To be frustrated at people being pissed off at me

[Emmielu]

For not being able to drive? I either get the 'ooh that's a real shame. It would make things so much easier for you & make you more independent & less relying on others' or the 'well there's gotta be something you can do instead of using excuses.'

There's a reason I can't drive & I hate telling people why. I have epilepsy. Yes I take meds for it. No they don't always work. No I don't know when I'm having a fit. Yes I go all out with the shaking, biting tounge sometimes vomit. It's far too expensive for me to drive. Insurance will be awful. I have to go a year on meds without a fit.

My god I'd love to be healthy & normal & drive & I do hate asking for lifts. I even hate it when people offer but what else can I do? Turn down the offers, opt for public transport if any is there. I just feel like I'm a lost low life & that without driving I have nothing to offer for life.

I know exactly how you feel op, but I refuse to feel ashamed. And internally I judge the hell out of condescending people who come out with the old "there's not excuse..." line, they should consider how lucky they are that they are financially and physically able to drive, not casting aspirations upon those that don't. I don't think I should have to explain why I cannot drive so I don't. But like you I am very very loathe to accept lifts.

Disabled persons railcard can get you a 1/3 off railfares and a 1/3 off for a person travelling with you if you need an assistant. More here. But you do not have to be travelling with a carer/PA to qualify for the discount.

Access to work is a broad scheme to help disabled people into work and you can get grants which among other things can be used to cover the cost of taxis if your job is not accessible by public transport. More here. You need to access it through the Job Centre and I have not used it personally but I've met people who have and found it great. They will calculate the cost of driving to your place of work and then calculate the cost of a taxi and give you a grant to cover the difference in cost so you are not out of pocket.

At the moment I can't drive because the dvla have suspended my licence on medical grounds (diabetes not epilepsy and on the basis of a question that they're changing due to misapplying EU regs so really really unfair). Saying which I'm in my 30s and only passed when I was 29. I lived quite well without driving and find it such a pain now because I've come to depend on it. It's an even bigger pain because I have twins and can't use minicabs easily because I can't manage a buggy and 2 car seats (we have separate ones) whereas when I drive I just leave the car seats in the car.

There are alternatives - buses, minicabs. Driving is an expensive business, every time you get in the car you're a cash cow and it's quite a stressful experience too. My father has never driven because he's never wanted to he prefers to be chauffered .

I think if you're always asking for lifts then people do resent it after a while as while it may be your choice not to drive (whether imposed or of free will) you do have alternatives in getting around. Your first comment seems to suggest they feel that you are putting pressure on them to always give lifts. I happily give lifts to people going to the same place as me but I'm just as happy to receive a lift as I do find it tiring particularly at night.

I understand not wanting to tell people your medical history (I generally don't) but telling them it's too expensive for you is unlikely to go down well. Also are you married? If so you may find that insurance is not so expensive as you're not the named driver. Dh insured me the afternoon I passed for the princely sum of £56 as our 2nd driver. That's with a medical declaration of 26 years of type 1 diabetes. Either way I understand the fear that something might happen while you're driving.

Good luck with whatever you decide to do.

I would have thought it was just easier to explain, but you don't have to. I might be annoyed if someone regularly relied on me for a lift and said they wouldn't get a car on cost grounds, as I'd feel that I was footing the bill. My DH knows lots of non-drivers who purport to object to cars and driving on principle, but are quick to accept a lift when it suits them. I'd be more inclined to go out of my way for someone if they couldn't drive, rather than wouldn't.

Yanbu, I drive and sometimes it does get annoying people asking for lifts, but it don't take long to drop people off home and I know they are home safe.

zillion I have mortally offended people before by offering petrol money - accepting lifts is a mine field - but I know exactly where you are coming from with the people who say its a principle but then ask for lifts.

I think about once maybe twice a month I'll get in the car with my husband (excluding annual holiday), as I have no need to, I am more than adaquately able to get around under my own steam. Therefore it drives him batshit that one of his work colleagues expects him to pick him up from the station to "save him the bus fare / taxi". This chap chooses not to drive in for cost reasons and it is a 12-15 minute walk to the office from the bus station

Thankyou very much!

I already have a student one to get me 1/3 off, it makes quite a big difference, in my head anyway! It runs out soon, so i will get one of those!

I've actually just finished my internship which was a bastard to get to on the bus, can't believe ive found this now! Aahh, well its their for future reference!

Penelope - I didn't know you could get help with taxi fares for work. I thought the same with railcards you had to be with a carer. I'll look into both of them! Thanks!

Hi Emmielu

Yes, I'm in the same boat. Do you have one of the Concessionary travel passes?www.direct.gov.uk/en/travelandtransport/publictransport/busandcoachtravel/dg_10036264. They only work off peak so it's good to get the disabled railcard as well but you are entitled to both. The travel passes give you free bus travel off peak, means if I get the bus I buy a single in the morning which is slightly cheaper. The bus pass may also give you a discount on trains or trams but this varies by area so best to check. I believe if you live in Manchester you can travel on the trams with it but it's only for residents so you may have to specially apply. The nice thing about the disabled rail card is you can still use during peak time!

It is frustrating - I am very lucky in that my epilepsy is now mostly controlled by medication apart from the odd myoclonic jerk (still enough to ban me from driving). But when I was your age I had just been diagnosed while at uni, couldn't have the same lifestyle any more and a lot of my friends found my seizures scary and abandoned me. I got rather depressed.

The good things have been finding lots of stuff to do other than going out late/drinking etc - so I have tons of hobbies and daytime activities and I think it makes me an interesting person to talk to. Also I am a believer in public transport (from an environmentally friendly point of view) and I can pretend to myself that I'm making a difference by not being a car driver adding to the pollution. Instead I'm putting money into public transport (and support through appropriate campaigns). Which would make a better world for everyone.

One last thing. When I was a student, some ten years ago now, none of us had cars. Maybe my friends and me were poorer than your crowd, but when I see students with cars I am totally baffled by it. I live in a city though so there is no reason for having a car. What someone said above about taxis very true - one off journeys are a lot cheaper than car ownership. And proper long journeys are faster by train!

I am not sure why that link did not work: www.direct.gov.uk/en/travelandtransport/publictransport/busandcoachtravel/dg_10036264 ?

your reason is 1000000% valid!

YANBU to feel unhappy about this. But I admit I am one of those people who would be encouraging you to learn to drive. For a number of reasons I didn't learn until late in life and it has genuinely made things easier. So I would try and encourage you thinking I am being supportive.

Maybe just tell people you have epilepsy? I have a hidden disability and do tell people when relevant. I don't think it is anything to be ashamed and embarassed about.

MsSilk Thats awful about your uni friends! I was diagnosed at 14/15 and i have the same lifestyle as everyone else whilst i was at uni. Funnily enough, ive not drank for ages and recently i had two fits in 1 weekend!

Not wishing to hi-jack the thread, but in response to Kate and Penelope, there is still a prevailing undercurrent in some elements of society that epilepsey is somehow shameful.
I am occasionally shocked by the attitudes of some HCPs towards the condition.
Two spring immediately to mind, I saw a patient being taken to theatre will a red allergy band on, I knew he had no allergies so was intrigued. On checking I saw it said 'Epilepsy' I was shocked and spoke to the staff nurse (after cutting it off) and asked why she had done it and if she would do so for any other condition. I confess I did then ask if she would like to put on on me.
On another occasion a staff nurse asked if Mr Bloggs should be in a side room as he was a (well-controlled) epileptic. Again I asked if I was Ok to go in a side room then.
Such remarks from qualified staff are shocking, as a patient, after suffering a Grand mal seizure I awoke to find a Dr asking what had I been up to as if I was a naughty school girl, no one told me I'd fitted as if it was something to to hidden, I had to ask the HCAs why I had moved rooms.
I appreciate that nobody is under any individual responsibility to evangelize about epilepsey and by the time I had posted slowly last night (am not well ATM) the OP had posted further and I felt my contribution was no longer correct in tone, for that I apolologise but as you know, x-posts are easliy done.
A simple "I'm unable to drive on medical grounds" should suffice, I've been banned twice as I said, and nobody ever questioned that explanation further.

Hi Sauvignon I completely agree with you that attitudes to epilepsy still suck which is crazy given that we have known what causes seizures and even had some idea of how to treat it for well over 100 years now. I think it is a combination of epilepsy being really quite strange and therefore frightening for people witnessing seizures, and a tiny and very irritating minority of people actively choosing to be ignorant.

I suspect we agree on more than that too, and that basically we both think educating people is great if and when you feel up to it, but not necessary or worthwhile when you don't!

Sauvignon I have experienced bad attitudes towards epilepsy once or twice but only by paramedics. I mentioned before that if ive had a straight falward seizure i dont like to go to hospital, but once or twice i have had paramedics asking me which drugs ive taken, when i say no ive got epilepsy the come back has been in the past 'oh we've heard that one before what've you really been taking?' thats happened to me more than once, and they've asked a friend all sorts of tough epileptic questions that even i myself dont know, i feel sometimes to be difficult because clearly ive been taking drugs? Other medical professionals are usually fine, and i dont really count what the paramedics have said to me.

I dont think ive ever had a bad reaction to my epilepsy from a friend/stranger they've said they have been scared when i've had a fit. I think its the medic's that need educating, and the people who ask why i am in a nightclub if i have epilepsy.

So what triggers everyone's epilepsy then? I find this interesting as some doctors say It's drinking, but like i dont think its got anything to do with mine, i do think tiredness/stress but i just dont know anymore.

Has anyone got photo sensitive epilepsy? Mines not, i can handle strobe lights fine, but camera flashes hurt my head, ive never had a fit though caused by them.

With me mostly lack of sleep but the fit would come in the morning when still half-awake. But it would often happen with no obvious trigger before I got on the right meds for me. Alcohol and illness as well.

I hope you don't mind me asking what to do if I see someone having a fit. Many years ago I was told to make sure the patient couldn't hurt themself and to call an ambulance if they were sleepy and confused afterwards. Is this still the case?

I have given up looking for triggers. I'm sure I'm more vulnerable when tired and run-down and menstruation is a big one, but specific things like flashing lights aren't an issue for me or most people. On the whole I find medical attitudes are fine but my seizures don't really attract medical attention because they are so brief, I just have to keep explaining to people that whilst I do have epilepsy this doesn't mean I'm going to collapse and jerk as they expect! The more upsetting attitudes are from family and friends who only see the tip of the iceberg and don't really appreciate how draining either daily seizures are or the side-effects of meds are. Or they are simply embarassed and won't talk about it, or assume it is some form of panic attack. My MIL has never used the word epilepsy and always lowers her voices to refer to 'Penelope's funny turns' which gets a bit wearying after a while.

As for what to do. If you see someone having a tonic-clonic seizure (collapse on the ground, completely unconscious, arms and legs start to jerk) check they are safe and check your watch. Only physically intervene to get them out of danger. If they are still convulsing after 5 mins call an ambulance, almost all seizures stop within 2mins. Once they stop convulsing give them some time and space to recover and ask how they are. Some people can feel agitated and confused at this point (don't be surprised or offended if you get sworn at - the adrenalin rush after a seizure can make people aggressive, they will probably feel really shit about this once they have calmed down). If it is their first seizure or they are injured then definitely call an ambulance. Otherwise they are probably fine but may appreciate being helped to find somewhere comfortable and sheltered and the offer of a phone call to a friend or family member is always good.

In a partial seizure people are unresponsive to varying degrees but do not generally collapse. Basically the advice is the same but you are even less likely to need to call an ambulance. I've had dozens of people ask me if I'm OK which is always appreciated but since after 30s or so I'm generally well enough to walk away I've never needed any help.

Thanks Penelope. I will try and remember your advice.

Thanks Penelope. I didn't know the 5 minute rule. I knew you don't have to call an ambulance for a seizure (unless they injure themselves in the process) but I never knew how long seizures usually last, or about the adrenalin rush. Good to know.

Please, please, be open about having epilepsy. People need to know about it and meet 'normal' people with epilepsy who are just living their lives in a normal way (albeit with the odd seizure)! Otherwise how will people like my beautiful intelligent loving 6 year old cope with having this condition when they go out into the world.

One in a hundred people have epilepsy - there are loads walking the streets every day. My DS has just started saying that he is 'embarrassed' about having epilepsy. Well I am not and I am not quiet about it. My son has epilepsy but it is only a tiny part of who he is. He is great and I love him. Epilepsy is never, never something to be ashamed or quiet about.

It sounds less like anyone is remotely pissed off with you and more like you have a large chip on your shoulder about it.

so people say its a shame you can't drive? It is, isn't it, since you'd like to? So what on earth is the problem there?

No reason to be embarrassed or ashamed of a medical condition. If people think you're choosing not to drive because you'd prefer to be chauffered around, then it's fair enough that might irritate them, but if they knew there was a medical condition and you offered petrol money (for long journeys) or the odd thank you present (for regular, short journeys) I'd hope people would be happy to help you out with transport if they can. If not, it says more about them than about you