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

"The Flamingoes of Angoulême"...sounds like a good title for a novel...

Terri wrote: "how dare she have a love life, and if she does, it's THEM who should be looking after her"...It's as if the doctor believes that you, as a disabled person, exist as a sort of vanity project for your pet able-bodied persons, who are saving the State some money.

Same as the British System, really - GPs and Government alike.

In my case, I have 2 sons, who have been acting as unpaid carers for me for the last 3 or 4 years (probably longer, if I'm honest)

But they're able bodied. They're familly. (And I must have had some form of love life in order to explain their existence, I suppose, at one point in my life. Or two, if you like)

Therefore, I don't*need* a carer because I have 2 other able bodied people in the same house as me. I'm lucky, they *do* actually care - a lot, but there are some things I am NOT happy about experiencing with 2 teenage sons. Getting Mum out the bath is NOT a task for a son,(nor the fainthearted, I assure you) nor is helping her put drawers and tights on, etc etc. I'm sure I don't need to paint a picture. Fortunately, I'm not quite that badly off (yet) tho it's been a near thing in the getting out of the bath lately. Thank god they had a couple of girl friends in at the time... but ..well.. bang goes the Mother in Law cred for starters!

I have to make a joke about it, because if I didn't I'd start howling and never stop. Admit to knowing one able bodied person and it is automatically assumed they are not only willing but able to "care"

Tell TPB you don't know any able bodied people, or don't have another adult in the house (and up till July of this year, neither of my lads were officially "adult") and the attitude is one of disbelief

In some ways its a totally No Win situation for the individual..whilst as Tig rightly says, saves the State some money

The UK Government saves an absolute fortune by relying as much as possible on unpaid carers and I have heard that there is a big push on the way to increase the contribution of family carers in the future, not only caring for less able family members but the older generations too!

LW, I too hate the term handicapped. I don't much like disabled either but where does PC stop these days. I use less able above because it is a catch-all term. I have also come across differently able which seems awkward and still identifies the person as different.

Anybody got any thoughts on this?

turvy(having a bad week for pain)

Me too. Hence the anger. Difficult to appear bright smiley cheery all the time when you feel like crap; even "physically challenged" people have off days.And doing the whole thing all alone is damn near impossible sometimes.

zdt

Terri will hate me for this, but she really needs help, does anyone know of any UK based charities that we could contact? Maybe to bring her back and set her up somewhere warm where she can do more than just survive?

Email me at [email protected]

I wish I knew of someplace Kaz, but am just not familiar enough with helping organizations in Europe.

I don't think Terri will be mad, I think she would be glad that you want to help her. Good luck in your search.

The pain this week has been awful for me. Anyone with Ankolosing Spondylitis will tell you (hopefully it is not just me) that if you have even a tiny bout of food poisoning, it sets off an artheritic "Flare". This is when most joints in your body feel like someone has put a red hot knife into them, and boy - has it kicked off this week.

Coping during a "Flare" is never easy because I get very short tempered and just want to lie down for a week until it passes. On the plus side though, history has taught me that they normally only last about 5 days, although I did have one massive once back in the 80's that went on for a year. That happened after a visit to Sri Lanka and the food poisoning I picked up there - apparently the bugs were still active inside me for a year! One good reason never to go back, I think.........

Got to say though that I am really pleased that this thread has taken off and is helping so many people in our position. Thanks to all the contributors!

hey doc

Yes, very useful thread; i am getting a lot of supportive stuff on hootoo from this and also the "how much do you drink," one; both subjects thatpeople in general tend to steer clear of.

Good to see people talking honestly about problematic stuff; not in terms of whinging; simply stating their reality & maybe practical advice & general support.

The ankylosing spondylitis; are you on medication for it? I had a friend who had twin Aunt & Uncle with this; Aunt decided to have no heavy medication & Uncle decided opposite despite being told it might shorten his life; he wanted to stay active as possible. This was years back, both died within 6 months of each other aged around 65; i wonder if medication stuff is different now?

Do the rest of you find Winter cold weather incredibly difficult? I do!! If you can't move around much, obviously you get colder & wrapping up in many layers sounds all too easy...unless you can't actually do things like one pair of socks, let alone three plus get shoes on & trousers over the top of swollen joints; plus of course cold & damp starts *yippee* arthritis stuff on top of everything else!

It seems remarkable that "disabled" people here (France) get absolutely no help with heating bills; i applied; got told "the only cases we help with are people on ventilators or premature babies in incubators at home" Is this the case elsewhere? I read that Scotland has a scheme for subsidising heating bills; dunno about anywhere else though; have googled but not come up with much.

zdt

While we're on the subject of cold, and things related to it, I've noticed something over the past week or so. One problem I've had to deal with for 6 months is painful hips. About 10 days ago I got flu and the pain went. At first I thought it was the flu 'remedies' 'cos they contain paracetamol, although paracetamol on its own doesn't usually do much for the pain. Then I came off the 'remedies' and the pain stayed away. Now I'm recovering from flu and the pain is coming back, although not as bad as it was - yet. Has anybody else ever experienced anything like this?

The annoying thing is that I was offered vaccination against flu as I'm classed as 'at risk' - I have asthma and it's best if people with MS don't get flu as it can prompt a relapse. By the time I got round to doing something about it, the GP had run out of vaccine. You could say I've done my immunization the hard way. The flu was bad enough, but the past few days have been one long asthma attack. Next year I'll make the appointment as soon as I get the letter!

Great debate about flu & other vaccine in nerve stuff; there are many theories that MS /ME was actually triggered by a flu vaccine. But of course maybe it was triggered by the virus itself "waiting in the wings" I have been strongly advised *not* to have it despite having asthma; because the nerve thing/immune system/allergic reaction balance is so bloody complicated nobody can work it out & most opinion seems to err on the side of "add nothing to tip the balance!"

Oddly i seem far less affected by colds & flu than other people; i definitely pick up the bug & feel lousy for a day or maybe two; then shake it off; possibly side effect of my immune system being hyperactive is it eats up nasty bugs very rapidly (OK, & another chunk of myelin also for dessert)! for the extra leucocytes!

zdt

Actually, research has shown that MS sufferers are more at risk from the effects of flu than from the vaccine. People who have the vaccine suffer little in the way of bad effects, but flu is likely to trigger a relapse. That hasn't happened but, like I said, the past few days have been a non-stop asthma attack. That, in itself, is enough to make me wish I'd had the vaccine.

Hi everyone

Long time, no chat. Just wanted to talk about my mum regarding long term illness. She was diagnosed with Pancreatic cancer last June, and has slowly descended since. Right now, she is in hospital near Watford in a "Hospice" ward. I do not know how long she will be there. Suffice to say, she is for now in the best of cars, so my major concern is for my father who has lost a stone in weight and is not eating properly.

I have asked them repeatedly to come stay with us and the kids, but pride and god knows what else prevents them. I am a realist and I know she does not have long left, but all I want to do is take care of them.

I didnt metnion that she has a secondary tumour in her brain which is causing blurred vision and general instability when she walks.

I would really appreciate any help from anyone who has experiance of cancer in their family or friends.............

Thanks

Hi there..i can't offer any advice,but i can offer a friendly ear,when you need one.I'm so sorry about your mum,and it sounds as though your dad is trying to look after her,and not thinkng about himself.

All i can offer is a ,and a chat when you need one.

Would really appreciate that Smurffles - found out today they are discontinuing the Chemotherapy as it does not seem to be helping.
God only knows how long she actually has left

I'm very sad for you Doctor, I lost my mom to lung cancer on Feb 8th this year. It's still a bit too recent for me to be able to formulate much in the way of advice, but please tell your dad to take care of himself. Your mom wouldn't want him to make himself ill.

Sometimes a bit of tough love may have to be used, tell him that the worry over both of them is making you ill.

Practically, my experience of hospices; with mom, my late father-in-law & friends I've lost, tells me that your mom is in the right place. With the best will in the world we couldn't have managed to nurse mom at home in her last fortnight as the cancer had spread to her brain as well.

Are you geographically close enough to visit every night? Unfortunately neither my brother nor I were, but we were there at weekends to spell my Pa and of course we were there for her at the end.

Mom seemed to get a lot of comfort from talking about the past and also in arranging things for when she'd gone.

If you'd like to talk off-site, there's an email address on my space.



Granny

Hi - Doc - sorry for your grief. I've no experience of what you and yours are experiencing, but if it'd help to talk or just have a rant, email is thewitcheryatemasan.

For what it's worth, I'm thinking of you.

Hello there granny...please accept my condolences...We lost mum just over a year ago,so i understand how you're feeling

Doctor,i agree that your mum is in the best place,there are aspects of her care that the carers are trained to cope with,and you would find too hard..no matter how much you want to help.Visit when you feel you need to,and if there is anything you feel you need to know,don't be afraid of asking.Remember to look after yourself as well!

Thankyou everyone for all your offers of advice and your kind comments.

I spent the day at the hospital today with my father and brother to speak with e consultant in charge of her treatment. With a pituitary glad tumour in her head and the pancreatic cancer, you can guess that mum is not in the best of health. The Brain tumour is currently making her eyesight very blurred and she is petrified of losing her sight.

We had a meeting with the consultant and his team who agreed tht we should treat the brain tumour first, as all other options for the pancreatic cancer seem to have run out. One glimmer of hope is that he has said that if she can show a marked improvement in her health, then he will re-instate the Chemotherapy.

My father is at his wits end and it was all me and my brother could do to stop him raging out of control. He has never had to deal with this kind of situation before and he has no clue how to deal with it all.

His reaction was due to the fact that having been promised this meeting, we were sitting in the hospital for approx 8.5 hours wating for it. This almost proved the breaking point for him.

I will be in touch with all those who offered to talk off off here, but right now I am looking for any private medicine options that may be available.

Thanks again for all your support - for what it is worth, I had my fifth hip replacment operation at the age of 48 in late November last year. I am still on stick(s) as needed and am trying to juggle mine and everyones expectations.

Life, eh?