Sunday, 17 August 2008

a grave mistake part 2 the MS bit lol

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  

26 comments:

gitterdunna said...

Just maybe you have helped someone who may read this and  may have these symptoms and don't have any idea what they may be. Female??That's cute:) Take good care, Mort and many GOOD days to you:)........alice

chefkelly25 said...

Hey Mort,  Thanks for sharing and I am sure others that may have MS will appreciate your being direct and honest about MS.  Kelly

dsonney01 said...

thank you for sharing, I realize how difficult it was to do so. It helps us understand more coming from you that looking it up. Dannelle

bojgill4375 said...

Just came from Lucy's journal. TY for sharing about MS. None of us just never know when something like this could happen to us or someone close to us. I am sure that the pain is unbearable at times. That sure looked like a big job you did with the graves. :(  Hope you have some better days soon. Janie

jeanno43 said...

Thank you for being so open and honest about it Mort. I must admit I knew very little about the disease apart from its name, never having known anyone who had it.  It does help to understand more about it and I think you are coping bloody well to be honest.  Yes, I know about Lucy's son, I put a memorial tag (made by Sugar) on our tribute journal for him. So carry on the good work and keep on writing. You are an asset to J-Land.
Sorry if two people thought you were a girl, I did make it plain enough by saying  "he" and "gentleman" and even giving your full name .

ally123130585918 said...

Hi Mort just caught up on your last entry ~ and thankyou for this entry it was so open and explained your symptons perfectly ~ so glad you decided to share with us ~ It told me a lot of things I was unaware of ~ Ally x

marainey1 said...

Congrats on being an editors pick this week.  I too was one chosen by Jeannette.  I'll put your journal on alerts and be back to visit.  'On Ya' - ma
from GOOD MORNING SUNSHINE JOURNAL.  

lucille4364 said...

Hey Mort I am back, to me.  Thank you for being so understanding.  You are so good for me.  You keep me grounded.  I want this to be a good day for you.  I do know all the symptoms but be careful driving with those black out.  I need you>   Lucy

lanurseprn said...

I'm glad you decided to open up about yourself.
Love Pam

sybilsybil45 said...

Thank you so much Mort for that wonderful write up...I have known quite a few folks dead and alive !! who had/ have MS.  But I have never actually read such well written explanation of how it can affect some people.  You Brave ???  what a laugh that is....Wonder why people say we are brave ??  we just have to put up with whatever is thrown at us...Bravery I think is if I put myself in danger perhaps for someone else...but me Brave ?? like you I have to smile x...Bet you aint been gardening today...it is sweet pee-ing down here at this moment...poor old Mary has just gone home she will be soaked through before she gets over ! We had our summer picnic for the old folks today...what a daft idea a picnic in August...we ended up having an indoor picnic instead !!  LOve for now  Sybil x

http://journals.aol.co.uk/sybilsybil45/villagelife/

sybilsybil45 said...

Thank you so much Mort for that wonderful write up...I have known quite a few folks dead and alive !! who had/ have MS.  But I have never actually read such well written explanation of how it can affect some people.  You Brave ???  what a laugh that is....Wonder why people say we are brave ??  we just have to put up with whatever is thrown at us...Bravery I think is if I put myself in danger perhaps for someone else...but me Brave ?? like you I have to smile x...Bet you aint been gardening today...it is sweet pee-ing down here at this moment...poor old Mary has just gone home she will be soaked through before she gets over ! We had our summer picnic for the old folks today...what a daft idea a picnic in August...we ended up having an indoor picnic instead !!  LOve for now  Sybil x

http://journals.aol.co.uk/sybilsybil45/villagelife/

luvrte66 said...

Dear Mort, congrats on being a Guest Editor pick. I was delighted to see you on the list.

Thank you for educating us about MS. It sounds like you have bad days, but your attitude is amazing. I pray that you have many more good days than bad ones.

All my best,
Beth

rdautumnsage said...

My dearest Mort, from what you've said to me in the past I know this was not an easy thing to write. I think you're courageous sharing this part of yourself. You just might be helping someone else out there and not know it.

I've had to do the same recently, re-evaluate my life and appreciate what I can do, on days I have the energy to do them. Other than resent having to slow down and take it easy. I've learned to appreciate the down time with a good book and quiet moments in the yard.

We all do what we can with what we have. I'm so glad you didn't let the MS stop you from living a full life. You humble me with your courage and inspiration dear friend. (Hugs)Indigo

dolfin393 said...

HEY  morts  you are a great guy, fun to chat with  and dont you ever  EVER do yourself down !!  you have overcome so much this last year i have known you, and you have more strength than you give yourself credit for ............ just keep pressing on mate !!!    xx dolfs

pharmolo said...

Excellent entry, Mort

jacsher said...

Great entry Mort.  For us neophytes it is a lot of learning. I know trying to understand is not the same as understanding.  I am sure to REALLY UNDERSTAND one must be there.  Of course after reading this, that is one thing  I do not want to learn first hand.  

Very vivid and well written.  Thank you for taking th time and EFFORT to put it into words.

You are a corageous guy, and a blessing to Mum I have no doubt.  Take care friend.
Jack

mjgm1954 said...

And with all that you have still managed to be a friend , a comforter and an inspiration to all who meet you!  
yes my teruko has a sister in law with m.s. she is in wheelchair but lives a vital life and active on computer and church every since I have known her these past 8 years.
with these shingles i have got an insight into what you feel sometimes. dear Mort. Pain so bad I cry out to God. with my diabetes i have blurry vision but no pain, and stinging fingers and toes that used to go numb.  also causes bladder probs. every where i go first thing is to find out where the toliet is! lol  gonna buy some adult diapers after i loose weight. now heiney is too big to fit them, lol  but with all this I rejoice because will one day shed this rickkety ole body for a new one in heaven. and life is a gift , a treasure if we dedicate it to the glory of God! and if we have friends like you to love !  hugs  and you know the only man in u.k. i love more than you is THE DOCTOR, lol

funnyface0s0 said...

My Darling Mort, that was such an honest entry and i hope it will help other suffereress of MS or those caring for an MS sufferer - you have so much to put up with and yet you always sound so happy and cheerful.   I admire you so much, you are a warm and wonderful man.   You certainly can have my pink walking stick !!  lol....
Speaky soon
Big Luv - JAYNEE xx

darn36 said...

Mort you explained MS better than my book on medicine and nursing.
You are certainly an inspirations to us who complain of a headache, may God
help us.  I read how you face each day and I am amazed, the way you take care of your Mum, your garden and still have a wonderful outlook on Life.  We read
but still  cannot imagine until we walk in your shoes. GOD LOVE YOU.

Thanks for walking through the steps of MS.  We need this type of teaching.

Shirl

darn36 said...

Mort you explained MS better than my book on medicine and nursing.
You are certainly an inspirations to us who complain of a headache, may God
help us.  I read how you face each day and I am amazed, the way you take care of your Mum, your garden and still have a wonderful outlook on Life.  We read
but still  cannot imagine until we walk in your shoes. GOD LOVE YOU.

Thanks for walking through the steps of MS.  We need this type of teaching.

Shirl

darn36 said...

Sorry Mort my comments appeared 2 times.  Computer error not me.

Shirl

linnpooh said...

{{{Mort}}}
I'm so sorry that you suffer so from this awful disease. I will keep you in my thoughts and prayers. Thank you for your openness & honesty in sharing.

Pooh Hugs,
Linda

frankandmary said...

Mort, you are pretty amazing, & the sense of humor is SO intact ;-). But that means 3 in 4 people do not.....I like you take on things very much. ~Mary
http://journals.aol.com/frankandmary/JustMary/entries/2008/08/19/household-balance-sheet/510

mjgm1954 said...

hello dear Mort, thank you for visiting my journal. What a sense of humor you have!  
Tortchwood may be dead but our friendship is not. It's still alive and kicking, speaking of which please turn around. My foot has an appointment with your heiney for saying that I am your friend so that  you can keep me posted about dr.who!   lol   Much love, jun

naperdillygirl said...

Hiya my new Brit bud.....I've got friends coming from London in a few days, and I have many more over there.  Some from the midlands, (near Rutland Water), and some from West Yorkshire, I've also got some from Bristol (where they talk real fast, but aren't anything like the Welsh!! <wink>.  I have met them all, I've been there, and they've been here, so now I count you in as a new one!!  

MS is so very difficult, and I do understand what you're going through.  I think maybe I'll email you, since this might get a little more personal than a typical blog comment.

Thanks loads,
Sue

jacsher said...

Backagain... Hope you are feeling better along with Mum.  WE are in the midst of a tropical storm here, actually on the edge and stay online via cell.  so we have been on and off every three to five minutes.  Just wanted to say hello.  I wondered if you encountered many storms being in the North Norfolk area.  One of the worst storm I was in was in the North Atlantic just west of you.  With this storm I was just wondering.
Jack