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

PS thanks for all the alternitive spellings of my favourite Latinism btw - but honestly lads, I'm 5'4" and have a short walking stick!




.... a limited amount of ink;



and big handwriting!

Don't let (things like that) grind you down!

I used to be an OT with various Social Services Depts in England and Scotland and I agree with Evadne, phone up Social Services and ask for the Community OT's office. Most SS OT departments in the UK will take self-referrals and from friends and family as well as GP's, so just refer yourself.

In addition to supplying any aids and adaptions for you, they can also give advice on other products you can buy yourself and suggestions on practical ways to help, such as ways of standing, sitting and lying, to put less strain on your body. They can usually help with filling in of DLA forms (forms? ruddy huge books!!)and can get you access to financial assessments for your benefits.

*waves to Jack* How's it going, good to see you

Yes, i agree, it's NOT the pain per se that is the real problem, in time your pain threshold adapts to a certain extent. It's the loss of independence, having to base every little choice on "can i actually manage to do this? If not, can i find someone to help me? Is it worth it?" In the end 9 times out of 10 you just end up saying "oh sod it, i will just stay in & do without"

In many cases the bordrline beteen crippling illnesses & terminal ones is a fine one. Three years back i was told that my illness combined with other stuff i have (heart problems & liver failure) would probably kill me within two months. Still here folks! Wake up & am amazed i haven't passed away. But feel i am fading & to be honest, at this point would possibly just say "fine!" & heave a sigh of relief. I think if you have someone who genuinely cares for you in RL, it is possible to continue & beat the odds, but if not, it's all too easy to simply give up.

I find i am becoming incredibly impatient with people who whinge & bicker & are generally uncaring about other people; i feel like screaming "Life is very short and there's no time for for fussing & fighting my friends"

I think having any sort of major illness/condition tends to focus you on the priorities & that's a positive thing.

went tonight, so i am feeling but realistically, i can't cope any more. It really doesn't help when people say "well, you were stupid to consider having a dog when you can't walk properly!" but at the time i got him, i could walk a hell of a lot better, i am not blessed with enough premonition to know i would fall over badly & end up like this.

Jack, don't answer this if you don't want to, but did they tell you straight out what was wrong or "um & ah" for ages? They keep saying "ah yes, this isn't just a simple knee injury, there's something nasty underlying it" hence the MRI scan; but they won't give me a clue as to what "something nasty (très grave)" might be, so naturally i imagine the worst. It's not easy living with the uncertainty.

zdt

they Umd and Ahd to the point where I was scared to ask because I didnt want to know, and when I did know I was scared to ask what they thought and didnt ask so at least I could truthfully say to people I didnt know

Personal opinion having been in and out of hosps alot recently: I never realised how bad it can be in here, and I'm appalled at some of the attitudes I came across. I currently loath the NHS

<<>>

I'm at that stage now. i really really do not want to go into that MRI tunnel. I know what they are going to say & i don't want to hear it

zdt

my partner has relapsing/remitting MS.

I find it quite odd, not because has the condition, but because he can deal with it so well to the outside world.

Yes, living in the uk, and having access to so many different kinds of therapy, both drug and otherwise,help, BUT, I just wish there wish there was something else *I* could do to aleivate the symptoms, surely I could (should?) be able to do something??

I just wish he was free of pain, I know it hurts! I can't do anything to help, massage is out of the question, hot bath exaserpate the situation. I don't know what to do.

Shall I just love him as much as I can and hope that that helps??

It will certainly help, it will help quite possibly more than any drug or therapy would, other than actual pain blocking medication. IMHO having a supportive partner is the single most important thing that keeps you going. Someone who loves you enough to continue doing so when you are having a really bad day & whinging like hell, who understands enough to know that..."ooh look, a visitor, put on the bright smile..yes, i'm fine!"

You save the reality for yourself & the poor long suffering partner.

What has been the pattern so far for remission/relapse? Does anything seem to trigger it? Sometimes simply the seasonal changes can do it; so maybe making sure woolly jumpers are close at hand in Autumn could help, putting on big silly woolly socks for him & joking about it; it's just general love stuff but geared towards making sure physically they are doing as best they can without making them feel helpless. It must be very difficult for carers to know what to do, i sympathise. I can't work out how to sort through someone elses psych probs without making the situation worse, dealing with cripplys who change from day to day must be a nightmare, we are not an easy bunch!

zdt

thank god they are free on the nhs

What? Difficult cripplies free on the NHS?

Or loving supportive partners?to queue up for one!

zdt

lol i mean scan's are free on the nhs

Hmm, yes, so long as you are prepared to wait about 2 years to get one, by which time you have probably either emigrated in disgust or died!

zdt

I only waited a month on nhs for mine .

I guess I was lucky with my MRI scan, too. That happened just a few weeks after the doctor said I needed one, but that might be because it was one of the hospital doctors who booked me in for it.

The other thing that's free on the NHS is DMD (Disease Modifying Drugs) for RRMS sufferers. I've been on interferon beta for 10 months and the cost is shared by the government and the drug manufacturer.

As for doctors umming and ahhing over a diagnosis, or healthcare professionals who don't seem to care... I'm a member of the MS Society and those are common complaints on their message boards. I'm a victim of 'not prepared to diagnose'. When given the results of my scan in 2001, I was told I had a 'condition which causes the myelin around the nerves in the brain to deteriorate'. MS wasn't mentioned. I tried to find out more about myelin deterioration on the web, but all that came up was MS. I thought it couldn't be that - they'd have told me if it was potentially serious, wouldn't they? Apparently not. I didn't find out I had MS until last year, when my attacks got more frequent and more severe. My GP told me and he was annoyed, but not surprised, that I hadn't been told at the hospital. Apparently hospital doctors aren't very good at giving clear diagnoses. In my GP's words, "A hospital doctor will tell you you've got a growth, a GP will tell you you've got cancer."

Does anything trigger a relapse/attack? I wish it was that simple. There are certain things that can make an attack worse, like stress or being too hot, but I don't know of anything in particular that triggers them. Sometimes all a partner can do is be there and, in hubby's case, help with my injections. (I'm phobic about needles and still freak out over my jabs 10 months after I started them!) Personally I find that it's good to have a shoulder to cry on, somebody to hug me, somebody to help me when I can't do things and, most of all, somebody to keep an eye on me in case I try to do things that are too much for me.

>>I'm at that stage now. i really really do not want to go into that MRI tunnel. I know what they are going to say & i don't want to hear it <<

the thing that made me so tetchey about is I half*knew* it was going to be bad, but everything seemed to take so long! I felt like my pain was being dragged out, and being in hospital is so isolating you get left to your own thougths and make up your own worse ideas.

I made the mistaking of deciding I wouldnt tell anyone when I found out, and I'd pretend things were fine and they were still running tests and I felt FINE *manic overhappy grin* Which washed for a few months I think before people began to question what theyd been doing all this time and I started to make things up to cover, and finally I broke down and told my partner who said by then he'd half guessed anyway

I wanted to save him the emotional drama, but it didnt work. In the end I found that its easier to face things with someone to lean on.

I think that's half our problem - we hide stuff from our loved ones because we don't want to worry/hurt/emotionally upset them.

(Or in my case, I hid it because I knew damned well if I showed any weakness *my* particular loved ones would take full advantage of it - but that's another story)

Oddly enough, when I found I *had* to tell my sons that I wasn't as fit as they thought and now needed them to help (- and admitted how scared I was that they would take advantage of that fact) they and I became much much closer emotionally.

In a strange way, we finally got to know each other. We got onto a new level of understanding, and it felt, still feels good.

I've found, that if everyone involved knows the situation as thoroughly as they can - and it flucuates from day to day! - then very seldom is there anything they/we/I cannot cope with.

There is a horrible sort of "guilt" factor too. The other day viking said to me "I couldn't stand it if you were to die, it would destroy me"

So my response has been to distance myself from him & try & send him back to his ex, who is reasonably healthy. I have horrible visions of having to hide stuff & in fact be the one doing the supportive stuff, when in fact it's me needs the support!

Jack, glad you did finally "come out" with this, brave decision & very glad you have supportive partner. If you ever fancy a chat on MSN, feel free to contact me, if it says "busy", try anyway!

zdt

This Viking isn't doing you many favours by coming out with stuff like that, really, is he?

It really isn't *your* problem that he wouldn't be able to cope!

Whats he expect? That no-one he cares about is never going to die??? (I'm sorry; that sounds harsh; but it *is* a harsh fact of life. Everyone dies sooner or later)

My lads went thru the same sort of crisis - specially the youngest one; I told em it's hard to Kill a Bad Thing. Then I got a bit more reassuring and said even when I did pop my clogs the fact I love(d) em wouldn't change, I just wouldn't be around to tell em - so p'raps they'd like to start believing it *now* and enjoy the fact. It seemed to help them come to terms quite well.

I'm afraid that when I had that sort of emotional angst with the last live in I knew - *my* ailment was a direct affront on *his* well being it seemed.

(Excuse me?)

I cut my losses, and moved on out. I simply couldn't afford that sort of extra emotional angst to take on board.

We still remain friends, and he visits me occasionally (usually when he has his own crisis)

- but as soon as he starts whimpering about how worried he is...and how he's going to cope if I get worse... I suddenly find an urgent need to ask him to leave, because I need a bit of a lie down. I don't think he'll ever achieve full emotional maturity, and harsh as it sounds, I know I can't expand my energy on offering him the reassurance I need for myself.

With my kids, it's slightly different - they're not (quite) yet fully fledged adults. And it's my job as a mum to do all I can to help them achieve that status. I'd say in another 2 or 3 years, that'll be acomplished. As it is, their depth of maturity daily astounds me. Somewhere in the future, they'll be instinctly good, supportive partners, I hope.

But then, thats just the way I dealt with things - its different strokes for different folks when all's said and done.

If I ever found a partner who was emotionally comaptable with me, and I with him, then I'd consider myself extra blessed - never think for a minute I don't realise the value of a supportive partner(no one else but they can say the right things when stuff goes manky and things feel grim), and NEVER think I don't envy - in the nicest possible way -anyone who shares life with such a gem

But personally, and so far, I've found it much easier being on my own.

Its the guilt thing I hate, I'm not scared to die. I'm more scared of the pain it'll cause the people I leave behind.