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

I was chatting with another disabled lady on here about how disabled people cope with it all. How they manage the apparently mundane task of “Keeping their chin up” and dealing with it. Her and I would very much like to hear from others similarly affected and how you deal with it, if you would like to join in. I toyed with calling this thread “Cripples Corner” but decided that perhaps this is not the place to label people with my brand of humour. So – if you are affected with a long-term illness or condition, come in, sit awhile and tell us how you do it.

Me? Well, this is just a fragment of my story…………..

I am disabled. Probably nowhere near what some of our other contributors are on here, but I have been deteriorating since the age of 10 and I am now 48. I started off with Stills disease, which then graduated to Ankolosing Spondlylitis. I have had four hip replacements, and currently awaiting a fifth because the fourth went wrong within six months of the operation. That was four years ago and I am still waiting. I am guessing that I have been on painkillers 24/7 for longer than most of you have lived.

How do I cope? I don’t is the honest answer. Oh yes, I appear the very epitome of the Churchill spirit, stiff upper lip, big boys don’t cry and on occasion, loud and the life and soul of the party. My catchphrase is “Mustn’t Grumble”, normally said when the pain is unbearable but nobody must see.
It makes people laugh and feel better you see. I went through what I dubbed “The Dark Years” from 1990 to 1994 just after I got divorced. The divorce was largely down to me refusing to have children, as I didn’t want to pass this vicious disease on to anyone. That decision was taken 10 years earlier when I was taken in for my first hip replacements – and I was a complete arse about it. It was not fair I said. I should be out clubbing and having fun I said. I should have been a Flight Engineer, flying round the world, having fun with a stunning woman at every airport I said. Instead, there I was in hospital having pieces of me cut out and replaced with steel. When I awoke, I was awful to the staff because I could not come to terms with it – having “Those” inside me instead of my own bones.
Eventually, a nurse took me in a wheelchair up to the children’s ward and showed me poor one and two year olds, bent and twisted with arthritis. The nurse told me that they would never have half the life I had and that I should be grateful. Tears flowed, and I have never complained since, as there is always someone worse off than you. I swore that day that I would never risk having a child in case it turned out like those I had seen in the ward. How ironic that today I have two, but that is a whole other story – this is supposed to be about how you cope, not a life story.

So – the Dark Years. During those, I coped by divorcing emotion as well as my first wife. Nothing touched me, and work became somewhere that my alter ego went to get the cash to pay the bills.
Nobody knew that at night I would go home and scream at the walls until I lost my voice. Nobody saw me at weekends when I would close the curtains and not see daylight until Monday morning, or the bottles of booze that I drunk to ease the 24 hour pain in my joints. I hated looking at myself in the mirror – I saw a twisted monster, no movement in my neck and walking more like a Frankenstein creation than a human. I even used to joke with people at work that I was a “Cyborg” – part machine was exactly how I viewed myself with my artificial hips. During this time I tried booze, drugs (prescribed and otherwise) and basically anything that would blot out the pain, but it didn’t work too well.
To cut this long story short, I eventually met someone else and she wanted children. Nightmares of the kids I had seen in the ward were described to her and my fears for how any we had would grow up, but she was not put off. We got married, and eventually our two were born. Perfect. At ages 4 and 18 months, they still are but I agonise every time they fall or complain of a “Pain”.
How do I cope now? Well, again, I do not really cope. I appear to cope for the world’s consumption, but within there still exists this ball of primal rage at having this. Music works and calms me, John Barry, Secret Garden and other “New Age” stuff is very effective. The odd bottle of Southern Comfort also has a proven track record in reducing my concerns for my children’s future.

I do not think that I will ever truly cope with this and my eternal nightmare is being confined to a wheelchair at some point – but I dare say that if that happened, I would manage somehow.

I think the secret is that however bad you feel, however much you ache or however much you wish you could throw your crutches off a cliff for ever, there is always someone in the world worse off than you.

It is that thought that really keeps me sane – and I can only marvel at how they must cope with their burden.

Your turn now........and by all means make it as funny or as serious as you like

Well, as I often get pointed out to me... my biggest disability is having been born in Suffolk.... I'm lucky in not having to have any continueing medical treatments, though I was in hospital for most of a year anad a half after I had the accident (was hit by an articulated lorry whilst being a pedistraian, but luckly it only hit my head, and nothing therefore of any great importance ) I lost my sight as a result of that, and also as a result of the brain haemoridge (a word I still can't spel), which occured as a result a few months after I came out of coma in terms of 'coping' I just carried on (once I was well again), as I had been before, and went back to the pub restarted A levels at college, went to uni, then off to another uni to do a MSc and then back to the pub I dunno though... I'm just me (and I can't help it )

How do I cope?

I get bloody angry at the sheer injustice of the whole damned situation (although I don't think even anger could cope with being born in Suffolk

A bit of background - I have a degenerative spine, with arthritic bendy bits - joints to you lot, and by god if I could smoke one without throwing up I would do - purely for the THC!(honest) And also, because I am arthritic, I have the joy of an Irritiable Bowel, which, like its owner isn't so much irritable but bloody furious most of the time.

So I get angry, because at least if one is angry, then there's a form of energy to work with, to be creative with...it doesn't have to be *aggresive anger* as such, I find using the anger to kick start my mind into moving; it is oh sooo easy to fall into the cosy little trap of losing interest in anything but the very local (ie, oneself) because there is so very little physically, I can do without being in constant pain.

It can safely be said I really don't get out very much


My body is confined by 4 walls most of the time, and a walking stick - and like the good Doctor, I can forsee a time when I'll have to admit defeat and become wheelchair bound. And like him, I too eat painkillers like smarties - infact, for all I know, they *are* Smartie, because on most days the blasted things have all the effacy of an udder on a bull. Personally, I find alcohol really *is* the answer, but alas, Vodka isn't generally supplied on the NHS

What I find difficult is coping with is the pain - today is a particually manky day, and I've found, over the years, that if there's too much pain, one simply cannot concentrate - which again, is frustrating, because I'm absolutely *certain* that I've a point to make.

Right this moment, however, I cannot remember exactly what it is

And the other way I cope? I laugh at the absurdity of it all. I stick two metaphorical fingers up at my situation. I parody the whinging, I make rather dark, sick jokes. On better days I tot up what I can do, and conveniently ignore all the stuff I can't.

And it isn't easy

I've tried positive thinking. I've tried religion (came to the conclusion I don't want jam tomorrow, thank you, I'd like some today), I've tried every alternative medication and therapy I can afford - and I try not to remember that when I could work, I was a damned good massusse and could certainly alleviate, if not cure my own problems, if only I had arms like Twizzle and could reach my own back - there are some jokes that are just *too* dark to crack. I'm down to operations now - and so far, they've merely exacerbated the problems and caused more. The NHS, I regret to say, was always my final option.

I don't cope, really - I just get on and do all I can, and try and be kind to myself when I simply can't.

Losing the feelings of guilt for being crippled, and therefore, - at least technically, on a physical basis - I am not much use to society as a whole (something I feel particually strongly about) is a biggie.

Not being there for my two lads is a constant disappointment, more to me, than to them, I think. (There are times when its as much as I can do to keep awake, thru the exhaustion pain gives, let alone make the effort to spend quality time with them)

I'd have liked to have been able to get out and work and buy them more. I'd have liked to be more physically fit so I could play football with em as youngsters, and get involved more in rough and tumble sort of games. I, far more than they, resent that I am obliged to ask them to do my lifting and carrying.

On the plus side..not everyone has the privilidge of lurching around on a walking stick with the legend emblazoned on it

*MY OTHER STICK IS A BROOM*

Every cloud, eh?

And long may that stay the same,2 legs, or we'd have to find someone else to blame for everything...

I was diagnozed with arthritis at age 30, (both hips, left knee and spine) and now I have fibro fasciitis - a crumbling neck. I'm 50 now. It's painful and I have constant neck/backache and walk with a limp in cold and/or damp weather.

How do I cope? Painkillers, sleeping tablets, and knowing that one day I won't wake up - am I alone in looking forward to the day I die as being a release?

GB

Ah..

just remebered the point I was trying to make

Whilst I can appreciate the reasen that nurse kindly wheeled The Doctor down to see those poor little mites with arthritus (look - there *are* people worse off than you) - would I be right in surmising that it had a hugely profound effect on his decision to have children?

Frankly, it sounded like a huge bloody guilt trip to me. For what its worth, I reckon a person's quite entitled to be a bit of a git and a grump whilst coming to terms with what is, after all, a life changing situation.

Of COURSE there are people worse off than us - there're millions worse off than me, but frankly, right this minute nurse, I'm none too concerned about their problems, I'd like to have a bit of "me" space and get my own head round the idea that I'm never going to have the sort of life I'd like. Once I've sorted the "me" bit out in my head, THEN - and only then, can I find space to care and be concerned about others.

Of course, no-one should be indulged in their stropping, either - that's patronising and enabling. It also encourages infantilization of the chronically disabled, and prevents them "growing" as a person, which is the aspect of being disabled that I fear the most.

I don't want to be patronised, nor do I want your pity - neither is useful to me, and frankly, it's not doing the pity -ee many favours either, apart from giving the wonderful warm virtuous feeling of being nice to a crip, and giving them the false belief they're being kind, when in actual fact they're being a pratt.

Practical support, acceptance as a productive part of a community...they're the things that help a recalcitrant diabled person like me

Oh

And possibly a V&T?

Re GB's post - no, you arn't alone in knowing that one day you won't wake up

On bad days, I often find the thought very cheering.

And I admit that I have enough painkillers stashed away, that should my pain ever become too much, so I at least have the final say in exactly how much pain I am willing to tolerate.

Bookmarking.
I have talked to several people here about these things, mostly in email.

I will hopefully get back to post on a so called *good day very soon!

Hmm, the decision to have kids (after effectively ending one marraige with point blank refusal) was not easy and remains a huge issue for me.

I insisted that my then new wife to be accompany me to the hospital, to meet the doctors and be given all the facts, risks, etc however grusome.

Only when she was fully up to speed did I then ask her again if she still wanted to have kids with me - and that if she did, she would need to understand that I would constantly be worried what would happen with them.

She said yes, so here we are with two stunning little girls. I love them to bits, but I watch for signs constantly. My biggest nightmare (above and beyond ending up wheelchair bound) is that if they do get affected, they turn round and ask me why I had them if I knew this would happen. I have no answer to that and probably well loved children would never turn round and say that, but you never know. It tears me up inside.

On the plus side (there is one!) when I was much younger and dating, I always joked with women that having artheritis was a benefit as "everything" was permanently stiff..........
Worked a couple of times too....

I thought I'd be honest about lurking this thread. There's nothing I can contribute from personal experience, but I suspect that might just be a matter of time. There's also a few people I know out here in RL who could do with some additional coping mechanisms... There might be something I can take and pass on.

I think really, I cope with my disability in much the same way as I coped with life "before" the body packed up big time - I looked at each situation, figured out what i *could* do about it, what I couldn't do about it and then sort of came to a conclusion... I just got on with it, and tried not to fret about what I couldn't manage. Taking as much control of *my own* life as I could, really, I suppose.

Far as I can make out, if there *is* a purpose to life, rather than just the breathe-breed-die scenario, it's to "grow" as a personality gain experiences (both good and bad) and learn from them.

And then share what you've learnt with others

They don't have to take my advice, nor accept my opinions, but if there's something I can say, or do, that nudges anyone else into the next step of their own personal growth ( a horrible phrase that!) then I'm doing something that I consider to be worthwhile


Here endeth the lesson!

I know what you mean about passing on about hereditary illnesses, btw. Problem was, with me, I was adopted, so I hadn't a clue as to my genetic history. Until after the event.

My adoptive parents were told, both "birth parents" were medically normal.

THEN, when I discovered my birth mother, I found she hadn't a bull's notion about her own familly's medical history (except for the diabetes...and hey.. guess what?).. PLUS she couldn't actually remember who my father was, let alone his name! (nor, naturally, any medical history)

I know, I know, it sounds like a sketch out of Python, but honest, this is true!

I have no wish to concern you, but my eldest lad was diagnosed with Perthes at age 9, and bless him, he's already cricking and cracking in his back - about the same age as when I started to creak

In truth, had I known that the constant aches and pains I had as a kid were actually not average, I would have thought far more carefully about becoming pregnant. It wasn't until my pain threshold got beyond toleration that I began hunting for a diagnosis. I assumed - wrongly, that everyone hurt as much as me.

Having said that... I have faith in my lad. Yes, he hurts. Yes, he knows how he *might* be (after all, he sees me every day, and, thank god, his rather broard shoulders tend to mop mother up when She Goes Into One)

BUT

Never once has he ever blamed me for passing this rotten pain onto another generation. Frankly, I don't think it has occured to him. He teases me about it, but then, he, too has a sick S-O-H


He bitches about the fact he has to wear specs (yep, OK, me again)

and the other lad moans about his crooked lower teeth (guilty m'lud)

but those are "cosmetic" problems. Contact lenses and a bit of orthodonistry respectively; inconvenient yes, but sorted

I appears I have also passed on my coping genes!

And they, in their turn have been passed on from somewhere, surely? To me, and from me.

As well as our physical detriments, it must logically follow that we pass on our inherant qualities. I've passed on intelligence,(both academic and, IMO, emotional), empathy, understanding and determination. I wasn't taught these - I've seemed to have always had them.

And no, they haven't got just these. From their da they inherited a strong (and healthy) self interest, guile and street wiseness, together with an emormous amount of creative abilty. And, I might add, superbe physiques, from an asthetic p-o-v, at least.

Put them all together, and despite the crook back, crook eyes and crook teeth, they're both, the pair of em, pure dynamite. They both know their medical histories, and all the pitfalls that *might* happen if and when they have children. We watch the youngest's sugar levels constantly, for example. He, like, me, is a borderline diabetic.

But I reckon, mix their genes with another's genes, and their children, despite their gran's duff genes will be pure dynamite, too.

Thats the theory, anyway

I like what Evade Cake said along with many others here and I can relate to all of it.

You are the same person with new challenges that mostly only you can feel and deal with.
It can bring out the best or worst if you let it.
If you were fairly balanced before you will likely regain your balance again. If you were not very balanced and want to change it is certainly the perfect time and opportunity.

Real coping is doing the best you can without blame or bitterness. Good for the healthy too! It is normal to go through a period of acceptance and anger. It is normal to have badly off days or short periods.

The basics of good health are not just a good idea but vital when you have chronic illness. Many have been mentioned. Basic diet , sleep patterns, exercise,weight, all the basics become more important.
The more you can keep on an even keel the less you will inflame , inflamation is what sets yourself up for more permanent damage.

Stress kills and inflames in many ways so it is better to get it out than stuff it in. Some people will need to learn how to do this. ASking for help was never something I did and I had to learn to do that. It was (is) painful for me. Some natural born divas may not find that a problem!


I fought perfectionism and worthiness to others, and many questions about faith in myself.I learned how to tackle these but will forever battle with them some what. (I would have never come to h2 with my old perfectionists bugs!)Aplogies for my mistakes.

I think any problem you have emotionally will get exaggerated because it is a state of different stressors. They are also stresors you did not ask for which brings a subtle difference to the position. It is sometimes easier, though not easy to know you asked for trouble.

I believe most could deal with the physical aspects if it did not oooze into other parts of your life in many cases. Like your extended family , children and friends and work-money, where you live , experiences and relationships....

The genetic factor comes in with me, adopted and I did not have a clue until it was too late. Once I knew of the family history I realized my biologcal father came home from the war crippled with pain and drank alot and deserrted us, eventually he drank himself to death. My sister and I now believe it was the pain. The pain in his body, the pain of not being able to work, and support 11 children. The pain of knowing he was gone 6 years and had 4 more kids did not help.

I worked with an orthapedic surgeon when I first in Radiology.
He was the old country type, could set bones like no one else.
He saved so many surgeries and I never saw a patient return with a bad re-alignment.

He gave them whisky every time. If they drank normally ,he gave them more. If they did not he assured them it was the fastest and least painful way, a "medicine" same as anesthesia.
He was amazing! The point being alcohol effectively helps with bone pain. I cannot drink or I would!

I would like to offer some hope for those younger generations. I am 50 and things have changed enough to where IF I knew to look out for genetic history I would have been diagnosed and the proper exercises and treatments could have been started when I was 20 or before. There is already advancements IF you are young.

The spinal form of AS is the most difficult to treat(have AS too)
People who have arthritis , all humans eventually get it in their backs but that is typically closer to the last decades. To have spinal arthritis as your primary site causes many complications much earlier in life.


I respect faith, but doubt is what gives you an education.
— Wilson Mizner

Two recent quotes I found
Good ones for me but may not be for others.

Perfectionism is not a quest for the best. It is a pursuit of the worst in ourselves, the part that tells us that nothing we do will ever be good enough.
— Julia Margaret Cameron

I had done battle with perfection before my pain took over.
BUT suddenly I fell back into it in wanting to be the * perfect ill person for others. That meant never complaining or asking for help or being a bother about it. Hah! Thankfully I got the message this was an old bad recording fairly early on.

I had to learn to accept a lower grade on some things and that all does not have to be perfect to be workable. I also could not procrastinate when I had far less energy! It is very important to keep as current as possible on the known schedules and emotional baggage.
No person is perfect so no situation is.

How to bury yourself with Perfectionism;
Step 1 - Seek perfection in yourself
Step 2 - Fear being imperfect or not good enough
Step 3 - A fearful paralysis takes over and you do nothing

I had to figure out how to deal with my chronic pain before anybody else can learn to deal with it. People will take your cues.


******************
I respect faith, but doubt is what gives you an education.
— Wilson Mizner
Other arthritis medications do not affect it like other joints.


The DeMyelin Nation has a few of us that can share situations and tips or just plain complaining. I do think you are better off having somebody to share the frustrations with. If it is within you it will use out eventually and at the worst time.. I prefer to get it out in a good place and in a timely manner when I feel it building.

Pedboy and I wrote a thingy for the others around you - how they can be helpful. I also wrote a piece on procrastination.

One of my sayings is Stop Should'in all over yourself!

Plan something nice weekly for yourself,
only for your spirit food
It is way too easy to give all your energy away.

I will definitely check back here
Might be a while though , this is a thesis for me
Oh yeah and praise yourself if nobody else will!
YAY! I did it!I posted a long one.

Oh my many mistakes! Even repeats.
Oh well.
I will correct one!

I do think you are better off having somebody to share the frustrations with. If it is within you it will
OOZE out (not *use)
eventually and at the worst time.. I prefer to get it out in a good place and in a timely manner when I feel it building.

This is a nice place to go,even if someone is just having a bad day.Much like abbis' DE myelin nation.To be able to get it out of my system by writing things down always makes me feel better.
I have never wanted NOT to wake up in the morning..my life might be painful,and i might be dependant on others more,but i love life,and the joy i get from my family and friends,and while things can make you feel good inside,the good things outweigh the bad bits
Just a brief outline of my problems though.I was in a road accident many years ago,and was pregnant at the time.I was badly bruised.minor cuts,but because of my condtion the doctors didn't want to x-ray more than neccessary.
When my baby was born,i went into delayed shock,and couldn't walk..my legs hurt,and kept refusing to move!!!
Iwas put on medication,valium to be exact,and was soon back to myself,but fund that i was veering toward the road,or a wall...not able to walk a straight line.
This was slow process,and i was better when pushing a pram,or with soething to hold on to,although i developed spondilosis at the top of my spine,and was told it was smething that hadn't been spotted when i had the accident.
Things got slowly worse,over many years,until i eventually was frightened of going out in case i fell,or walked into the road,my balance was a litle odd as well by then.I started having panic attacks when i was outside,couldn't get on a bus,and eventually i had to give up my job.I looked drunk alot of the time..and was still wearing a surgical collar .
Anyhow,to cut a long story short,here i am,some thirty years later,i have spondilitis,at the top pf my spine,sponilosis lower down,i have osteo-arthritis in my neck,elbows,ankles,knees,fingers,..and vertigo all the time,with bad attacks varying from every day to a few weeks apart.I suffer panic attacks,bouts of depression,anxiety,muscle spasm,...and have a wheelchair ,which i have no option but to use outside,as i can't walk unless two people support me,one on each side.I have an electric scooter,which i use in the garden,but don't have the confidence to go out alone in.
I never thought i would end up been in a wheelchair,and obviously there were no indications of that when i had my children.who now have creeky kness as well.
Today i am in pain,because a friend rang me last night,and i was on the phone too long!!!My muscles tightenedup,then went in to spasm,and today i think i missed the horse that ran through the room and trampled on me in the process!!!But tomorrow i should feel better,I am going shopping later,when hubby comes home from work,and we'l attach a trolley to the wheelchair,and shop just like anyone else does.
Life could be a lot worse..."there are others a lot worse than me",

Welcome to the club Smurfles and thanks for your story. I think this place could really develop well - anyone else wish to unburden themselves with like minded people?

There'll be others along, I reckon, soon enough - it's handy to have a place to have a rant and a giggle, too

Didn't I read somewhere that you go to work Doctor?

How'd you cope with the travelling..and the *doing* of whatever it is you do?

Yes, work at a large Airport just outside London (No advertising here!) and drive in to my desk job. Bit of a pain as years ago when I could move reasonably well, I was an Aircraft Engineer which was sooooo much fun. Can you imagine at the age of 19 being allowed to fire up a jet and take it up to takeoff power (with brakes on I hasten to add)

I miss it sorely and yet another reason to hate artheritis!

That perfectionism quote from Julia Margaret Cameron is one of the best I have met, anywhere.
Look at her photographs http://www.masters-of-photography.com/C/cameron/cameron.html

Equipment: antique (literally); technique, nothing special; acheviement: amazing.

A889194 The De Myelin Nation

Thanks for the photo info. Sounds interesting, I will search for it.
My browser opened a full page advertisement with that link.