caring and sharing

00:27:55 o'clock BST
Feeling Thoughtful

well as i am sure you are all too well aware  aol journals will finish the  31st of october.theres been so much written already  on so many journals,that  jland  is over,what will we do,blogspot is a poor alternative, and       jland is dead.     well   NO IT BLOODY WELL ISN'T.   for a start  magic smoke promise our journals will be saved over to blogspot        if you dont know about  it  heres a link  Blogger: Create Blogger Account        go,look,join,start a new journal. heed magic smokes advice  and dont call  your new journal  exactly the same name as your old       hence  i can be found  now  at  caring n sharing       ( note the subtle difference???)  lol      the url  is http://mortonlake-caringnsharing.blogspot.com and  it took me  ooooo    all of 20 minutes to set up the account,select what  my blog will look like,write a quick entry,edit my profile,  (complete  with sexy new pic ladies!!! lol )     and  that is that.caring and sharing lives again. for those of you interested,sue,catslittertray  has started a group on facebook  called  Facebook | not wanted on voyage anymore   please come and join us  if you wish,yes  you will have to join facebook,but  its ok.  you wont be mugged.lol   yours truly is an admin moderator  along with  sue  jeannette  yasmin      leigh  and  a.d. for some reason sue named me as gardening guru.lol.  at  this moment we number 20.please come and join us.its just somewhere we can leave messages,chat,and swap stories. 

jland was never about journals. it was never  all the tags,pics,sidebars.   it is US.  the writers,the people  BEHIND  our journals.      we are still here.  and while we can still all keep in touch,in whatever way  suits  you all best,jland will always  remain.  new,more complicated  maybe?   bit scary.       but it lives on.  forget  blame,forget bitterness that it happened.  accept  it.     because  if  you DON'T        jland  WILL die.

for a while i doubt i shall be writing many entries  on either this or the new blog,but    my first birthday on journals is on october 22nd. i hope to write one last entry on this journal  on or around that date. a cake would be nice.   lol

as for  my life,  i had a letter from the carers who will look after mum when i have a day off,unfortunately  they are fully booked.   not heard from either of the social workers about  it,so im not sure what is happening.    i have also been refused  invalidity  and mobility allowances.      expected that,i was warned  we will have to appeal.  its  normal apparently.  i think  they hope  people will just  throw the letter in the fire and go away,i  would        many  more  do.     luckily i have a good disabled advisor.    she is coming to see me next wednesday.     and will fill out the necessary form for me.     i know,in my heart  i bloody  deserve  this allowance,for years  i have been in pain.   i just never knew  the benefit was there        now,i  think   well  why not  me??     many more get it   some  not as bad as me.       we will see.   

whatever happens,if any of you want to mail me at any time,please do so.  mortonlake@aol.com           been my home for  nearly 5 years.   and will be for manymore.  whatever its faults,aol is the only isp i would use.why??  because my friends are  here.    take care jland.   i shall see you again .   mort.

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 5 comments: Show Recent | Add your own

01:49:12 o'clock BST
Feeling Ashamed

I can barely write these words. the shame of it.but the time has come for me to admit to you all my shameful secret.  I AM AN ADDICT.   it started  so innocently,a friend got me into it,at first  i wasn't really interested,then slowly,before i realised  it          i was hooked.      now,here  i sit     twitching  from  withdrawal symptoms.   how low  have i become?   so what is it   i hear  you ask?  cocaine?  heroin??  crack??   the demon drink?    maybe  pot  or ecstacy?   no   far,far  worse.  i   morton lake  have  become an  addict  of            facebook.     and  to be more precise    owned on  facebook.         hangs  head  in shame.         lol       now  i know a lot has been written about facebook,and  other social networking  sites,and  yes  there are a lot of rubbish  on there,  but  i have got hooked on owned,  basically  you  buy "friends "photos  and earn  "lunchmoney"  for doing  so.   think  stocks and shares with a touch of poker  thrown in.   the secret is to know when to stop buying them back  lol.   and  before anyone says anything        i know a lot of jland  already are on facebook,and  its  sister site  my yearbook.  i got 3 as friends.   any one else  reading this  happens to be members,add me  lol.         so there you have  it        my shameful secret is out.    

actually  the break from writng this journal has done  me        and you    lol     a lot of good,i was finding it hard to write entries,writers block.lol.   hopefully i am back  for good.   but if i am away for any length of time,   at least now  you know  where  i am  lol.  wonder  if that pic sold  i just bo..........  oops  sorry   .ahem  

now, whats been happening?   mum  has had a lot of pain with the arthritis,and as i said  getting very forgetful,but  at the moment  seems pretty much ok.  got chiropodists tomorrow,so hopefully  her feet  will be easier  for her afterwards.  my MS?  ah,now  that  im afraid  is not so good.  i had a fall last week which has left me feeling  very sore.  i was in the garden,just planted a hardy fuschia out that had been in a pot all summer,trod it in,  came over dizzy,went backwards      so i automatically  stepped back   and..................fell straight over  the bloody water feature behind  me.   went down with a crash too.        that hurt.   swallowing bad at the moment,speech a bit slurred,legs hurt,ankle is  still swollen although the anti inflammatories  do help.   still going though  lol.   

i finally had an answer about the carers grant i had applied for. 2 social workers came last week to see mum an me.  ( im pretty sure they travel as pairs for moral support  lol )  my assessment officer is a new lady as the one i saw last year  is away on maternity leave,    and  she  was  quick to tell me          of course i am entitled to a carers grant.  they rang me the week before to make an appointment to come and see us.   the other lady is mums new social worker.she came to assess mums  needs.        although   quite  what she thought had altered  i am not sure?   and         i  did notice        that she is the  4th i have seen in a short space of time.  fast turnover in that job.  i do feel sorry for them actually.  it must be a hopeless task for them sometimes.

to cut a long story short,i am going to get a carers grant  to enable me to go out  one day a week,using  bus  and train         driving  long distances  is painful for me,   and  i decided on days out,rather than  going away  because  i dont think  mum is  too good  at me being away from her for any length of time,so i thought,a day out,once a week  will get her used to me being away          and  maybe next year  i can get away  for a week or so.        her social worker is arranging for a carer to come in to give her a sandwich  and cup of tea for lunch,also  crossroads carers will come for 3 hours  in the afternoon to sit with her,  this arrangement will be ongoing,  i am just waiting for  the cheque,and confirmation  when this can start.         to be able  just  to get to Norwich  for the day,look round the castle museum,cathedral   etc.        that  will do  for me  for now.   and wont be too stressful for mum either.  she knows i will be home around  5ish     and seems ok with the idea.

tracey has been on holiday for the last 2 weeks,so we have been getting up a bit later,she is back with us friday,i didnt want another carer in her place,as before when tracey had a holiday   her firm  wanted  mum to  keep having  different carers in each day, they always seem to be short staffed   so  we said dont bother. 

the  flowers  in the pots and baskets have all been dumped,and  i have winter flowering pansies in them in their place.    £3 for 20 at tescos,not a bad price,but the weather  turned warm just after i put them in  (at last  lol )  and they aren't doing all that well. i will post pics  later.      as for the tomatoes   they are  pulled up and dumped.  i can safely say  they were the  worse i have ever grown          tasteless,tough,not very nice at all. 

So,there  we are.  i think  i shall be with you again  as normal,but  i  dont promise  to read quite as many journals as i was  doing.   what with  facebook,and  poker,( i am playing a lot more than i did,and have joined a private league on AOL games,anyone  interested  in  good  poker,free to join  and  of course  play,i cant afford to play  for cash  lol,with  prizes  that  can be won  for no fee,lovely people to play with,get in touch and  i will mail details.)  jland   sometimes  gets slightly ignored by me.      but  i  do read  your journals.  i  am always  here  if anyone  wants  me,  i  do still care about you all. thanks for all your kind mails and comments,take care all.             

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 15 comments: Show Recent | Add your own

00:48:03 o'clock BST
Feeling Sad

it is said everyone remembers what they were doing when President Kennedy was shot,when the news of Diana,Princess of Wales was killed,   and    9-11.   the most awful terrorist attrocity any of us could ever imagine.     Well  it's true in my case.       Kennedy,i was a schoolboy,just about to have tea,when the news came on tv.     Diana,i switched the radio on  that sunday morning to hear the local news.       as for 7 years ago,i had just got home from the hospital,i had been for a MRI scan on my neck,back,and brain,the second i had had,trying to determine the cause of the lack of sensation in my hands,       well    7  years  on,  and with MS  diagnosed   i now  know.

I had just got home,mum was not so bad then,she was still reasonably mobile,i was in not such pain.  i had driven back from hospital,just made a cup of tea  and was eating a sandwich  when         NEWS FLASH,   the twin towers  had been hit by an aircraft, dreadful accident,       as  mum and i watched        the second plane hit,and  we realised  this was no accident.      something  evil   had  just  happened.    and  the world  was never going to be the same again.      Here in the UK  we have had our share of terrorist attacks,Lockerbie,the IRA bomb attacks,  so many we  had  almost forgotten  them all.   9-11 was different.       not just  the sheer scale of the attacks,the awful loss of life,the sheer horror  of it all,   these attacks were carried out  by extremists  willing  and eager  to die in the process. the world had entered a new phase of terror.   one which  we still fear today,7 years on. the result  of these attacks? War in  Afghanistan ,and Iraq followed.  making  no comment  on either         this  is not the place,i am not qualified.  

I took 2 minutes  today.   stood in silence,remembering  where  i was  7  years ago today.  MAY THERE NEVER BE ANOTHER 9-11,EVER AGAIN.

 can i just say thanks       to everyone who commented,emailed and IMd me  after i had posted i was going to be away from journals.        you are all wonderful.    i cried.     i really did.       thankyou all.       there is a reason i was going.  that reason    is  there is someone who reads my journal,also visits mum sometimes.   and i was scared  she would say something to mum about  my MS,or about anything i have written about  mum.i did consider going private,but really didn't want to do that.      anyway,i had a long talk with this person yesterday,explained my fears,and  she has promised never to repeat to mum anything she reads  here.       my mum  is getting  very forgetful.     and  that is all i want to say for now.       just  one more worry  though.       I went to Drs.this morning,and he looked at  my ankle,which is swollen        and  very painful.   driving  is  so difficult,some days i darent try.  he says  i am walking  on the side of my foot to try and ease the pain in my ankle  and am making  my heel and tendons in the foot inflamed.  he gave me anti-inflammatories  which i am taking 2 a day.hopefully these will help.        i do know,mums volunteer visitor came today at 2 to see her,i made her a cuppa,as it was raining and i wasn't feeling well i went to bed,and went out like a light for 2 hours.      bit stiff and sore.lol.  maybe they will help.    i  really hope so.take care all

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 15 comments: Show Recent | Add your own

06:55:12 o'clock BST
Feeling Sad

 

 

                                                           

IN MEMORY OF THOSE WHO DIED IN 9-11.

            WE WILL NEVER FORGET.

I was going to write a small tribute here,instead may i please ask you to check out jeanettes moving entry on her journal     Jeannette's Jottings    who has done a far more lovelier tribute than i could ever do.    GOD BLESS AMERICA.             take care all

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 14 comments: Show Recent | Add your own

00:45:51 o'clock BST
Feeling Depressed

there are  things  i want to put down in here.   but  i dont know  how to start.  all i know  is  i may be gone from this journal for a while. MS  seems to be winning  the fight,all i know is pain,ankle so bad i cant drive at the moment,even with a support.   got 2 social workers coming next week,see if i can get any respite.  but  mum is not well.       all i am going to say,because  i  cant bring myself to write any more about  it.      it is getting  harder  for  me to find anything positive to write about,and  i  really dont want pity  thanks.        i shall  still be reading some journals,but forgive me if i dont comment on yours.     this journal is one year old next month         i hope to be able to post a more positive entry  before then.        thanks  for all you comments.      take care all 

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 21 comments: Show Recent | Add your own

01:07:33 o'clock BST
Feeling Thoughtful

what  with  my  own misery  just  lately, pain in  my  ankle  is  so much worse  i  now wear an ankle support, and  editors  choice,etc.i  forgot  to write about the person  this  journal  is  really  about,well  a  lot  of  it anyway.  my  mum.   it  wasn't until someone asked  me how she was  i realised  i hadn't updated  on her  gout  lately.  and  there  is a very  good  reason.   IT'S GONE.   ( hope this  desk is wood  because i am touching  it as i write  that.)    well,just  about  anyway.   ever  since  the last  time she went to the chiropodists  and  saw  that  male  chiropodists  her  feet  have  been  so much  easier.  the  uric acid  crystals  have all but disappeared,and  she  is  much happier  for  it.    If  only  the  arthritis  in her  knees   would  do the same.    she  really  is  suffering  with  them.    but  small mercies  anyway.      least  she  can  get about  a  little  bit  easier.  tracy  still comes,the  fact  she  only  comes  now  for  15  minutes  seems  to have  been  forgotten,as  tracy  gets  here  earlier  to compensate   lol.   she still  the  same  tracy.     no comment   lol.   mum  likes  her,and  they  get  on   well.   that  is  worth more  than  anything.  i am finding  driving  so painful  my  right ankle  gets  all  the  work  when i drive,but  this  support  does  help.       just  enough. and  of  course  i  rested  it all  yesterday.   coughs.      ermmmm   ok,  i  did  a  little  bit  of  gardening.    strimmed,cut  hedge,edged  grass            shuts  up.           look,it  needed  doing,and it was  a lovely  day.and  it  took  me  6  hours.   but  i  do  rest  every  few  minutes.  i  have  to.but  if  i give  up        at  least  trying        to  do things  normally,i  may as well give up altogether.        not likely anytime soon.        so   don't scold me lucy  lol

Now,some of you may have  noticed  that  our profiles don't seem  to be  on view at  the moment.     not  noticed??  try  it.   see  someone on your  buddy  list??   ok      lets  click  on  their  name,click  buddy  info  and  read  their  profile....................it  says  system error      please  try  later.    and  has  for  past  few days.      so?  well,i use chatrooms,and  its  nice  to see  who people are,   also  though  if  someone  leaves a comment  on your  journal,and  you don't  know them   its  good  if they  have a profile.  at  least  you know  if  they  male,female,etc.       my  profile  is  quite  long.   ( romantic    one  dear  lady  called  it,load  of  bull**** some  more  sensible  people say.lol)   and  contains  a  lot  of  pictures.  over 100.       so  i went  to a lot of time and  trouble  to create  it.       and  no-one  can view  it.         why??        so  today  i went  on  aol noticeboards,they can be found  in the chat and community  section  on quick start.      sure enough  someone had  asked the same question i was going to.  why can't i view profiles???  the  answer  can  be  found  in  the following  link   AIM Profiles - Changes Are Coming to Your Profile Experience!    snappy  little  title.     basically,your  AIM  profile,which  was  AOL  member  profile,is  going  to  be replaced  by   Bebo  profiles.   Bebo  is a social  networking  site         now  owned  by  AOL.    i  shant  bother  writing  about  it,please  look  yourselves.          the  bit  i find  annoying  is,  if  we  want  to  keep our  profiles  we  must  move  them to  bebo.or  they  will vanish.  on  september  15th         now  i  have had  no  details  of  this.      no  emails  from  AOL.  nothing.  so,  i  have  signed  up  to  go  to  bebo as  they  ask,apparently  my profile  will now  be  uploaded automatically.     but  AOL   should at  least  tell us they are  doing  this        and  soon,surely?      in the  meantime    if  you  wish  to view a members  profile,in the long search box  along  the top of  your  screen  type   http://aimprofiles.aol.co.uk/       followed  by the  screenname          if  US   aol   it  is   aol.com/         hope  this  is  of  interest.    please  make  sure  your  profiles  arent  lost  to  the  ether.

september  tomorrow,soon  autumn will be  here,and  we have  had  such  a bad  summer.   let's hope  we get  a nice september  and  make  the most  of  it.    take care all

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 20 comments: Show Recent | Add your own

00:28:08 o'clock BST
Feeling Quiet

well,after  all the rush getting things  sorted yesterday i thought i would  post  the entry  i ws going to write  next  week. clear??  good  lol        it  was   rather a surprise to find my entry  used  yesterday,and  caught me completely unawares.   just  want  to say  a couple  of  things about  it.  

to be asked if  i would like to be guest editor  was a great honour  to me, 10 months  journalling,part  timer  too  lol    it  was a  lovely surprise.     you  see,i have several different "lifes" on AOL,   jland  is  one  part,i  talk to my  friends  on IM every night,i  use  chatrooms         well 50s  romance  is  the  main one  i use,i  play  poker every  night,ive  just  joined  a league,nice  people   good  poker.no,not  for money.lol.  and   email         so  journals  tend  to get rather neglected.  and  i feel a bit guilty.  i have  over  50 on  my  favourite  sites   saved now,i tend to try  and  read  a  few every  night,i  get  alerts  for around  15  or so,and  those  i do  read  when they  are  posted,but  some  i  hardly  get  round to reading  for ages.      even  the  ones  i picked  i dont  always  read  when  they posted,  but  i  do try  and  keep  up.this  made  it  so hard  for  me  to  pick  my  favourite  ones.          and  if i am being  completely  honest,there  are others  i  may  have  picked as well.but  3  are  private,and  1  is  off aol  at  the  moment.           not  an easy  decision  to  make  by  the  way.           not  who  to  mention,that  bit  was  easy.          but  who  NOT  to  mention,that  was  the hard  bit. 

every  journal  is  different,we all have  our  story  to  tell,our  lives  to make public,our  thoughts  and  maybe  fears  to show.        and  when  i  read  your  journals,i  think     someone  went  to a lot of  effort  to write  this.  i know how  hard  it  is  sometimes  to  write something  someone  will  read           and  hopefully  enjoy,and  comment  on,and        come  back.   so  how  can  i  pick   6       7    whatever?? but  i had  to.   so        why  did  i pick  those  journals??  as  i said,  i  love  reading  those picked,and  in  one  or  two  cases  i think   should  be  read  by  more  people.         but  why  didnt  i pick  YOURS?         does  that  mean  i  dont  like  YOUR  journal??             NO.        if  i have  ever  commented  on  your  journal  it  means  i have  read   it,and  liked it  enough  to comment  on.           i  had  to make a choice.      personally  i think every journal  deserves to  be picked.         

i enjoy  wriying  this  lournal.          it  now  means  a  lot  to  me.         jland  means  a lot  to  me.          thanks  for  making  this  very  tired  carer        welcome.       every  commment  is   appreciated.                take  care all

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 17 comments: Show Recent | Add your own

21:25:18 o'clock BST
Feeling Confused
well         i am your guest editor of the week.    on  AOL Journals: Magic Smoke.   and  i have  written an entry  for same.         except.       i was told  it  was  NEXT  week  lol    so   as i only  just  read  my  mail,   and  as  i have  had  problems  with  pc       it caught  me unawares.       i had  the entry  written all ready for  next  week  and  posted on the guest  editors  staging journal,for some reason  it  was  used  today  instead  of next  week.        i  shall try and  let  all my  choices  kmow  as  soon as  i can,if  they  havent  read  magic smoke  already.          thankyou  for the honour                take  care all  mort        DONT  PANIC        LOL

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 15 comments: Show Recent | Add your own

08:57:54 o'clock BST
Feeling Annoyed

you may remember i wrote a few weeks back i was applying  to get away for a few days sometime. i wrote a long letter  to  my  carers assessment social  worker (casw in future,its bit of mouthfull ) asking if it was possible to get any  help towards a break,financial  help that is.when i had my assessment  earlier in year,which  as  my early  entries  told i had  waited  for,for  4  months,the  casw promised  me several things.  mum  would get a voluntary visitor,    that  took  3  months.        yes C  comes  now,and i am grateful to her.             but  it took ages  to get  set  up.        i was promised  help to fill in forms,    i had  a letter  from the person concerned,he was busy  but would be in touch.  never  heard a word.   as  i  already  have said  i  had a spell of self denial  and  never did anything  about  it  until the other  week.       and  that  was   because of my  MS nurse  giving  me  different  organisation  to go to.       never  heard a word  from  other.        i was promised  help from carers  organisations,and  yes  i am now  registered, never  had  to use  them yet         but  they are there.         and      carers  grant.      casw told me  there is a grant carers can apply for every year,up to £200     for  help   with things  like  breaks,doing  hobbies  etc.       i  asked  for  help  towards a new  bed for  mum  as hers  was  broken,and  it was making my  job  hard  to make  it.        i  got £150           nowhere  near  enough  for a new  bed.   so  i  repaired  her  old one,and  we  bought  a  nice   thick  new  mattress  for her  with  the  money.     cost  £170              but  mum is  comfortable.         now  she        casw        told  me  this  grant  is paid  every  year ,  just  apply,say what  you  want  the money  for,runs  from april  to april.    so  thats what  i had asked  for  my  break.   carers  grant  to enable  me to get away  for  3  days.          hadnt  heard a word  until wednesday.

i had gone to doctors,got  home,mum said         social services  rang,  will ring you later  this  afternoon.        never  did.        next  morning  i went  up shop to get  papers,came  home        they  rang  again  said  mum               will ring  you  lunch time.        never  did. finally  she rang me friday.     a  new social worker  i have  never  met  before,  asked  me how  things  were,   and  when did i want  to  go away?  promising  i thought.      mid october  i  said.       ok  she  said,i can arrange  cover for your mum,extra carers  to get  her  food etc.          blah,blah.        no word about  money.       then  she said,oh  i am reading  your  letter,   you wish  to know  if there is any  financial  help.well  there  is  this charity  you could apply  to,i  will send  details,       ermmmm    just   sec.i  said          i  applied  for  carers grant,         oh  she  said,you have  to  get  in touch  with  work and  pensions          carers  allowance  is nothing  to do   with  norfolk county council      now.................   whoah,   i  cant  GET  carers  allowance,  the  benefit  i am on  i cant  get  it.        i applied   for  carers  GRANT.         i  explained  it all to  her.         and  she had never heard of  it.         said        maybe  it was a one off?   no        i was told  every  year.            maybe  it  was  a  social  grant,they  have to be  repaid  but....................NO,ITS A CARERS  GRANT.       long  and  short,  i  had  a  small bit  of  paper  come, with  this charitys address on  and phone  number   to  apply  to see if i can get any help from them,   she  will look into  carers  grant,but  couldnt  find  anything  on her  computer  about  it.         goodbye  mr  lake.       

i went  on the website  for carers.        and  i cant  find  anything  about  the grant  either.   still got  the slip  that came  with the cheque,and  sent  it  to the social  worker,but it does  look like        thanks  to cuts  in social security  funding,    carers  grant  has  gone.          along  with any  hope i had  of getting  away.        i havent  got  money to  waste  on taking a  holiday.    i only  applied  because  i thought  the  grant  was available.     working  on  what you  never  have  you  never miss,i  guess  i am not  really  too surprised.          but  i  am  just  one  carer.       there  are  thousands  in  the  country.           and  for  some,    that  grant,   to  be able  to  go away  for  a  little  break          is   a  lifeline.           i  shall apply  to  the charity,  but        i  am unpaid,  i  get  little  help,        surely  more  could  be   done  to  help  the  helpers?   we  save this  country  tens of thousands  of pounds,by providing  care  that  otherwise  would  have to  be funded for.             a  caring  society??         take care all.        many,many  thanks  for all the lovely  comments and emails  i got  over  the  MS  entry.    mort

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 23 comments: Show Recent | Add your own

01:18:33 o'clock BST
Feeling Thoughtful
Hearing abba  

MS   2 simple initials,   stands for multiple  sclerosis       basically,wont  bore  you with details   it  means many lesions         or  scars.   it is a disease  of the central nervous  system where  the bodies own immune system turns on itself,stripping the myelin off  the nerves         (think of  myelin as the insulation,the nerves as the bare  cable  as in an iron or kettles  flex say. )  and  causing  "short circuits" in the body.  these  short circuits  are  the cause of  pain,loss of sensation,all sorts  of unpleasant  effects.   depending  on the number  of  lesions           and  where they are.   at  the last scan 2 years ago  i had  4 in my brain,5 on my spinal chord           something  like  that.   was  in   a  daze  when i was told.   doesn't  matter,  pretty  sure  theres  one or 2 more  now.

lets  just  clear up one or two misconceptions.   YOU DO NOT DIE FROM MS.  and  before  my  lovely  friend  lucy, day-to-day-life-by-Lucille4364 , starts screaming  at  me,let  me just explain.  her  beloved  and much missed  son  alan   died  tragically   in his early  40s     from  complications  caused  by  MS.       he  had a really aggressive  form           and  sadly   it  killed  him. please visit  her journal  and  read  her moving  tribute  to  him,and  how  it affected him.      makes  sad  reading.      and  lucy,   you have  been more of a help to me  than you will ever  know  in  my  coping  with  it.but noteveryone will go on to  get  that bad.

1 in 4 people end up in a wheelchair,or paralised in bed (like poor Emma,Wendys  21 year old daughter,bless her.i asked  jland to pray for her,as she had a bad  chest infection a while ago.she  got  over  it.  one  day  sadly  she  will not. )         but  that  means   3  in 4 people  will  not.  many  people  have  MS,and  never  even realise  it.its not found until after they  die and there is a post mortem.    several  different  types,if you really are interested   please visit  the MS societys  website          the  link is on my sidebar.   EVERY MS SUFFERER  IS DIFFERENT.     How i am now,doesn't  mean its  how i will be  next  year,or  even  next  week.  i  could  go  downhill very  quickly,or,like  my next door neighbour,remain  pretty  mobile  for many  years.   WE ALL SUFFER IN DIFFERENT WAYS.   now,  i am a very  private  person,so  some things  i have'nt  told before,except  in  my  "black"journal.       the  private  one  i keep to  scream in .   its  not for public viewing.   not  even  in  my  name.       now  i am going  to  tell it  all.   

MY SYMPTOMS.    vary  from  week to week,these  are  what  i  have  had/have now/never bloody  want again.    

loss of feeling  in my  hands and  fingers,at  first it was  just  the right   now  its  both.   think  pins and  needles,  or  better        imagine plunging  your  hands  into stinging nettles           that  burning sensation??   i have  that  all the time.

spasticity.    it  means   a  jerking, uncontrolled  spasmodic  "twitch"    i  get  it in  legs,and  left  shoulder.  i  have woken  nearly  screaming  in agony.           Pain in  my  legs,  a dull "ache"   that  wont  go away.           my  right  ankle  is  bad.  very      also  the  left  but  not  so bad.  MS  causes  ankles  to  swell              a  lot of  my pain  is  also due to arthritis  in them as well.   balance  problems,  i  do come  over  dizzy  often and have  had  3  falls.   im sure  i told  you lucy.   lol   sorry   but   some things  were  too painful.

optical  neuritis.      please god never again.    a  sharp  stabbing  pain  from  "behind" the eyeball.    thankfully  it  cleared  up  fast.            "the  fuzzies"     my term for it.  actually  it  was  a friends  in  chatrooms  term  for  it     she  has it as well.         i  nicked it  sylv  lol.          i sit here  sometimes,and i cant  think.   i  cant type  as  i cant seem  to  know  where  the letters  are,       usually  if  im tired.        it  passes but  its  scary. wonder  why  i dont  post  as  often as i used  to??    these  new  tablets  do help  though.

incontinence.         hide  that  one  up,no-one  may notice,        it  has  happened  3  times,with MS  you  can lose  control of  your  bladder         that  spray  i used  last  week  will stop  that          bit  too well  lol     its   very  embarassing.         also  you  really  cant   just  wait  to  go to the toilet,if you want  to  go   you  GOT  to go,no choice.

impotence.      well,  lets just say       "  fings aint  what  they  used to  be "     and  leave it at  that.   and  yes         viagra  will help.     

swallowing  problems.   sometimes  food,tablets   etc.get stuck,the nerves  in my throat  that control  the muscles   dont  always  work properly.          speech problems.   not  bad but i do slur  my words  if  i talk a lot   or i am tired.      depression.       ya think?  lol   

so         sounds  horrendous doesnt  it??  there  i  lay,  twitching,screaming,peeing,      except  i  am here  typing  this journal.  yes  my  ankle  hurts,yes  my  legs  ache,yes  my hands  are  numb               and  me  bloody  back is  killing  me.            but  i can   walk,ok  i do use a walking  stick.   (jaynee  hun  if  you  reading  this,can i have  ya pink one??? lol)        i  can  care  for  my  mum  still,ok   sometimes  the  house  doesnt  always  get hoovered/dusted   etc.  but  who  cares?  its  reasonably  clean.  i  stillcook,just  being  very  careful  how  i  hold  hot  tins.        i  still can drive,  if  i feel  very bad,we  don't  go out in car.       common sense.      i  still do my garden.      ON MY GOOD DAYS.         and  thats  the  thing.       there  are  days  i  really  cant  do  anything  except  feel sorry for myself.          so  now,i dont.   mum understands now  better,  and  we  get along  from  day  to  day           we  help each  other.

so,  anyone  who  has  got  MS,or just  diagnosed  with  it,please      don't  despair.   hopefully   you  will have a long  and  useful  life.   just  take things easy,   and  don't  do what  i did for  these   past  7  months or so.    pretend  its not  there            it  is.   but  it can  be  tamed.           at  least         i am going  to have a damn good try.    take care  all           and  thanks  for all the comments  on my editors  choice entry.   even if  2  new  readers  did assume  i was  female.       lol          you  all help,more than you can realise               mort  

Written by mortonlake Link to this entry | Blog about this entry |  Add to del.icio.us |  digg this This entry has 26 comments: Show Recent | Add your own