Forum

Clive Burr RIP

I used to be a regular poster on the old boards but this is my first visit here - and the first time I have felt a need to connect with other MSers again…

This is probably going to be a long ramble so please feel free to move on before I bore you.

I have looked through recent threads to see if this has already been discussed but couldn’t find anything.

I don’t know how many of you are aware that Clive Burr, the original drummer with Iron Maiden, died this week aged 56. He had had MS for a while ( though obviously it wasn’t the ‘lifelong battle’ that one newspaper it as…).

I am experiencing a welter of emotions. First and foremost is my sadness that someone so talented and admired has died so young and how devasting it must be not just for his many fans, but most acutely for his friends and family.

Then there are many more thoughts.

Some of the online comments have made reference to the ‘cruelty’ of this ‘horrible’ etc condition. I surprised myself by feeling pleased that others viewed it as such - so often I feel that what I go through is seen as ’ no big deal’ - especially by some MSers who are mildly affected. Even a lot of the MS literature seems as if it is at pains to point out that MS is really not too bad and with a little adjustment you’ll be just fine. Whilst I understand the need to reassure the newly diagnosed and also to reflect the advances in care and treatment, it irritates me as I feel it negates my own harsher reality ( I do realise how subjective my opinion is). I suppose I am especially sensitive in the current climate where those in receipt of disability benefits seem to have become the new public enemy.

My confused thoughts then move on to looking at the reality of my situation - assessing just how much my daily life is compromised and then realising that even I do not get any worse it will become much harder to cope without DLA ( I would not meet the current criteria proposed for PIP). I am no longer able to work and I am single so have no one else to share the physical, practical or financial load.

I usually try to avoid self pity ( I have never once thought ‘why me?’ - if anything ‘why not me?’) and for me diagnosis was a relief. But fifteen years in stories like Clive’s bring into sharp relief just how much worse things could get. I am not looking for reassurance that MS does not kill you - I think that is just semantics and I know enough people (including some old users of the boards) who would not have died so soon if it was not for their MS. It is not the dying itself that worries me - my life is not good enough to feel it would be any great tragedy for me to shuffle off - but the increasing possibility of reaching the stage where my MS becomes life threatening and all that that entails. Then I like to think that that would never happen because I have every intention of taking death into my own hands if it looks like I am at risk of becoming totally incapacitated.

Then I think, Oh s**t - does that mean I am already contemplating death? And if so should I not be trying to do more with my life at the moment while I still can? Then I think I don’t have the physical energy and am in too much pain and discomfort to actually get up and do something about it.

And now of course I have mentally exhausted myself with all these thoughts. Then the realisation that I have no one to share them with - then a brief respite when I remember the boards. Hence my long and tortuous post.

If anyone is still with me, thank you for listening.

hi rosebud

please don’t think that you’re alone in this.

i have felt exactly like you but daren’t say anything about it because it would hurt my family.

then again i’ll find something to smile about tomorrow, as i do every day (perhaps i’m easily pleased)

i love looking at the sky - especially the moody skies we get with our weather.

one day i’ll get the paints out.

i look like a right old nutter, walking round looking up at the sky.

ah well, i’m the one who sits rocking on the loo (because it helps me to pee)

take care and find something to smile at

carole x

Hello Rosebud,

No you are not alone, I’m certainly on the same wavelength.

I take one day at a time and try not to think about the furture a it doesn’t exist for me.

Doom and gloom is okay with me but so is the hope that some bright spark might find a cure for this one day - its too late for me as I’m way down the line now - but hopefully it will help all those other lovely people who are travelling along this same path.

(((((((((((((Hugs))))))))))))) Mary

Hi rosebud No, you are not alone. The news yesterday knocked me for six too. But I’ve already dotted the i’s and crossed the t’s. had my will drawn up this week and got forms to complete to leave my brain and body to medical research. So I just negative thoughts into doing something positive for future generations in the hope that I’ll help researchers in their battle against this disease. Xx

Hi Rosebud,I was knocked for six when I heard about Clive,being a lifelong Maiden fan,I remember when he had to leave the band,just on the eve of them breaking worldwide and becoming the superstars they now are,ironic then that MS and the expense it incurred should have drove him into debt,met him once after a show in Edinburgh in 82 and he was a thoroughly decent guy,very personable and willing to spend hours chatting to the people who came to see him and the band,think the bugger would still be there if the security guy hadnt dragged him away.

Anyway thats not why I replied,my wife suffers from MS and whilst its “only” RRMS,it rips my knitting when people say its only mild and she will be fine ,shes 39 with 2 young kids aged 2 and 6,and the changes in her lifestyle and her are not real,I know ive no need to paint a picture for people on here,but you know what I mean,since being diagnosed her whole life has been turned upside down,sleeping all day,chronic fatigue with insomnia at times,optic neuritis,yeah to the casual onlooker its only mild right enough.One thing I do know however,being affected indirectly,ive seen just how strong my girl is,considering everything,I tend to be the one that rages at the insidious horrible nature of this disease,ranting away like a loony at times whilst she just stoically deals with what she needs to deal with,if I ever have the misfortune to be struck down with anything as lifechanging or threatening,I hope but I dont know if I could show as much strength of character or will.

anyway,i feel a bit like a voyeur here at times,but for what its worth,i do find strength from some of your posts and marvel at the way most deal with your ms with humour to varying degrees,you are all,even if you dont feel it,an inspiration to others in your own ways.

thank you for putting up with my ramblings here and please forgive my forthrightness,im still learning

Dave x

Hi Dave A good point that MrH made last night, in response to another poster, is for carers to join their local carers association. Details available in your GP surgery. MrH has found them a really useful crutch…they have recently given him some money to go off and something relaxing, just for him. Xx

Welcome back rosebud. I’m one of those people who tell newbies that MS isn’t the end of the world, life can still be good, etc, and I do mean it, but there is no way of avoiding the fact that adapting to increasing amounts of loss as it eats away at our abilities makes salvaging something worthwhile out of life ever more difficult and, for some, impossible. Like others, I have only very loosely thought about the future. My next (and final) house will be a bungalow and fully accessible, just in case, but other than deciding that Dignitas is not for me as long as my mind is ok and I have some quality of life, I avoid thinking about what might come. That may be because I think I will cope with more physical challenges, but losing my ability to think and read and learn, etc, scares the hell out of me (and my cognitive abilities are definitely worsening). I believe it’s important for the good news, marathon-running-type stories to be publicised, but I deplore the lack of coverage (and public knowledge) of the severely affected. I also deplore the fact that those of us in the middle are largely ignored. So, like you, I am very sorry about Clive Burr’s death, but I hope that the media coverage will go some way to redress the balance. Karen x

thank you Mrs H,probably send Claire away and stay here in all honesty,she needs the break more than me,i had a health scare a wee while back and trying to contend with the two wee cherubs (?) wiped her out,theyre brilliant wee people,our boy who is 6 kinda understands that mummy is sometimes not well,the 2 yr old daughter tho…jings shes a force of nature,an absolute whirlwind,but you cant expect kids not to be kids because your poorly eh? Thing is our 2 yr old has attached herself to me like a limpet,daddys girl lol,which i must admit i love even tho she drives me nuts at times,terrible two’s with a vengeance.

No,as bad as it sounds,Claire at times would be the one to benefit from a break from everything apart from herself,but that probably wont happen,were a team and we came into this as a team and will go out as a team,I know there may come a time,but not at the moment,we just guddle along and get it wrong and sometimes right,but the kids know theyre loved and they have us and the extended family to make sure they do have a childhood to enjoy. It is amazing what we can do when we need to step upto the plate eh? If you had told me I would be a househubby thru choice bringing up two kids and running a house and at times caring for a wife with a different ability (i hate the word disability,always did,not in a pc sense,just always maintained eveyone is different ergo differently abled,afterall the best brain in the world is seemingly Prof Hawking and he is almost completely paralysed,but he can do things i cant,differently abled,way i was brought up),I would have laughed,im ex army,worked as a chef for years,last F/T employ i was a big hairy lorry driver,now im to be found changing nappies and pushing a hoover around,think it was Lennon who said life had a habit of happening whilst we sit about making plans or somesuch,very true.

As abhorrent as i find MS,and i do,i despise it with my entire being,7 billion+ people on the planet and given that we are all different it can affect every single sufferer in a totally unique and different way from the next person,no wonder treatment is frustrating and hit or miss at times,bit like threading a needle with boxing gloves and a blindfold on,i understand perfectly well why the majority if not all of the people suffering from it would sell their souls to be as they were BS (before symptoms),but as glib as it may sound I was always taught to believe,another day above ground is a good day,always the possibility of some clever soul finding an answer to this problem,but if your gone,well…

Ach well,cbeebies are on now,justin has silenced the whirlwind for a bit and shes not chewing the coffee table or handing me everything in the house being helpful,time for a quick cuppa and a tidy before getting the beloved outta bed as granny is coming over.

Sorry to waffle but hey its good to talk,and if i talk long enough who knows,something sensible might just come out,probably not but maybe lol

Dave x

rosebud

i wish to thank for such an honest and open post. 2 nights ago i ‘lost the plot’-whatever that means. my mind and body were briefly totally out of control. i started a huge relapse in june and not getting results of mri until may. i have ‘lost’ half my body and mega speech difficulties. but ‘worst’ by far is the emtional changes. i am a happy,over flowing cup sort of person-recently i cant stop crying-happy or sad. i know the theory re emotional labilty but the animalistic ‘braying’ that comes out of me i have no control over. i have spent alot of time-approx 3 years-strengthening my mind thru meditation and have found it beneficial. i can only guess that my emotions bit has a plague on it-which wouldnt surprise me-but i am left for nearly a year to ‘get on with it’ and not knowing. on a day to day basis i cope as everyone has to. what frustrates me more is the ‘dont worry,it will get better lies’ i know that life has moments of ‘good’ (nothing stays the same-we are constantly changing) which i cherish and i am not niave enough to think its going to get better always. its a huge thing to get ur head round and i dont think that is possible to start to understand how until u r further down the line of disability. i know that everything is scary-tingling toes,sore arm etc but with time and experience u learn to get things into perspective.

suicide is not something i would consider. my dad took his own life when i was 14. i have discussed this thoroughly over the years with various folk and have concluded its the ultimate selfish act,leaving so many unanswered questions for those left behind. thats why i have worked so hard to try and seperate mind and body but my body has given me the new added challenge of physically changing that-so mind will overcome again in time…

so thank YOU fpr bringing this up-i have written this with no tears at all and wouldnt have started a new thread re it…its very hard to explain this via written word-hope i have made sense…

take care all,have a happy moment (or more!) today,

ellie x

ps i understand the previous replies and they reminded me that we ALL deal with this differently-theres no rights/wrongs but what is right for each of us and thats why we even squabble amongst ourselves on here! the differences of opinion should upset no-one cos thats all they are-opinions. if they resonate with you do then agree/follow and if not,ignore. would u let the person thats annoyed you in your house? if not then why let then in ur precious head?! we generate enough guilt etc of our own if we go down the self pity/self beating up route-indicate and change the road cos u can.

if you think this post is rubbish then please just ignore. those that are following my thinking-thanks for giving me this opportunity for further working through my most recent challenge.

It’s akways good to talk…hence why I use the forum !! Think about joining the carers association though…really useful advice and they run an emergency carers scheme which is a very clever idea should the need arise. BTW…the money is for MrH to go get a massage or something similar…not escape !!! And I’ve told him, that means with a licensed masseur not down some pole dancing club !!! Xx

theres been more replies when i was typing mine-bless you all.

karen-u r bang on when u say re thinking/learning becomes affected. thats what i was trying to put over-probably badly but i tried me best…

ellie x

Oh no - I have just lost the long reply I wrote. Grr. I will try to rewrite it when I am feeling up to it, but in brief summary, thank you all so much for your equaly homest replies - ironically they have made me feel so much better for having unburdened myself.

x

ellie i understood you perfectly well my friend,never apologise,or if you do make it for something you never done as opposed to something you did x

and mrsH, bu*%er!!! licensed masseuse? och well ,

i know it aint easy for any of us,we all have our frailties and such,but at the end of the day,its night time and we all enter sleep alone,we all meander thru our own thoughts alone,we are surrounded by family and friends if were lucky,but essentially we are alone in this life,sad but true,(guess who was lonely in packed rooms etc when younger),but we all deserve to have wee moments of happiness,breaks up the bad times and afterall,how would you know you were happy if you were never down? a bit glib i know but im learning a lot from the simple wee rationals that my kids show me,seems we forget how to appreciate the simple beautiful things that make our hearts fill with joy the older we get,i wish you all as many happy moments as your heart and minds can cope with xx

i would ap[ologise for my ramblings but hey that would contradict the above and that wont do,im not making light of anyones condition on here,god/bhudda/mohammed forbid! but in the words of Bill Hicks, its just a ride,like a rollercoaster,up and down,you can be afraid or you can be exhilerated,but its just a ride,may not be the ride we chose but its the one we have got,may as well make the best of it,and no im no eternal optimist,i have my moments like you all,but i remember eventually that this aint forever.

ive no advice i can give,none that would help really, but for me,if it needs done,do it,ie ATOS,DLA,PIP,etc then forget it,you can only do what you can do,if people upset you and put you down,do you need them in your life? its your life you deserve the best you can have,walk away from them, if you need to shout and scream at the world,do so! the worlds bonkers anyway you wont stand out any,one voice in the cacophany.

Taste everything and savour it all,the sweet the bitter hte savoury,even the sour,it all goes to make the melting pot that is your life interesting,maybe not always to your taste,but sometimes just sometimes there will be that one sweet morsel that makes all the other crap worthwhile,hopefully

XXX im rambling again arent I? a habit ive picked up im afraid

Dave

I’m becoming a fan of your ramblings… Xx

me too…

ellie x

its all i can do,i love my puter, all my mates live in it,and after 6yrs of cbeebies i would go loco if i didnt have an outlet lol like everyone on here tho, i appreciate fully the site for its info and support and banter at times, but how i wish there was no need to be here,for any of us, but hey ho eh? suck it up and lets get on with it, could be worse i spose, could be a politician or an atos emloyee, no possible cure for that lot!

ah-livingston-we are almost neighbours-am further down the m74 about an hr or so away…

when some rude folking are ‘testing’ me i often reply that i am in better place than them cos theres no cure for ms but i can still live with it-their incurable ignorance is a wider issue…

gone a bit off topic rosebud but look at all the goodness it has brought out…

any death for any reason is sad but life goes on-the death leaves someone hurt and lost until they find their way again…

ellie x

Hi Rosebud and welcome back. I remember you from the old site (I was PatB in a former life!).

I do so often wonder about this contradiction. I am also one of the ones who tells new users that life with MS is still good and that many MSers continue to work etc… even though I have had to give up work and have cr^p mobility and all the rest… that long list of symptoms.

I remember a few years back there were letters to the MSS magazine ‘MS Matters’ about their articles always being about people with MS who go mountain climbing, run in marathons, do high-powered jobs etc. Since then the magazine has given a more balanced picture… a mix of ‘active’ MSers and those of us who are more severely affected.

I am also aware that while we are saying that MS doesn’t necessarily affect people badly, we are also fighting for MS to be recognised as seriously disabling by DWP and Atos.

So the picture is a mixed one… and I suppose it reflects how differently MS does affect each and every one of us. Very hard to get the balance right. If we stress how bad it can be we scare the hell out of newbies and their families. If we stress how mild it can be we make life very hard for those of us who are struggling every day.

I’m very sad to hear of the death of Clive Burr. And yes, I often remember those users of this site who have died… as you say MS played a part in their early deaths.

I try to live very much in the ‘now’ and to stick to the ‘one day at a time’ approach (God knows I’m always preaching it so I do try my best to practice it)… but sometimes the reality of what my life has become and what it might become hits home and it’s like learning I have MS all over again… and once again I have to grab hold of the reins and take control the panic.

Sorry I don’t think this post is any comfort… but really it’s just to say ‘Yes I know how you feel’… and perhaps, I hope, that in itself is some comfort.

Pat x

Hi, yes it is very sad to hear of Clive`s death at such a young age.

The vast majority of MSers do live a long life. That has to be a positive thing.

The variety of replies you`ve had, show just how different everyone deals with and is affected by their condition.

i dont know where we would be without this forum and the chance to air our thoughts.

I dont have MS, but was led to believe i had for many years. I do have an equally disabling and debilitating monster of a thing!

Best wishes to you,

pollyx

Welcome back old friend.

To save yourself losing posts it is best to type them in word or somesuch first then copy and paste them over.

Liz [still moderating]

x