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

Well, I have rheumatoid arthritis (I was first diagnosed at 19 years old) and properly diagnosed at about 26 (by which I mean, the doctor did tests and gave me a prognosis.)

But I see from what I have read here, that I am extremely lucky compared with everyone here. I've been in remission for most of the last 18 years, and all I have to put up with is the nagging unremitting pain! That, and a problem with stairs, which makes me look lazy, when I take the lift... because I have little disability and no *visible* one.

That being so, I have to say that I admire the courage and strength of everyone here. If things get worse for me, and they probably will as I get older, I will remember all of you, come here, and be comforted. For now, I wish the best for all of you!

Hiya all, can i join in!!!

"Course you can!" says abbi, as co founder of De Myelin Nation you get a few brownie points!

I have something that gets called various names, somewhere buried in De My Nat is a copy & paste definition, but the "user friendly" term; oh joy, is "ascending paralysis" ie first the toes die & then you wait for it to creep up further & further. Also known as polyneuritis, also known as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy: if typing that lot doesn't induce muscle spasms, i don't know what will!)

Mainly affects legs at the moment, lately the back also; numbness, tingling, spasms, cramps & out & out bloody pain, it varies minute to minute.

Obviously, not being able to tell what the hell is going on with your feet means you tend to trip up & bump into things, which then leads to other injuries. Currently pretty much totally housebound 'cos i did my knee in, it's not broken but they need MRI scan to say what is actually going on & are making unpleasantly grim noises.

It's horrible. I live alone & have to endure begging to people to take me shopping (ever found anyone who offers?)can't keep the house clean, often simply cannot roll out of bed & to the loo.Now at the stage where NO position is comfortable, including in bed.

No, i am not coping well. i dread the future, mainly 'cos i have absolutely no family & few "real" RL friends. Like many of you, i take refuge in 'cos the painkillers simply take the edge off...te he, and i would rather stockpile.

There's a thread on De Myelin nation called "issues of support" on much the same lines as this one, i will try & find it; but fingers seizing up a bit.

I think what amzed me most was i always assumed people went out of their way to help crips like us & that the crips main problem was being patronised. It's NOT true! You have to fight like buggery to get any practical support, which is exhausting in itself & most people just really don't want to know, certainly they don't understand what it's like to live constantly with pain.

All that gets me through is sense of humour, bloody determination & support from "you lot" on here & *very* occasionally RL people.

And Yoda

zdt*by the way, virtual party on my journal space "EYE EYE!" thread, all welcome!!! let's dance!!!

Thank you Della
May you long stay free of any additional pain.

******
Sorry in my ramble I forgot to say I took anti-inflamatorries for 2 decades. Then Tyenol.
Cannot take either one any longer.
Cannot take the shots , Entracept or prednisolone(sp?)

I take rather heavy pain killers and several experimental medications when they've popped up if I am *game for it at that time.
Uhg some of the experimentshave given me quite odd side effects. Most never went to market because of the side effects

I am headed to surgery again soon.
MRI first.

Back to Terris party on the Eye?Eye thread!

Having a sence of humour does help , and to all of you out there that say's one day we wont wake up that is very true but till that day come's we all have to get on with it . take your mind of you for one moment and think about your family grand kid's would they wish you away .

True it's good to think of others you will affect and a sense of humor is vital. Still more of the same things the healthy need to look at

There are worse things than death though ;to some of those suffering.
Some families would not begrudge a member taking their own life due to suffering or allowing infection or complications to go untreated in order to be released from their suffering if they are ready.

I will have a way ready but hope I will not have to use it.
Most people die of pnuemonia. If you want nature to take its course ( so to speak)and have pnuemonia refuse treatment and you'll more than likely die. Depending on where you live and the laws you may need to have all of this in writing and then hope your wishes are followed should you be able to speak for yourself or not.

If one is able to speak for him or her then they are not ready to die .

With respect for your position and my personal feelings, I'm not going to open this particular can of worms any further.
*closes*

Best wishes to you

I have Muscular Dystrophy 'Becker type' well you just cope it is a bummer but hey life goes on I smile and laugh everyday and have a loving and supportive wife.

I address myself to the Doctor and Evadne: don't fear the wheelchair. For many years, I did just that. I suffer from muscular dystrophy, and I'm diagnosed as Becker type. Over the years, especially from about 1990 onward, walking became more and more difficult. I began to use a cane, and most significantly, I began to restrict my activities to places where I did not fear falling down. I could drive to a shopping center, I could walk happily on flat surfaces with a good traction. I didn't want to go to picnics, or near trails, or to walk in the dark. Anywhere where my ability to cope was reduced by chaotically moving people or by doubtful traction, I would try to avoid going. This meant that I went to fewer and fewer places, discarding them from my life, no matter how pleasurable, thinking: "sorry, that's too strenuous for me!" It was only after I got my wheelchair, after the point where I felt I had to give up, or maybe to give in, (and I do not wish to denigrate what in prospect looks like a horrible place) that I realized how foolish I had been to fear the wheelchair. When I used the wheelchair, I could again be comfortable outdoors and in places where there wasn't a good place to sit down. Soon after I got my wheelchair, I was able to go to a street festival full of music and crowds. I would have categorically refused to go to such a place when I was tottering around on my two legs and my cane. My advice is to get that wheelchair now, when you can still get out of it, and learn how to use it as a tool. It is often an inconvenient tool, and you might need to have someone else help you transport it or move it around if you're not strong enough to do-it-yourself, but its usefulness is so great in keeping diverse places and activities in your life that I advise you to get one as soon as possible.

As you might guess, one of the ways I cope is to try to be useful in any way possible. I call it my cosmic mission. Is it information you're looking for? I might have that information for you. Need someone to watch the pot and tell you when it boils? I'm your man. Looking for diversion? I saw this cool web site the other day, it's called Hitchhiker's Guide to the Galaxy. This is not to say that I'm not often depressed or sad or feeling unhappy because I can't do the things my heart wants to do (in other words, setting myself impossible tasks).

I do keep in mind that other people or in the far more trouble and pain that I am. To those of you who have intractable pain, my heart goes out to you. I may have to sit in my power wheelchair all day, but I am not in pain. Pain kills long before you die. I saw my mother go through pain. It broke her heart, it wounded her spirit, and sapped her will to fight to see the next day. That "fighting to see the next day" is how I keep going. If there is a tomorrow, I might be useful. I might kiss my wife, or my kids. I might be cured. I might get a chance to share by writing to you all. I will see another sunrise. Those of you in pain have hopes just like mine, and you fight to see the next day, just like I do. Your uphill climb is so much steeper than mine, but but you persevere nonetheless.

Years ago, the Kings Singers sang "The New Day", which includes this line:
"Hope is my philosophy -
Just needs days in which to be.
Love of life means hope for me,
Born on a new day."

Hi Great Omnipotent Tigger
wrote;

"It was only after I got my wheelchair, after the point where I felt I had to give up, or maybe to give in, (and I do not wish to denigrate what in prospect looks like a horrible place) that I realized how foolish I had been to fear the wheelchair. When I used the wheelchair, I could again be comfortable outdoors and in places where there wasn't a good place to sit down. "
Great Omnipotent Tigger

*******
I am so glad you added that!
People have gotten much more out of life by giving in ( not at all giving up)to a chair to mobilize. If you are staying home or motionless because of pain just try a chair. You can rent them sometimes. It can become the freedom you felt getting your first bicycle.

I want a motorized something. I want to be able make a breeze and have some speed again! I was used to my hair flying in the wind and moving much faster most of the time. Being slow is an unbelievable stressor to others and not any fun for the slow moving one.

Same goes for being in water you can do things in water that are not possible out of water. I cannot tell you what joy I get from a simple bounce in water! I dare not bounce up and down out of the water.

I am in pain in or out of the chair so it took missing out too much to consider trying one. You hear so many people say no way to a wheelchair. People often feel it is giving up but as G.O.T. prety much said it is giving in to; reality and mobility issues NOT giving up. It can give you back some of what you have lost so giving up can equal not trying a chair.

Odd to put that up against the invisible disability person who is not understood because nothing is wrong at first glance. I went through that period too, having been struck by lightning. There is usually a painful acceptance for both the obvious and unseen situations, neither is better.

You have to do what you can to keep moving and connected to people or nature or whatever your desire.
It helps to have an inventive mind or problem solving skills. So many little irritations can only be solved by you. It helps to eliminate as many as possible wherever possible.


I think there is a lot of money to be made in adaptive muti-use furniture and equipment. I would love to make life easier and enlarger for others. A wheelchair can do that , at least try new ways if given the opportunity, it just may work. There does need to be more public and business and nature access for wheelchairs.

Yup. I am now at the stage that if someone was to give me a free wheelchair i would with absolute relief. Very tired of people saying "But there doesn't seem much wrong with you, you can walk!"

Yes, i can. But it is incredibly difficult & bloody painful. And there seems no way to explain to people "OK, i can walk *that* far 'cos it's on level ground & i have done it before & know every little hazard; but NO WAY can i get to there 'cos its up/down steps/slopes/it's wet & slippy/its simply too far"

"but you don't use crutches!"

Nope, ever tried carrying two bags of shopping with crutches?"

I am now simply moderating all activity so as to minimise moving around, which of course means muscle wasting stuff. Anyway, my disability benefit stops in a couple of months, after that i am expected to get a proper job, they must be joking! It takes more energy than i have simply to keep going now, how on earth could i fit a job in also, other than one based at home, online.

I have suggested this, they counteracted with "ah, you need a shrink, you are obviously depressed to suggest this, you need to get out & about more" no practical help offered as to how this is possible "oh, use the" great, how do i get to the bus station????

GGGGGGGGGGGGGGRRRRRRRRRRRRRRRRR

zdt

Unlurking for a moment, this is a very interesting thread.

I've known a few people with disabilities that aren't immediately apparent - one, in his 20's had arthritis such that he needed a long shoehorn to put his shoes on...took a while to get anywhwere when we went out, but otherwise didn't appear to be affected. He did tell me, though, that he was in near-constant pain from it, which must surely affect your outlook.

I also knew a woman who had constant face pain, the cause of which was unknown. Her face literally ached all day, every day, and the doctors couldn't figure out why. She had specialist pain alleviation and volunteered for practically every new therapy that was available, in the hope of finding some relief. She suffered from depression as well, largely as a result of this.

My ex-father in law killed himself because of the pain he suffered as a result of the many illnesses he had. None of them were killing him immediately, but all would have done so eventually (diabetes, cancer, PKD) and he simply wasn't prepared to put up with being in pain for the rest of his life (he was 68 at the time).

Now, as I get older, and find arthritis starting, I wonder...will I be able to cope with this? Do we have the same level of coping as people who have lived with pain all their life, or are we now so pampered and mollycoddled that we seek immediate answers and cures? This worries me, with the current attempts by certain groups to make euthanasia legal...people are less able to cope with pain and suffering than they are used to, and "the easy way out" might seem more appealing.

I have no answers, just wanted to say that this thread is being read by probably most of the people who may not have a direct response to the question asked, but that it may affect them in indirect ways.

Hope some of that made sense...

RF

I don't think anyone can answer your question,as we all tolerate pain at different levels.I think i must have quite a high pain threshold,and i haven't always eperienced pain.I have prescribed pain medication every month,and try really hard not to take it unless i'm in agony.
It might sound but i found over time that i accepted pain gradually,and incorporated it into my daily routine,i know the things that will give me more pain,and don't do them.I adapted to the idea that trying to take curtains down,or sweep a floor would cause me to suffer,and it became routine to do it just before bedtime,so the pain had all night to ease.Using the computer gives me terrible muscle spasm,so i use it rarely....i have a wireless keyboard,and sit in my chair.I think most peope that have posted would say tht they have adapted their lifestyle to accomodate the pain.....and not even really had to give it much thought!!

I'm not sure how to say this without seeming to be rubbing your noses in it (which I swear I'm not), but reading all of your experiences made me feel incredibly lucky.

It's also very inspiring. Keep fighting, all of you.

I think it's great that people are looking & lurking 'cos the more "normal" people who read about "us lot" the better, the more information they will have, i bet lots of folks on here have bumped into one or other of us & hadn't a clue they were chatting to someone "with a disability"!

The internet is great for this, so long as the person is physically able to type & stuff, it's a window to the world.

Very true what you said about arranging things around the pain stuff; you get to know what times of day are better, also most of these things have "good" days & "bad" days, so on good days what inevitably happens is i go zooming round catching up on all the stuff i haven't done..uh oh, if you don't pace yourself, there is a backlash; vicious circle!

One positive thing is that when you DO have a good day, wow, you can feel high as a kite, you really appreciate little things...like for instance i just had 4 hours continuous sleep & got down the stairs in almost normal steps, not "baby steps" YAY!!

zdt

<>

The husband of a friend of mine, is in a very bad way. He has had a heart bypass, and takes Warfarin, a blood-thinning drug, so he can't take anti-inflammatories, for his unspeakable pain. Raewyn will eventually have to give up work to look after him, much as she doesn't want to have to - her work being vocational assessment and assistance for people in rehab after spinal and brain injuries!

Perfect example of how one disability messes with all in the family.

My brother had a stroke and his wife is finishing nursing school.
The family is not at all confident she will be staying with him.
She has said she will not if he needs total careHe does.
It is a terrible strain on all when total care or just constant companion is needed. So many leave.

I am a lucky girl to have my guy still with me.
If I may say, he is somewhat lucky too in small ways
Best of luck to them.
The care takers need total breaks or they will not make it.
Many a so called healthy caretaker has died first.

Forced immediate life style changes are the most stressful of all.
I have considered myself lucky that things gradually got worse for the most part. After all I have been through it is still hard to imagine being OK one day and totally different the next as with so many severe traumas and other problems.

That's sad for your brother, abbi. Does he get respite care from the Health Department, as he would here? (Do you have a Health department in the USA?) Your sister-in-law must be having a very hard time.. but I whilst I can see her point of view, I can see your brother's as well...

My brother took care of our mother because she had a condition called Polymyositis, but eventually, she had to go into geriatric care. (He was only 18, and it was too much for him.) Mum died not long after, which was a blessing and a curse for him, because I got the impression he felt guilty about not taking care of her, although to expect him to do so, was unrealistic, given that he was only in his teens.

If anything happens to me, I absolutely don't want Jim, who is the same age as Garth was when Mother died, to have to take care of me, student though he is..

The care thing is the biggie. There's a thread on De Myelin Nation about it. It's incredibly difficult when you don't actually have a family & have to depend (huh! you can't!) try & get support in a patchy way from various friends if you don't have a partner.

I find myself wheedling & hating it, going through my address book & thinking "hmm, nope, used that one last time, who "deserves" to be hassled next? And some people use the fact you need help as emotional blackmail fodder which makes me FUME, so then you get the "oh, people with handicaps are grumpy & depressed" syndrome. NO! We are often simply just very pi**ed off & frustrated 'cos there should be ways of getting help without resorting to this.

zdt

That must be terrible, terri... Do you have the right to respite care from the Govt? You're in France aren't you... I assume you're not a citizen, so it must make things much more difficult for you.