Cycling UK Forum

Apologies, but seems relevant. @ 51yr's, am a lifelong keen cyclist, gym user.

A graduate, always had a considerable work ethic (How many 15-16yr olds cycle a 43 mile round journey to a weekend job ? Obviously cycled into University, pre graduate. Have spent yr's managing works in London & the SE, the SW, Yorks & Humberside & the N.E. Last position, 5yr's @ a Senior Officer grade, Local Gvt, , occasionally serving as a Poll Clerk & Presiding Officer on Elections, in my spare time? (05.00am to 23.00Hr's)

Had my life saved by Security Guards last week, walking me away from NHS staff last Wednesday, a bus driver who'll have driven past me on thousands of occasions, picked this unshaven man up, giving me a 17 mile lift home, FOC, last Sunday. Helped again by locals, who know me, feeding me, putting me up for the night. Agreeing to give me a lift. Whilst those NHS *^%$^&* have tried to imprison me

I accept I experience absolute brain seizures, at a typical 34-37 day period. But have had attempts to kill me, by those &^%$%^& NHS [rude word removed] in the past three years. Is it time to merely head off cycling abroad? I'd prefer to cycle for several months and die, rather than been cared for by state monopoly, medical staff

gbnz wrote: ↑13 Jan 2024, 8:21pm Apologies, but seems relevant. @ 51yr's, am a lifelong keen cyclist, gym user.

A graduate, always had a considerable work ethic (How many 15-16yr olds cycle a 43 mile round journey to a weekend job ? Obviously cycled into University, pre graduate. Have spent yr's managing works in London & the SE, the SW, Yorks & Humberside & the N.E. Last position, 5yr's @ a Senior Officer grade, Local Gvt, , occasionally serving as a Poll Clerk & Presiding Officer on Elections, in my spare time? (05.00am to 23.00Hr's)

Had my life saved by Security Guards last week, walking me away from NHS staff last Wednesday, a bus driver who'll have driven past me on thousands of occasions, picked this unshaven man up, giving me a 17 mile lift home, FOC, last Sunday. Helped again by locals, who know me, feeding me, putting me up for the night. Agreeing to give me a lift. Whilst those NHS *^%$^&* have tried to imprison me

I accept I experience absolute brain seizures, at a typical 34-37 day period. But have had attempts to kill me, by those &^%$%^& NHS [rude word removed] in the past three years. Is it time to merely head off cycling abroad? I'd prefer to cycle for several months and die, rather than been cared for by state monopoly, medical staff

Nearly 120 views and no responses, I think that a bit unusual but sometimes folk are stumped as to what to usefully say; indeed I’m not sure that my comment will be useful but it will put the thread up the list - pity to see a cry for help buried.

The OP’s experience with ordinary people gives me some hope for humanity, it’s mixed but there are some decent people out there. His experience with the NHS doesn’t surprise me, the people he’s seeing don’t know what to do with him and the NHS is riddled with folk who have passed exams but in practise aren’t as competent as they should be - or believe themselves to be. Well that’s my observation over the years and (socially) I’ve overlapped with many patients and many medical staff. As a further observation poor outcomes from rural hospitals seem more likely than those from the major centres, well so for anything complicated or rare. I suspect that the OP is ‘seem’ by such rural hospitals.

Sometimes people involuntarily injury themselves and that can be in various ways, and sometimes I’m inclined to think that they are subject to undetected injurious acts by others - of which I suspect that there’s a wide spectrum. Over the years I’ve got to know of quite a few people who have debilitating sickness, stuff that’s either put them on the permanent sick or restricted their life … just an observation. Many of them, the bulk even, haven’t been well served by those in the UK medical profession who don’t have the skills required to sort them out.

What can the OP do? I’m reallly not sure that I know but maybe start from the perspective of his systems being damaged (see anbove) and see how he can change various things? Also consider that one of the definitions of madness is repeating exactly the same action and expecting a different result - though sometimes, by seemingly random event, you do get a marginal change that significantly changes the outcome. Those looking for recovery have periods of convalescence and rather than intense activity I’d suggest (as a non-medic) much less intensity and more rest - what he does would knock me out. Give all parts of the body more chance to heal. I wonder where the centres of excellence for the OP’s condition(s) are and then whether he could seek referral there? There’s no guarantee of improved care but it loads the dice in his favour.

Time wise the whole thing would depress me but the longer he stays alive and keeps seeing some care then the more chance there is of some recovery; try to load the odds in your favour, review what’s happening, and keep rolling the dice until you get a six.

I hope that at least some of the above helps.

Carlton Green’s measured response says it all. The OP has major issues and the people and systems they should trust are failing them hence the anger. As Carlton says, we are stumped for adequate responses as we don’t have the diagnosis and suggestions regarding our ideas of a potential diagnosis would be intrusive and quite frankly dangerous. Even thinking of comparing the OP’s situation and symptoms with those of others we know, would be wrong as we’re not medically trained nor working in the areas of psychiatry which are needed. Yes the NHS is foundering under weight of social and economic pressures but what else can the OP do but return to them for help. At least there is a degree of locally initiated care in their community. Good luck, try to stay positive.

What a horrible experience for you!
If you have these episodes on a regular basis, I would seek help when you are not in crisis. Have you approached Mind, the mental health charity?
As for cycling: well, it’s definitely good for my mental health, but I’m not sure I would want to travel abroad with any sort of unresolved health problem. Negotiating unfamiliar systems in an unfamiliar language can be very challenging.
Best of luck getting over this and back to happier times.

aflook wrote: ↑14 Jan 2024, 7:03am What a horrible experience for you!
If you have these episodes on a regular basis, I would seek help when you are not in crisis. Have you approached Mind, the mental health charity?
As for cycling: well, it’s definitely good for my mental health, but I’m not sure I would want to travel abroad with any sort of unresolved health problem. Negotiating unfamiliar systems in an unfamiliar language can be very challenging.
Best of luck getting over this and back to happier times.

Thanks to the above, apologies for posting a non-cycling issue, it isn't a "mental health" type issue. Having had the head cracked in two twenty years ago, it's simply a case of being at risk of a physical seizure at a fairly precise 34-36 day interval. Being of a fairly pedantic & perfectly happy disposition, I've long since learnt to stay off the bicycle amongst other activities, during a probable seizure period, having kept in depth records of when such are probable. Would presume timing will change with age.

Had to sneak a phone and the police in to free me from the above hospital 2.5 years ago, using my experience to arrange a state funded Barrister and backup Solicitors to thrash the NHS in court. Had a glowing review from the court, following a 4.5 Hr court hearing.

But in relation to cycling? Having yet again had a a barrage of false accusations made against myself by a certain part of the NHS, in an attempt to solve their problem by locking me away (Nb. The issue is effectively that of an emergency hospital, find myself dumped on them whenever I've blacked out on the street or wherever, causing an almighty nuisance in terms of their time wasted. Might help if the "specialists" had spoken to me in the five years they've dealt with my having seizures, more often than every 24-26 months). But am fairly sick of facing a false barrage of accusations, in an attempt to enable the &^^&*^% to lock me away, to save their time.

Suppose initiating legal action against that part of the NHS, may be an option. Strange what the courts thought of that Dr who'd imprisoned me 2.5 yr's ago on behalf of a certain hospital, when it became apparent he'd never met me, never spoken to me, was actually abroad in the 4-5 weeks he was "treating" me, being a largely retired individual.

Can't hep feeling that perhaps several months cycling away would be preferable, with perhaps a relocation out of the area on my return. Would be a shame to loose local contacts, given I'm well known, but quite notable that I've never faced a barrage of false accusations, following an occasional seizure and hospitalisation in any other part of the country. But was pleasant to again be helped out by locals

I've no advice to offer, but very best wishes for finding a positive way forward.

Phew, like others here I cannot comment on the medical aspects. Would cycling on a trike or recumbent be safer for you and maybe reassure those who are concerned about your seizures?

I'd echo the caution about cycling outside the UK. You would need some kind of medical travel insurance and that might be difficult to get given your history. Although lots of people in Europe speak some English, not everyone does, and in many cases the local language is essential to deal with complex difficulties.

OP's situation outside my experience so whilst I cannot offer specific suggestions, one possibility is finding a specialised support group. In my experience there are loads of small quite specialist support groups. Some not even charities, not accepting money but run by a sufferer who recognises that non-medical help can be a big help and talking to others facing similar'ish challenges can be a great help.

Lots out there and difficult to find in part because they might be a bit broader than the specific issues facing an individual. For me the main strength is in finding others facing similar'ish challenges and talking to them. They wont offer medical advice (avoid any that do). But communicating with others facing massive challenges and finding how they get through (and them finding how you get through) can be a great mental help.

Just a thought.

Ian

+1.Stroke survivor,no car now,most of my brain intact,some short term memory problems,no physical problems.Age 71.If my wife goes before me and I,m still fit enough,I,ll go "walkabout",long or short.Do it I say.

cyclop wrote: ↑15 Jan 2024, 11:18am +1.Stroke survivor,no car now,most of my brain intact,some short term memory problems,no physical problems.Age 71.If my wife goes before me and I,m still fit enough,I,ll go "walkabout",long or short.Do it I say.

Thanks, a final look at ctc forum, after five hours reviewing issues online ! Have the ability and means, time to move on (Nb. Only experience miniscule seizures at a fairly precise 34-36 day interval - never had an issue staying off the bike for those few days)

Strange that a lengthy cycle tour does appeal, may combine it with a relocation out of the region (Nb. Can understand why Emergency Hospital staff are hacked off, but doesn't justify my illegal imprisonment, on invented, medical grounds, to make life easier for those &%*).

Two house moves ago,in 2010,we sold up with no house to move to,just our wee touring caravan.What a feeling! Freedom,simplicity,no ties.A freezing spell and my wifes ongoing health issues did mean we did need to find a place......nice while it lasted though.Settled in beatiful Dumfries and Galloway.Having moved a fair bit,we have no fears about moving again if ne ecessary.Good luck to you and your house move ,new horizons,exciting.