Life Changing News

[jeebowhite]

So, I know lenny had similar news a few months ago and now it's my turn... So, your getting on day by day, everything around you feels normal, and something isn't quite right, but it's normal to you, then one day the news is broken of how life can be very different going forward.

Yep, that's me.

So I'm going through all the hoops and tests, and whilst the answer is not written in stone, it looks like at the ripe old age of 25 I'm probably due to be labelled once again. Multiple sclerosis. Not a text book condition, there's no single thing that makes it, just your nerves are a bit shot to pieces. I have had several assessments and each time they tell me it's looking likely.

So I have already gone half blind, lost a kidney, had blood clots and also now seemingly losing this new fight. Sadly though it seems the fight started about 13 years ago and got to this stage today.

Now, this isn't a pity story or a cry, nor is it a woe is me. It's a heads up. It's a reminder to do what you should do and don't. I'm urging you all to waste your GP's time (within reason).

If you get odd events in close proximity, one offs or recurring but just 'one of those things for me' go To your GP and tell them, if it doesn't feel like it's right tell them. If it outright shouldn't have happened once, tell them.

For me, my memory was always crap. I could walk the 20 feet to the kitchen and forget what the wife wanted me to get. Now and then I could lose balance without reason, but I thought maybe I just stood up wrong, or just kind of lost my bearings. I was tired, cos I work from half 7 rill 7 (journey times included) and don't sleep well. I got the odd twitchy muscle here and there and I thought it was just odd, but maybe I had done something daft. Even as simple things like I could say the wrong word or always have that word on the tip of my tongue but never spit it out.

Altogether they are normal for me, but never would I have put them together. And even then, I never would have thought anything else, until such a time as it goes a bit Pete tong...

I urge you all to do one thing now, sit down for a couple of minutes and write down things that just periodically happen to you, those odd things that you don't know why but it's just tour quirk.... And i would contemplate taking them to your GP if any of them have happened in the last few weeks especially if you have had more than one.

And for those of you who are not great at handling bad news, I have something to help you. You have, or very shortly will have cancer. That's it. This is how I can get through rubbish health and horrible news like this without breaking down. I tell myself the worst thing, I will probably get cancer one day. I don't know it's true but I brace for it, it's like knowing your going to die one day. It's going to happen, so everyday you wake up I'd that bonus, and when you get a cold or break a leg, you go nuts for a whole but your still alive. It's this which is helping me get by without breaking down and if it genuinely helps any of you, then I'm fulfilling something.

So out of curiosity, do any of you have MS? Or any other issues like that you want to share? If you don't want it out loud and do have MS I would be interested to talk to you, I want to understand what this thing is about and how it affects people, cos I'm not going to let this thing beat me like losing my eye and kidney did. So drop me a PM, and if you do as I asked above, make notes and want to ask if your being daft etc drop me a message.

Oh and for the record, I harassed my doctor, many times a week when I lost my kidney and eye, he wasn't a very good GP, he was a bit of an 'I shall see you next Tuesday then doctor' if you catch my drift. And whilst he constantly brushed it off, I went back until I persuaded him to refer me and each time I was right.

Remember your GP only knows what you tell them, not what's different, or just a quick you know of but they don't.

Anyway I'm off, I have a hospital bed to sit in and twiddle my thumbs in :-D

[Philf1]

Wow that's certainly some s**t that's happened there mate. I only have one kidney as we'll lost mine in 1982 with a tumor but luckily have been pretty much ok since oh apart from gout which I get in major joints and hurts like hell.

One of my neighbours was diagnosed with ms a few years back but she still gets about ok and drives every day. I think it's effects can vary a lot but hopefully your in the best place to get sorted.

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[Stoney871]

Jeez, not the best health conditions to have.

A positive outlook is important.

I broke my back at 24 and although I fought through it I do find that at 44 now all my joints are ruined by wear'n'tear.

My wife was diagnosed with cancer 2 months after we met and as a result we can't have kids.

Both parents been through cancer as well (Mother's more serious) but still keep a good outlook on life and can have a laugh at life in general.

A sense of humour is essential.

[SeanW]

A chap my Dad went to school with has MS. He found that the alternative therapies helped him greatly. His personal favourite was reflexology - he found it relaxing if nothing else. Not sure how he's doing, haven't seen him for a fair few years (he's still around somewhere - Mum works with his ex-wife...small world lol)

As Stoney said, got to keep a sense of humour about you!! The result when you lose that is not good.

I went through my most of my teens with the knowledge that one strike to the abdomen or getting rat-bottomed even once could have killed me. That was glandular fever - suffered with that for about 7 years all in all. Still have some problems related to it, particularly with the joints - knees and back (and yet I've gone for a career that's almost guaranteed to destroy knees and back...so much so there is a clinic dedicated to sailors knees. Steel decks, constant vibration and tumultuous seas are to blame). I also have a crap memory - but I think that's hereditary anyway...those old people who raised me - ahh, what are they called? Chaz & Dave? Noo...Fred & Wilma? Nah...The Two Ronnies? Nope - Ohhh - Mum & Dad - both have crap memories). I also have poor balance - never had fantastic balance as a kid, but since the glandular fever I have had the occasional problem. Nor can I stand still for very long

My biggest demon recently has been depression (I've discovered an almost perverse pleasure in watching people squirm when they ask me why I've not been at work) - triggered by Larium I suspect, but it has resulted in my being off for 6 months!! Still suffering with slight mood swings, but at least my happy days are outnumbering the bad (I ever got to the point of contemplating self harm or suicide - I was seriously considering becoming a hermit and living in the shed though).

[jeebowhite]

Hi guys your both right outlook is essential. Much like Sean here after I went half blind and kidney failure by 20 I didn't cope, had no means and suffered one hell of a depression. I remember a particular event where I was stood on a flat roof on our property preparing to jump....

Nowadays, I have a somewhat more positive look, acknowledging I probably won't make it to 30 may not be the strongest part but it is none the less amusing when I'm talking to my grandad who's like an ox at 90,or when my mates offer to take me to the field with a shotgun cos it's time lol.

Either way sens of humour is critical. But as I day I just hope a that if there is any one person reading this sends this info th

I the doctors then gets something out of it...

Sean have you considered going back to the gp as much like me you have a few thee that seem to recur

[jeebowhite]

I missed your message Phil, phoned being special lol.

Yeah kidneys no fun, however on the plus side St my stag do even with one kidney, I still managed to keep up and even drink one guy under the table :-D it doesn't really affect me yet, but there's time... As good the ms, yeah as long as it doesn't risk my license I will e happy, but, I must admit with the sporadic loss of my leg in Monday night it has me worried.

[SeanW]

I know what's caused mine - I was warned as a kid that I could have these problems for life. My liver was quite badly affected which is directly linked to joint health (if you have a very high LF it can dry your joints out). I tried things like cod liver oil (bleugh and useless for me). Poor balance is due to my legs just not working at times (see above lol)

If the frequency of it ever increases without plausible reason (like being ill, say with [man] flu or even struggling to find sea/land legs lol)

And to be fair, my memory has improved somewhat since I started seejng a counsellor - so that was stress related. I'm now at the point where I just want to get back to work, get qualified and then re-assess my career options (hate being away for 4-months stuck in a giant baked-bean tin lol)

[jeebowhite]

That's good news, I'm just now going to be pushing all my friends to say if it's happened report it.

On a lighter side, I recycled today. Having had blood tests making my arms look like pin cushions, meds etc I was left with a tornequet, medicine pot and a small square of paper and I made my own it'll flower lol

[Ianb]

Wow James, I never realised how much you've been through the wars already! You sounded like you're saying you've not really fought the kidney and blindness thing or you lost that fight.. Of course I am not blind and I believe I have 2 kidneys but I beg to differ that you lost that fight, the fact you're still here today, still driving and even after it happened at 20 yrs old (which lets face it, we're all still kids at 20 in most respects!) is testament enough that you have fought against it!

As for MS, I can't say I understand as I don't, however there is a lovey lady who we get our eggs from who told us she has MS - firstly, couldn't tell at all, she is normal in appearance, normal in attitude etc, lovely lady, her exact words to us (when talking about being semi attacked by a goose on her farm I think) were "I've got MS so I don't move so fast"... Other than that she has told me she's been decorating recently etc, at a guess I'd say she's maybe mid 30's maybe in her 40's.

On the cancer front, my dad was diagnosed with prostate cancer a few years back.. He had an operation and is fine now.. I think 4-5 days after his op, my sister lost her unborn baby, she carried the little girl for the full term, she told my folks not to come see her as she knew dad was recovering (she was about 2 hours drive away) they still went.. I think it was one of those things where both of them were in a 'condition' so they felt sorry for the other one!! dad said he felt like he came last in a crotch kicking competition!

Another cancer front, my dads best friend got diagnosed with leaukimia (I can't spell it) in February, he was told he had 2 weeks to live... He (very sadly) died last week... Maybe he got lucky or maybe he got determined. Either way the poor bloke was in the wars already - wife was completely doollaly from Alzheimer's and he had Parkinson's!

Anyway, not sure where I'm going with all the above, maybe they're just examples of how people can fight and go through different scenarios. I think love and support helps people through.. I suppose I've been pretty fortunate in my life illness wise, well aware life, baby things don't count I guess.. Although, I do/did have an extremely embarrassing problem which was not life threatening but certainly a bit changing... And that was perhaps (not diagnosed) IBS... In other words I had on a few occasions come extremely close to having a few accidents... Fortunately I never did, however the stress and embarrassment of having to tell someone to either pull over on the side of the road or find a service station quick literally 10 mins after you've just spent 30 minutes sat on a toilet is NOT fun!!! "What do you mean you need the toilet? You've just been"

On the plus side, I'm pretty knowledgable as to the whereabouts of public toilets in most areas I have lived/stayed! And I could find a public toilet in 200 metre area quicker than Jed could locate a stash of guns!

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[jeebowhite]

Thanks mate,

Well with regards the fights I lost the right eye, so I lost that fight and one kidney to, but I think the biggest fight to lose was the depression. All the meds they had me on conflicted and actually brought on a medical depression (chemical balances) but it's a hard hole to climb out of.

As for the cancer, I'm sorry to hear about your families struggles to and the loss of your dad's friend, the fight is what it takes. You have e to fight, you have e to push, and you have to want to get through. I struggle I won't deny, but sometimes when your facing certain peril you do what most stingey car owners do (me included) I have a range of 150 and a journey of 200 miles.... Now let's see how far I can take it. The way I look at it now is that If I breakdown, I just have a long walk for fuel, then the fun of bleeding, but I will get it there, and when you make the other side you stick two fingers up at your dashboard and if you make it there without braking down even better.

That is the attitude you need and I have learned that from far too many personal experiences. I thankfully had a lot happen young, so for me, I can grow into my mid life crisis, down half my eyesight and kidney power, with whatever other conditions now, if I train my body right I can get through my mid life crisis with the same drinking power as friends the same strength as a mouse, and the determination of a blindside donkey with a carrot in its sight.

As for your situation with Ibs on a plus side, it shows you only need a minor adjustment such as knowing the local points of interest and you can get on without anyone knowing.

I couldn't live with ibs, I need to go for journeys gun hp, stopping every few miles would drive me nuts and then reading a motorway that says no services for 40 odd miles would almost strike fear on my chest...

[Phil 87]

Sorry to hear this James, but it's good that you have a positive outlook on it, I'm sure that will make a big difference.

My uncle has MS, or at least I think it's MS. I don't see him often but he seems to get worse each time. I was going to go into detail but that's probably not going to help you reading it. He too is trying to stay positive about it, and it hasn't changed his personality which is obviously a good thing.

It makes it worse that you're so young, and it makes me feel lucky that I'm more or less healthy at 27. I could do with a more healthy lifestyle though, maybe a new years resolution is in order.

[jeebowhite]

Haha, I will take real life stories over BS and deluded positivity for 500 so do share!

As for the healthy, pfffft , fancy swapping bodies? I wouldn't mind vacation...

[Micro]

Just cos you think you've lost some fights doesn't mean you will lose the ones in future! Chin up mate, appears to me you're winning so far! I'm 24 and to imagine what you're going through I'd say you're made of stronger stuff!

I really hate going to the GP, recently only been to have tests to rule out IBD/Coeliac disease (IBS is interesting when you're at work >10 hours a day and no guarantee of bathroom facilities!!). Some days good, some bad, medication only works so far!

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[jeebowhite]

You made the right call mate in seeing your gp, I have spoke to people who just refuse and they ended up in a and e when the smelly brown hit the fan so I'm an advocate of using doctors more.

For now I'm still battling on the win and need to keep it up. The day I give up is the day I'm planted as flower food or cooked, although if I lose my faculties a bit before then I might plant or cook myself sooner lol. Having spent enough time here with people who are shouting for nurses to come do everything from lights off to bed pan... I would rather plant myself as living flower food than have to have someone run around with my dinner from a day or more in one of those bowls.

[GerrardLFC]

So, I know lenny had similar news a few months ago and now it's my turn... So, your getting on day by day, everything around you feels normal, and something isn't quite right, but it's normal to you, then one day the news is broken of how life can be very different going forward.

Yep, that's me.

So I'm going through all the hoops and tests, and whilst the answer is not written in stone, it looks like at the ripe old age of 25 I'm probably due to be labelled once again. Multiple sclerosis. Not a text book condition, there's no single thing that makes it, just your nerves are a bit shot to pieces. I have had several assessments and each time they tell me it's looking likely.

So I have already gone half blind, lost a kidney, had blood clots and also now seemingly losing this new fight. Sadly though it seems the fight started about 13 years ago and got to this stage today.

Now, this isn't a pity story or a cry, nor is it a woe is me. It's a heads up. It's a reminder to do what you should do and don't. I'm urging you all to waste your GP's time (within reason).

If you get odd events in close proximity, one offs or recurring but just 'one of those things for me' go To your GP and tell them, if it doesn't feel like it's right tell them. If it outright shouldn't have happened once, tell them.

For me, my memory was always crap. I could walk the 20 feet to the kitchen and forget what the wife wanted me to get. Now and then I could lose balance without reason, but I thought maybe I just stood up wrong, or just kind of lost my bearings. I was tired, cos I work from half 7 rill 7 (journey times included) and don't sleep well. I got the odd twitchy muscle here and there and I thought it was just odd, but maybe I had done something daft. Even as simple things like I could say the wrong word or always have that word on the tip of my tongue but never spit it out.

Altogether they are normal for me, but never would I have put them together. And even then, I never would have thought anything else, until such a time as it goes a bit Pete tong...

I urge you all to do one thing now, sit down for a couple of minutes and write down things that just periodically happen to you, those odd things that you don't know why but it's just tour quirk.... And i would contemplate taking them to your GP if any of them have happened in the last few weeks especially if you have had more than one.

And for those of you who are not great at handling bad news, I have something to help you. You have, or very shortly will have cancer. That's it. This is how I can get through rubbish health and horrible news like this without breaking down. I tell myself the worst thing, I will probably get cancer one day. I don't know it's true but I brace for it, it's like knowing your going to die one day. It's going to happen, so everyday you wake up I'd that bonus, and when you get a cold or break a leg, you go nuts for a whole but your still alive. It's this which is helping me get by without breaking down and if it genuinely helps any of you, then I'm fulfilling something.

So out of curiosity, do any of you have MS? Or any other issues like that you want to share? If you don't want it out loud and do have MS I would be interested to talk to you, I want to understand what this thing is about and how it affects people, cos I'm not going to let this thing beat me like losing my eye and kidney did. So drop me a PM, and if you do as I asked above, make notes and want to ask if your being daft etc drop me a message.

Oh and for the record, I harassed my doctor, many times a week when I lost my kidney and eye, he wasn't a very good GP, he was a bit of an 'I shall see you next Tuesday then doctor' if you catch my drift. And whilst he constantly brushed it off, I went back until I persuaded him to refer me and each time I was right.

Remember your GP only knows what you tell them, not what's different, or just a quick you know of but they don't.

Anyway I'm off, I have a hospital bed to sit in and twiddle my thumbs in :-D

Sorry to hear that James, you can safely call yourself a man. I'm 22 and if I had gone through half of what you have I don't think I would be still here to tell the story. Hat off to you.

Our family has had some pretty well s*itty luck the past few years with illness, that much so we joke about how members are dropping like flies (it's harsh but it feels that way). I look at life like it's a 12 round boxing fight, some peoples opposition are going to be tougher than others but as long as you battle through and give it your best the outcome doesn't matter. Every fight comes to an end at some point.

Keep your head up fella.

[Phil 87]

Haha, I will take real life stories over BS and deluded positivity for 500 so do share!

As for the healthy, pfffft , fancy swapping bodies? I wouldn't mind vacation...

Lol, it really puts things into perspective, I can't complain about being unhealthy in a thread like this.

As for my uncle, he's much older, I'm not sure exactly but about 60 I think. He's had MS for a long time, maybe about 10 years and it's worsened gradually over that time. He basically has no lower body strength left, and he's losing his upper body strength. He just about manages to walk using crutches but very slowly and with a lot of difficulty.

He uses a little electric buggy to get around when he needs to, but is very reluctant to use a wheelchair. The thing is he used to play rugby so I guess he was used to being physically strong, so he wants to continue to walk with crutches as long as he's able to.

He still drives, has a S-Max with all the controls on the wheel. And he still works, with the armed forces as a mechanical consultant or something (my memory isn't the best either lol). He even goes abroad for work so he's really trying to not let the condition hold him back.

[Ianb]

Sigh, I have to chortle at micros post, it certainly sounds familiar... Nothing worse than going to the doctors looking completely fine, and actually at the times feeling completely fine only for him to say "what's wrong" only to reply with, "well on good days, nothing, on bad days I feel like I'm going to **** myself"

I said do/did above because I feel like I've adapted myself/diet/routine or something enough to not seem to have it anymore. I also really got into going to the gym, I'm not sure if controlling my diet more because of that, or because I was just exercising helped :/

Anyway..

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[jeebowhite]

Thanks guys, Gérard (!Removed! phone won't let me spell it without the enunciation lol) thanks for those kind words. It's been a tough fight but I can't take all the credit, if it wasn't for my wife / fiance / girlfriend (whichever title she had at the time) I wouldn't be here to tell the tale today! The comedy aspect is serious but it's seriously needed at times like these and it's good your family have that positivity and sending humour! I hope things keep improving for you all.

Phil, perhaps it's the age difference so maybe over time I will hit those benchmarks, obviously getting older you lose some strength naturally but perhaps I will enlist in a gym and do all I can to keep the strength as long as possible, but it's good to have other real world experience.

Ian, it really is about adapting your life to the circumstances as you say. We need to keep it all going in the right direction. I suppose we are lucky to have the ability to adapt, whether we can use it or not.

[Lenny]

[SeanW]

Thanks guys, Gérard (!Removed! phone won't let me spell it without the enunciation lol) thanks for those kind words. It's been a tough fight but I can't take all the credit, if it wasn't for my wife / fiance / girlfriend (whichever title she had at the time) I wouldn't be here to tell the tale today! The comedy aspect is serious but it's seriously needed at times like these and it's good your family have that positivity and sending humour! I hope things keep improving for you all.

Phil, perhaps it's the age difference so maybe over time I will hit those benchmarks, obviously getting older you lose some strength naturally but perhaps I will enlist in a gym and do all I can to keep the strength as long as possible, but it's good to have other real world experience.

Ian, it really is about adapting your life to the circumstances as you say. We need to keep it all going in the right direction. I suppose we are lucky to have the ability to adapt, whether we can use it or not.

I hope these three women haven't met!!

No wonder I'm single - you're hogging 'em all :p

[jeebowhite]

Hahaha oddly enough my wife was once upon a time my girlfriend... Lol but, now you make me sound like a pimp

[SeanW]

I'm not gonna let a little thing like the truth or common sense spoil a good dit :p

[jeebowhite]

Haha

Well sadly the brown stuffs coming back at me, the doctors are now less certain it's ms and instead are more certain that whatever it is has passed and they don't know what they will find... That is the most scary thing, I would rather they told me I had cancer, a tumour or 6 weeks to live. I think if they told me 'not sure' as the final result, every ounce of strength I have will disappear.

[Lenny]

Haha

Well sadly the brown stuffs coming back at me, the doctors are now less certain it's ms and instead are more certain that whatever it is has passed and they don't know what they will find... That is the most scary thing, I would rather they told me I had cancer, a tumour or 6 weeks to live. I think if they told me 'not sure' as the final result, every ounce of strength I have will disappear.

+1 i can side with you on that,

Telling you theres nothing they can do,

And its not gonna get any better,

Is difficult to accept,

[jeebowhite]

Absolutely, I'm almost praying it is ms just because It fits so well