h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I had my fourth relapse December just gone, it surprised me. After physio in the summer when I finally realised that I wasn't in danger of prolapsing a disc or damagng my back in any other way, I thought I was sorted. I did my exercises, we walked more, even a few 10 mile walks. I still needed to rest and was in lots of pain at times, but fantastc progress. I thought all that had happened was that I had got very weak due to lack of movement, due to fear, so all I needed was to build my back up again.

So when I relapsed and the pain was worse than before, what did it mean? The doctor came out and said muscular and referred me to physio. He said it was begining to look like a neurological problem and that physio could refer me to the chronic pain clinic.

Once I was over the worse pain I started my exercises again, knowing that I needed to bend over and stretch and work that back. I know I have no lower back problem, except stiffness and aches.

I read about some new research which said that children exposed to long term abuse, react with fear and this causes chemicals to be released which can lead to inflammation, if it goes on long enough. Hmmm thought I, inflammation explains the pain, the IBS, overactive bladder, VV etc etc.

So brought it up with the physio today and she agrees with my assessment, that I have been suffering from PTSD since 12 and that it has had long-term effects on my health. She asked me why the doctor had referred me to physio when it is obviously more complicated than merely lower back pain. I explained that would have involved listening to me and putting together all the symptoms and realising that they maybe connected. She agreed that its complicated and that I needed to be referred to the chronic pain clinic, psychiatry, occupational therapy and maybe a few others.

Turns out my doctor has to refer me to the chronic pain clinic, at which point I burst into tears. I have developed a phobia of doctors. I explained how when I was on anti-depressants the doctor tried to tell me that time goes forward not back, so there is no need to feel upset about past events. Right, so flashbacks are past events are they. Also how he compared depression to feeling sad, which is pathetic, there is more and more research coming out about how people with depression have unique symptoms in their brains, new brain cells do not grow in certain areas etc, and my doctor has the cheek and lack of knowledge to compare depression - an illness, with feeling sad.

Anyway, he is obviously incompetant and an inappropriate person for me to goto help for. The physiotherapist realised this and offered to telephone the doctor, to aid further referrels without me having to go and visit. A fantastic woman! Even if it doesn't work, being listened to was such a novelty.

Thing is, I have neurological damage, how do I treat that? What do I tell my parents, when they ask? Etc etc. I have no idea of how to approach neurological illness, guess I have some research todo.

It's really good that you've found someone who's actually listening to you! Here's hoping her help re your doctor has an impact.

Perhaps when you know more about the nature of your neurological damage, you'll have a better idea of what to say to your parents. They'll probably have all the same questions you have right now.

In telling my mother I had a long-term illness, I found out (the hard and argumentative way) that she handled it better if she could be of some use in terms of telling me what to try and what tests to go for, and that, even though she was telling me the bleedin' obvious or the ridiculous, sometimes life was easier if I went along with her and let her mother me. Whether your mum would be the same, only you can know, but anyway, there's my .

Its just difficult as I tell her the likelihood is its neurological and she asks questions. I can tell her that depression changes the brain and that is one cause, I cannot tell her about PTSD, or about the recent research that abused children react in ways which build up inflammation, which damages their health later in life.

I cannot talk to her about the events which started it all, so its difficult.

Still it was good to have a rant and rave, I am utterly fed-up with doctors and the NHS and wish I could sort this myself.

I forgot about your not being able to tell her.

Yeah its a sod. I did talk to them about it in the past but it was so painful, I don't intend doing it again. They think I made it up anyway, due to depression etc.

To get working on all this would involve a psychiatrist to get to the route of the problem, but I really really don't want to talk about the details of it all again. Its so many years ago, I want to move on. Its funny but in the last year or two I felt I was dealing with it much better, its disappointing to realise that may have been true mentally/emotionally but that didn't stop it affecting me physically.

I am very tired of all this. I may just ignore it and see whether I can improve things by working on my lifestyle instead. They arn't cures for most neurological conditions, not mild muscular stuff like mine. Maybe I should tackle the PTSD side instead, by learning to relax, enjoy life and all that instead. In the hope it will have repercussions on the neuro side.

I'm just waffling here, as I htink things through.

Obviously if it gets worse I will have no choice, but the stress of dealing with gps, doesn't seem worth it to me. One of the gps I have seen, triggers me. Visiting them just makes me worse. Maybe for now, I can just ignore it. I can't get about much, but its better than nothing and seems to be improving, so maybe I should just look on the bright side.

It would have better if when I younger and stroppier I had broken contact with my parents, but its too late now. Mum depends on me too much and I cannot cause her pain. Dad even shows signs of caring about me now, its quite remarkable. I guess i have made my bed and shall have to lie in it, I will accept that I cannot sort things out for better or worse with my parents - on that subject - and just deal with it as best as I can.

On reflection though I would recommend any other survivors to break contact, you can't recover completely whilst still being involved with them. I never realised though that I would be damaged on a physical level by it all, I have never really heard of that. I would like to find some stories of people who have coped with this and how they survived.

To sum it all up - poo!

Poo!

It could be worse! I needed to rant and rave, but now I am just getting on with things.

I made my first trip to a supermarket by myself yesterday!! I have a few corner shops I can sometimes get to, but they don't have a lot in them. The supermarket is only 10 minutes away, I never thought I would have trouble getting there, its getting around it which is difficult as well. Luckily I am learning to be bolshy, if people don't get out of my way, I just stand there, its not like I am in a rush. To be honest I look as though I am struggling and people are usually happy to help, it was very difficult getting round and dealing with the basket, but I did it!!!!!!!!!!

Only got a couple of things, as its difficult to carry stuff home, but the walk home was easier than the walk there, its just the right distance to help me loosen up. I get taken over by everyone now though, I can only walk very slowly - but I got there - I can do it - so who cares how slow I have to go!!

Will be more positive now, as dwelling on the negative will not help me heal afterall.

Forgot to say Moonglum is away for 2 nights, so I am doing my timetable now. I sleep when the pain eases and don't have to try to fit in with anyone, its lovely! I love being alone for a few days, I always get so relaxed. Been listening to a lot of radio 7 the old stuff like Round the Horne, Goons etc and lots of new plays and things. Strange ghost tales, things like Crime and Punishment and things with Stephen Fry in them. Oh and Ladies of Letters.com at 10am is very funny.

If you get any free time, do check it out. http://www.bbc.co.uk/bbc7/listings/index.shtml?Today

You can also listen to everything for a week afterwards, so you can pause things which is very handy, I barely listen to anything live. http://www.bbc.co.uk/bbc7/listenagain

Hey kaz...well done
Maybe a shopping trolley would help,you would be able to push it home,rather than try to carry things,and you get more shopping too!!
I don't know how i missed this posting,but it's lovely to see you in here again.

Hi Sal, you may have missed it because I have gone back to my original account. I'm awkward like that!

I've got a really great, snazzy-looking shopping trolley. It cost about £12, and really helps me when I'm around town.

I think they're a good idea snailrind.....although i have a wheelchair, i'd love to be able to walk with a shopping trolley
Kaz,no wonder i haen't seen your recent postings then....I've added you to my friends list,hope that's .I don't want to miss anymore.

I went to family planning this week and as usual they asked what the problem was with my leg. I said 'no idea', she said 'ahh one of those'. So I asked her whether she was referring to the fact that at least a third of all problems whch people go to the doctor for have no easily recognisable cause or treatment. She said it was and she couldn't understand why people thought we knew everything.

Well I said its just been reported on the news that heart valves have been grown from stem cells, when people see reports of technology accomplishing things like this they cannot understand why the NHS cannot do anything about simple pain.

So we chatted and she confirmed everything I thought. For mind problems you goto a psychiatrist, for body problems to a GP, and never the twain shall meet. Many people know that PTSD results in physical problems, but no-one knows how to treat that except with anti-depressants and that often doesn't work. Also, the NHS is now constructed not to help patients with their health problems, but to fulfill their targets. If your health problem is one of their targets than lucky you, otherwise you will never be a priority. She said that if you are ever labelled as having an idiopathic condition than you will full into an abyss and that will be that. I agreed as I said my problem does not have a label, therefore how will the NHS know what box to put me into.

So its not just a case that the NHS only fulfills targets, they also only treat patients who have easily identifiable illnesses.

So I know I am wasting my time with doctors now. Its funny how I have these chats with physiotherapists and family planning doctors and nurses and people like that. The GPs never admit it.

So I shall goto my GP, say that I recognise I will not get treatment because my condition is a bit difficult and not on a target list. But will he kindly sit there and shut up and note down what I say as I will need him to support various applications I will be making for disability allowance, so I need him to agree with the problems I have, but not to worry his little head about solving them.

Sorted!

Sorted!!!If only kaz!!I will make a point of e-mailing you tomorrow,so if you don't hear from me,please let me know..my e-mails are from the digi as well,although i do have an msn addy if i need it!!!
I understand you been able to talk to other health professionals ,and them listening...and more to the point understanding.......When i go in to see my g p everything gos out of my head,they look as though they "know all this already,so why tell them again"..not,"well obviously things aren't working,so lets sort it out"!!!
Chat soon kaz.watch out for the e-mail!!

Hi Smurfles I shall look forward to your email.

On an emotional level it feels sorted though, as I now know I can give up on my GP and therefore remove a large amount of stress from my life! Accepting that I will not get diagnosed or helped, means I can move on to other things.

That's how I feel about my stuff too.

I can see why. I know you said you had a sympathetic GP, but what can he do? If there is no treatment etc then we are in much the same place. I felt it would be nice to have a decent GP, but if there is no useful diagnosis etc, then it makes no real difference. Its to accept in our modern, technological world that when it comes to some physical problems there is no help or understanding whatsoever.

You may have the label of ME, but as far as I understand it, that it a generic label for a group of similar symptoms. Such as meningitis, there are many different types, but as they all have the same symptom, they get the same name, but are treated differently. I believe that ME is a name so that you have a label, which the NHS finds useful, but it is no real diagnosis of what is actually going on. Please correct me if I have that wrong though.

Poo

Lets find a bright side to look on! Its in the news that Keith Richards snorted his Dads ashes on a drug binge - that should provoke a laugh I hope!

The Keith Richards story is boring afterall, he says he added a bit on purpose and his agent is getting all upset saying it was just a joke and why would anyone believe such a thing. I am sure a good story will appear later today.

Smurfles did you send that email, cause I did not receive anything. No worries if you did not send anything, just wanted to sort it out, if you had.

I have started a new exercise regime and today I am knackered and energised at the same time. I am also in very little pain. I havn't felt like this since September last year. I shall enjoy this, the stiffness is increasing again, but it was heaven for a few hours.

I need the incentive to keep me going as the exercise is very painful and difficult to face, when you are already in pain to start with.

Taking my craft more seriously, have opened a trade account with a crystal company I worked with when I had my shop. Got £75 of crystal chips due, to be stuck to champagne flutes and picture frames etc. They are looking very good, that may make me sound big-headed though!