So called-help for people on sickness benefits to address barriers to work

[Asleep In Wonder]

Hi jackieandwayne

 

Hey another sufferer! I rarely come across anyone with the same condition, yet alone someone who has been getting some effective help. I am really glad that you have found the High Intensity work helpful. It was mentioned once as a possibility for me, but, alas, at the time our area had no one trained to practice it. They hadn't managed to recruit a practitioner the last time I asked seven months ago either. At the time it sounded ideal, a chance to examine and acknowledge past events, attempt to repair and resolve them, then develop an active strategy for coping and remodelling response to triggers.

 

There's no such thing as a "smaller" type of PTSD. From what I have read, the word "complex" is added to differentiate those who have ended up with the condition from many traumatic events (often starting in early life) rather than a single life threatening event. I still have PTSD written on my medical files and only a note about the "complex" part. PTSD seems to be the overall term for the condition, not its variations. From the few people I have known of with this condition, it looks to me that not one person has it from just one single event, because as you well know, the condition expands exponentially, the longer it is left untreated.

 

Last year the DSMIV removed Complex PTSD from the latest edition, it may be substituting "Adult Cluster Syndrome" instead - where the USA treads, we tend to follow. Not that it improves the options available to us nor makes it easier to navigate this ESA hell.

 

Once I had a psychiatrist tell me that I couldn't have PTSD because I had never been in a war zone. Ignorance of this complex condition is everywhere. I pity any DWP "health advisor" who has the misfortune to have us on their list of people to see. I really do. Suggestions of "squeezing ice cubes" to control rage, mightl result in a squeezed head, and it won't be mine.

 

Like you, I've had to face the fact that full recovery is probably not possible because I have had the condition so long without effective treatment and it does cause permanent changes in the brain. I understand you completely. We don't get a chance when it hits. It's psychiatric injury, not illness and the system is not geared or briefed to deal with us at any level.

 

Funnily enough, yesterday, the day after I first posted, I finally received a letter telling me that my reconsideration for the Support Group was based on cancer, not my MH. The review date is 7 months sooner than the 2 years I was awarded for WRAG. A cancer diagnosis is cheaper for the DWP than a MH one, so where there is a choice for the Decision Maker, cancer wins. To me that just says it all.

 

I wish you all the best in your therapy

[jackieandwayne]

"Don't be so bloody stupid" said I to my GP "I've been at work not in Iraq!" She'd just said she thought I had PTSD and very severely. Off to the local funny farm for an assessment - and boy did I discover how right she was. I have to say once I had managed to accept what the psychiatrist confirmed, I went back and apologised and she has backed me to the hilt ever since.

 

My diagnosis is PTSD with Panic Syndrome and Chronic Sleep Disorder. Its the PTSD that starts that thoughts off and makes me fearful, that starts the anger, then the Panic sets in and can have me on my knees (still fighting though). The gob knows no boundaries - if it must be said then I'm your lady! Mind you, when on one, nobody could say I was a lady!

 

I think the memory that is safest to put on here, and one that is cringeworthy for me is when I was still employed but the firm were having me assessed by a "private practitioner" for the purposes of retiring me on a good pension. I had, the day before, been given my diagnosis. I went to see this guy, still not fully aware of what my condition could lead to. It was so obvious that he was trying every which way not to agree that I had PTSD (he was even screwing his face up when trying to deny what was wrong with me) because if he did agree I won and the company had to pay out. In the end I just cut a few corners, I lost it, lent across the desk, caught his tie and forced his head down on the table. "Look at the state of me you stupid F.... uneducated peasant" I roared at him I don't know who was more frightened, him, me or the receptionist who came bursting into the room! I just legged it. I got him to see it my way though in the end.

 

I know I am very fortunate to have my practitioner. She's just the job for this - and its not just her expertise - it her personality as well. She makes me write things to her, then when in a session, she'll suddenly spring it on me, and several times just mentioning something has made me panic. She had to make me realise that although very unpleasant, I won't actually die from one of these attacks. So she sat with me, just waiting for it to go away, calm as you like - and guess what? I didn't die! Can't always stop the panic though, but at least I won't die.

 

You are right also, its not usually one incident which causes it (except in shockers like Kings Cross for example and then I think that was termed "Survivor Guilt") but it builds up. Serious bullying in the workplace can and does cause it, its a sod to sort out, if not caught within about 6 months it takes a grip on you. Trouble is, who would dream that they were suffering from something like this, until there has been an incident that is out of character?

 

Do you get all the physical bits as well - like if someone you don't know is walking behind you, your legs start to ache, toes start to tingle, get a bit of acid indigestion, heart rate goes up, breathing can get tight, get a bit sweaty? Oh boy, I just think now, "well, if you mean me harm get on with it - I'm full of adrenaline and its making me angry......". They ALWAYS walk past, meaning me no harm!!

 

Well, this is what we've been dealt and we have to get on with it I suppose. It seems so unfair that you can't access this level of support. At least you are in the right group now for benefits - but for a horrible reason. I hope all your ills are cured, and very quick too, but I think we know we are stuck with this don't we?

 

My advice re benefits for anyone suffering this condition is to get the GP or psychiatrist to point out very strongly the dangers to other people if you are forced to meetings, groups, and such like. There are a couple of regulations allowing for this scenario, I think 29 and 35? Whatever, they just worked for me for another 6 months in the support group because of the PTSD.

 

What is it they say - lovely to meet you but a shame it couldn't be under better circumstances!!! Oh you have to laugh as well don't you?

[Asleep In Wonder]

Nice to meet you too Thanks for sharing your "safest" event! Mr Tie Throttle got off lightly I think. But that's the thing isn't it, when it happens, there is no time for thinking, no time for the mindfulness that is forever being preached at us? Wallop, we are right in the middle of it. Defence/attack mode and everything in between. I wish I was braver and could share some of mine, but it's a bit triggery sometimes for others and it's certainly triggery for me today. I can also get into the habit of "oversharing" and that can be mortifying for everyone, including those paid to listen. I once took a box of tissues to a counselling session, not for me but for the counsellor who would generally sit there, gently and unhelpfully weeping as I recounted my story. I laugh at this now, but at the time it was pretty poor.

 

Your Practitioner sounds excellent and I am envious, but glad you have her. Yes, I get the all physical stuff big time. I am constantly hypervigilant to pretty much everything that might be a threat to me (and the stuff that isn't) but people in close proximity are the worst along with phones and some types of noise. Hence group things, social events, sitting in waiting rooms is impossible. The fear of the withheld number is ridiculous. I can live for weeks behind closed curtains and never answer the door. My GP did use the regs 29 & 35 in her letter for my reconsideration, strong, clear words too, and another supporter wrote a statement using these exceptions, but it was ignored, along with the inch thick pile of evidence I submitted. I was assessed on paper, by a District Nurse. My CAB advisor says it's not worth the risk challenging it right now as they might take the lot away. I'm working on it though. That's a possibly positive outcome of PTSD, the ability and need to fight for justice, not just for ourselves but others too. I feel sometimes like I am allergic to injustice, do you experience this? I've been an avid campaigner for animal welfare issues throughout my life and where I can I will always try and help (people too). This has led me into further abusive situations. With PTSD it's the gift that just keeps on giving!

 

Lately, I've noticed that the adrenaline keeps the hot flushes at bay - every cloud etc

 

The Oncology staff have been truly brilliant in how they have coped with me. They have been kind, made every effort to accommodate my actually quite simple extra needs during treatment and also to get themselves read up on PTSD. The surgical staff were the same. I cannot fault them. Without their support, I wouldn't be having any cancer treatment at all. Sometimes, for me it's the simple adaptations that make the difference between coping and leaving a wake of destruction and shock behind me.

 

What you say about bullying in the workplace is so totally bang on target. I endured years of this (on top of a lifetime of similar and worse) and in the end I broke. I basically was out on my own, without a clue what to do and didn't get any proper help at all. My biggest problem in this was actually me I now believe. I was brought up never to moan, never to tell, never to whine, everyone else came before me. I learned very early on that if I did speak up, I'd get treated a lot worse. So I learned to do the stiff upper lip, learned to do the humour act, learned to blank it out, then hide away, turn it on myself and self harm.

 

Have you ever looked at the late Tim Field's website? His work put me wise to so much of what has gone wrong for me. I basically had to fight for years to get a diagnosis, I was fobbed off with being told I had depression and anxiety for far too long, but what is one to do when you don't know what is wrong? You believe the professionals, and if they are wrong you are up the brown creek without a paddle.

 

Anyone who is being bullied in the workplace or by anyone, have a look at bully online dot org The site is a bit Web 1.0 but the information in there is extensive and of really good quality.

 

Jackieandwayne, I really appreciate your reply. This is such an isolating and misunderstood condition that to know there's someone else out there, has been very helpful to me. Thank you for your good wishes xx

[Perseus1]

I want to get back to work after an injury, but how to hell do I get treatment please?

 

Is there a page on patient's rights etc please?

[Nystagmite]

This was mentioned again today. Something was mentioned about it on Twitter last night. I replied that the barriers I have are ignorance, other peoples attitudes and the refusal to make reasonable adjustments.