree with you on all three points. The only reason I suggested that London might be a better area to live in with regard to seeking diagnosis is that usually in bigger cities (but not always) there seems to be better access to services and the GPs are often more informed than in rural or remote areas. Also, out of area referral to The Maudsley via the NHS is probably a bit easier if you live in or near London (rather than at the other end of the country, like me).
Recently I've seen a few articles about supposed over-diagnosis/over-medication. It would be helpful if journalists took the time to find out what is actually going on in the UK with regard to Adult ADHD....perhaps by speaking to some of us here!
Just deleted yesterday's post - had a massive meltdown yesterday because I finally managed to speak to someone in admin at The Maudsley and they told me that they had not replied to my emails/letter because they had not received a letter from my GP authorising a shared-care agreement.
They did later contact me by email and there was a letter of response attached from the Consultant who had diagnosed me - basically saying that he was not going to recommend any other course of medication than methylphenidate.
I had - wrongly - assumed that my GP surgery had not sent the GP letter to The Maudsley. I spoke to my GP on the phone this morning and he said that it was sent a month ago. It seems that it has gone astray; nothing seems to go according to plan.
Anyway, I owe a big apology to my GP, who is going to write a letter to The Maudsley today and is also going to ask the Consultant to contact me by phone to discuss the medication. My GP was supportive of my concerns about this and said that it was entirely reasonable to want to be informed of all possible side-effects and whether there might be an alternative that may suit me better.
In the light of the letter from my Consultant at The Maudsley, I don't feel too hopeful that he may be willing to consider other options, but I need to at least speak to him and ask.
After 14 months of struggle, it's easy to jump to negative conclusions - also the untreated ADHD makes assuming the worst my default way of thinking.
Sometimes it all just feels like too much - especially since I now also have to deal with my contributions-based ESA running out at the end of this month and a PIP Assessment on 29 November.
It's like being assailed on all fronts - enough to put your cortisol levels through the roof!
Had the PIP assessment today and pretty much had a massive meltdown during it. I doubt that any of what I said will make any difference to my application and I fully expect that they will find some reason to disqualify me.
Due to me being upset during the interview, the assessor wanted to terminate the meeting, but I insisted that I wanted to continue as I didn't want to have to go through the stress of having to wait for another date and then all the anxiety of attending again.
The woman who interviewed me said that she was not employed by ATOS, but by 'an organisation that comes under the umbrella of ATOS' - same difference basically.
Anyway, the interview went ahead, but she told me that to qualify for PIP I would need to have been diagnosed 3 months ago. Due to the year-long struggle I had to get diagnosed (2 misdiagnoses before I was properly assessed), I only got my proper diagnosis in September. She said "how long have you had the condition?" and I said "All my life." She then asked me why I had not sought diagnosis sooner....er...because Adult ADHD wasn't a condition recognised by the NHS until 2009!!!!!!
I was surprised to be asked that as she had told me that she had a good understanding of ADHD due to her having a family member with the condition.
She also asked me why I was not taking medication for anxiety and I said that the anxiety was part of my ADHD mood swings/emotional dysegularity and I didn't think that anxiety medication would help with that (although I have taken anxiety medication in the past for panic attacks).
The questions are totally inappropriate for mental health or neuro-behavioural conditions. The whole process is demeaning and humiliating. At least it's over with now. I suppose I will need to appeal to Tribunal eventually if they are going to disqualify me for having been diagnosed in September (even although I've had the ADHD all my life). I don't understand how that can be right, but basically they seem to have thought of just about every way possible of disqualifying you. Does that mean that if you have a life-threatening condition and it has just been diagnosed, they will disqualify you until three months after your diagnosis? Maybe they are hoping that some of those will people die in the three months before they are eligible.
I took my husband with me for emotional support and was glad that he was there but also feel horrible about it, as witnessing my emotional meltdown was not an edifying sight (even if justifiable in the circumstances). Save
11.22pm and I am still feeling very shaken - it's a physical sensation as well as emotional and is very unpleasant. I remember reading about this in Dr Hallowell's book - after an extreme emotional upset it can take us a long time to feel OK again. I really wish that the process for claiming benefit wasn't as dehumanising as it is.
Hopefully, tomorrow will feel better. I think it will take quite a while longer to recover my self-respect; I'll never get used to having to reveal the most private details of the disabling effects of this condition to a stranger. It is certainly true that these assessments greatly disadvantage those of us whose disabilities are not physical.
Today has been better. This morning I saw my GP, who was great. He prescribed my first lot of Concerta and I have to collect it tomorrow as my local chemist didn't have it in stock (can't be many kids with ADHD in my town). GP is also going to write a supporting letter for my PIP claim.
I read up about the PIP and the '3 month rule' - it seems to be that you have to prove that you have had the condition for more than 3 months and that it is likely to continue for more than 9 months after your assessment. That sounds a bit more sensible; you'd think the assessors would get the facts right.
This morning I finished a bit of craft work that had been abandoned a few weeks back. I put on some reggae and made a lot of strong coffee (I know, the coffee isn't very good for you but it is my means of self-medicating). That helped lift my spirits somewhat.
My GP has written a really good letter in support of my PIP claim. I'll send it off to the DWP and ATOS(sers) today. The likelihood is that ATOS will still skew my WCA report to try to disqualify me, but any extra evidence is helpful.
I had a lovely surprise yesterday. One of my old friends from down south was passing through and contacted me to ask if she and her husband could pop in and see us. We had a wonderful evening chatting and catching up. They left earlier this morning.
That really lifted my spirits, as the DWP stuff has (once again) brought me quite low at times during the past weeks. So far the Concerta seems to be helping a bit with the concentration (I suppose the hint is in the name!). Otherwise, I would say that it doesn't seem to have much impact on 'blurt-ability' and inappropriate comments. It appears to have a mild calming effect, but that goes out of the window when you are under stress. I don't think there is that much difference with regard to managing stress whilst on Concerta - I still seem to fall into the vortex of emotional dysregulation. Maybe the over-thinking is a little bit less troublesome though.
Feeling like total cr@p today. I took my Concerta as usual this morning, but it still didn't help with the obsessing about my Open University work and the problems we're facing since the DWP stopped my ESA. That old familiar demon 'overwhelm' is back on my shoulder. It's impossible to think straight when that happens and of course it is a spiral of largely self-induced negativity that makes tackling anything very, very difficult. My husband told me this morning that I just need to "develop a thicker skin" - which of course is true, but the problem is that after a life of making fuck-ups because of my ADHD traits you end up feeling a bit like one of those wobble toys that fall down only to spring back up and then get knocked down again.
Additionally, I feel angry with myself for feeling sorry for myself and not being able to develop said "thicker skin".....AAAAAAargh!!!!
Yes - I know that this sounds like a load of self-indulgent whining. There are children in Aleppo right now who are orphaned and homeless and I know that my problems are tiny and insignificant by comparison. I'm writing about the thought processes here because it's a kind of therapy. The hope is that by writing it down it might afford me better insight. It frustrates me enormously that the overwhelm and obsessing is so disabling. It's totally self-destructive, but I just don't seem to have any control over it -even with the Concerta. Maybe that's because I'm beginning to develop tolerance already and need to increase the dose...or maybe it's because the thinking process is partly a learned response to years of negative experiences....or a bit of both.
Not having ANY money and having to depend on others erodes your self-respect (if there was any shred left after the Work Capability Assessment). It also engenders feelings of worthlessness and hopelessness. On top of that, any additional problems seem like the proverbial straw on the camel.
Although my OU course is part-time, the work requires a lot of close attention and I've had some problems with my tutor on this course. This is the first time in 5 years of study that this has ever happened, but the timing couldn't be worse. Reading the coursework has become almost impossible because my mind keeps jumping off the page and into a cycle of anxious overthinking about the tutor situation; none of the information seems to be 'sticking'. I've spoken to the Student Support Team, so maybe I'll be able to change my tutor.
It's really upsetting because I enjoyed the course so much last year and it gave me something to feel good about in the midst of chaos.
I decided to stop taking the Concerta. The mood dysregulation became completely intolerable and the impatience, agitation and irritability made me worry about making any social interaction. Standing back from the situation, I see that I should have handled the Open University problems more tactfully (and probably would have done if not whizzed up on Concerta!!).
Anyway - I digress - the Concerta made my mood dysregulation worse. That was quite a surprise, as I didn't actually think it could GET any worse.
The only positive effects I noticed were in the first two or three days of taking it; there was a small improvement in focus and a small lift in mood. However, those were short-lived and wore off by evening - I still managed to burn two saucepans black because I forgot dinner was cooking. After those first days, the mood lability escalated and into the bargain I became very agitated and a bit paranoid...great.
I just couldn't trust my behaviour whilst taking this medication, so I decided to quit 'cold turkey' as I had only been on 18mgs a day for 9 days. This is the third day without the Concerta and I woke up with the sort of feeling someone might have on the morning after behaving very badly whilst drunk at the office Christmas party....sort of "Oh noooooo!!!!"
Well, at least I managed to stop before any more damage occurred; however, alienating one Open University tutor and possibly raising doubts in the mind of another is not a very good outcome.
I've written to my Consultant at The Maudsley to tell him about the reaction to the meds and have copied my GP in. Maybe he will be able to suggest an alternative, but I'm naturally rather wary of trying another stimulant medication after this experience!
I saw my GP today about the medication. He told me that he had received the copy letter I had sent to my consultant detailing the nasty side-effects I had experienced with the Concerta XL and he asked me if I had received any reply from The Maudsley, as they had not contacted him. I told him that after sending an email with the letter to the consultant attached, I had no reply and had to send another two emails asking for acknowledgement before I received any response. I had also posted a copy of the letter to the consultant, just to make sure he received it. My GP said that he thought it was important that I should be able to discuss the medication and the reaction to it with the consultant and he also said that he would recommend that my treatment be reviewed by the consultant to discuss alternatives. However, he said that he wanted to try to help me now and, with that in mind, he had been investigating Bupropion to see whether it might be possible to offer me a trial of that. As it is unlicensed, he said he needed to point out that there could be (rarely) some very serious side-effects. The potential side-effect he thought most important to point out was the risk of seizures. He advised me to go and research it for myself and give it some consideration, but he has given me a prescription for Bupropion at the lowest dose, which I can go and get if I decide I do want to try it. I'll read and weigh it up over Christmas.
He has also offered to try to arrange some proper counselling for me with a local psychologist.
I am extremely grateful to my GP. I feel that he really does listen to me and it is probably quite rare to find a GP who puts himself out to that extent in order to try to help. It feels as though the light at the end of the tunnel is becoming brighter. Thank you Dr B.
As for The Maudsley, I am very disappointed that after such a promising start (the very thorough assessment and diagnostic procedure) that I have just been left 'in limbo' when the medication the consultant recommended turned out to affect me adversely. I know that doctors and consultants are expected to carry a very heavy workload these days, but it doesn't seem right that in the event of the prescribed drug causing a bad reaction there is no contact whatsoever - even a phone call or letter from the consultant to my GP.