Sharing our stories. Nikki’s story.

One of my aims for Braver than I knew, is to encourage the sharing of our life stories in order to help others in similar circumstances feel less alone, and to give the rest of us a better understanding of the struggles people face.

 

So I would like to introduce Nikki and thank her for allowing me to contact her and ask her what it is like living with her condition...... 

Please  can  you  tell  us  what  your  condition is?

My condition  is  fibromyalgia  which  was  brought  on  by  the  rare  cancer  I had. The  cancer  was called  chariocarsunoma,  which  is  when  a  piece  of  placenta  is  left  in  the  womb  after  childbirth and  turns cancerous.  Until  I had  chariocarsunoma  the  doctors  were  told to  check  for  this type of  cancer, at anytime, up  to  five  years  after  childbirth. But because my children were  older  the  doctors  did  DNA tests,  on both  my girls,  and  the  cancer  had  been  lying  dormant  in  my  womb  for  twenty years.

So  I have  rewritten  the  medical  books.

 

How long have  you  had  this condition?

I have  had  chariocarsunoma  twice.  Having  thought  I  was  clear  of the  cancer  it returned and I am  now  in  long  term  remission.  I  had  this in  2005  & 2006.

The  fibromyalgia  I  have  had  for  thirteen  years,  since  my cancer.

 

Can  you  explain  what  your  body  feels  like?

My body is  in  constant  pain  day and  night.  I take  numerous  tablets  to  relieve  the  pain. However, I always  have  pain  it  just  depends  on  how much  it  hurts  as  to  how  it  interferes  with  my life. Also, by taking  strong  pain killers,  there  are  side  effects,  which  have  caused  as  much  of  a  problem as the pain does.  When the pain  is acute  I  take  morphine  which  makes  the  pain  go  away, but  also  I am  unable  to do  anything  but  stay  in  bed,  due  to  the  effects of the morphine. I also  get  fatigue, which  I  now know,  is  very  different  from  being  very  tired.  When  my fatigue  hits I need  to  go  to  sleep. I  have  even fallen  asleep  with  hot  drinks  in  my hand. I do  get  a  small  amount  of warning  but  it  can  hit  me  anytime,  anywhere. When  I go  to sleep  I  have  been  known to sleep up  to  seventeen  hours  in  one  go.  I spend  approximately  a  third  of  the  week in  bed  either  in  pain,  on  morphine  or  asleep. I am  normally  in  bed  by  eight  pm.

 

 How has your life  changed  since  diagnosis?

 My life  has  changed  in  many ways. Before my cancer  I was  working  in  management  in  social services.  I would  be  out  somewhere  most  weekends  and  out  some  evenings.  I can  no  longer work  and  I spend  most of  my  week  at  home.  I  am  unable  to  do  a  lot  of the  things I  did  before.  It is  difficult  to  plan  much  as  I don't  know, not only  from  day  to  day,   but  sometimes  from  hour  to hour  how  I will  be. I can't  do  very much physical  activity as  this  causes  pain  and  fatigue.  I have to think ahead and plan  if  I  want  to  go  somewhere  or  do  something  and  take a couple of  days  before  the  event very quietly. I  also  need  down  time  after  the  event to  recover.  This  means  if  I am  going  out  for  a day, then  I need  two  days  before  and  two  days  after,  to  go  out  for  just a  day. But  this  does  not  always work. I can  become  very  frustrated  and down at not being  able  to do  all I want to do, I get upset at letting  friends  and  family  down  when  I can't  get  out  of  bed.

 

What  treatments  have  you  tried to  self  help  your  condition? eg homeopathy, and did you gain any benefits?

I have  tried  many self -help  treatments  which  have  helped  to  varying  degrees.  The  most effective  I  have  found  is  CBD  oil, which was suggested  by my  doctor.

The  fibromyalgia  is  not  a  physical  problem.  It  is  caused  by  the  brain  telling  the  body I  am  in pain,  so  most  treatments  will  not  work.

 

What  do you most wish people understood about  your condition?

That  when  I cannot do  whatever  I  have  said  I  will  do,  it’s because  I can't,  not  that  I  don't  want  to. I hate having  to  say ‘ sorry  I can't  do  that  today’,  however,  I  have  very understanding  family and friends.  I do  need  people  to  keep  involving  me, as  I can  see  how  easy  it  would  be  to  think  that  I  don't turn  up  or that I’m too  unwell,  to  ask. If  I can  do it,  I  will  try my  best  always,  to  do  whatever  it  is.

 

How can someone  best  help  you?

 Just  keep  in  touch  with  me  and  be  there  when  I  need  someone.  This  can  be an isolating illness, with not being  able  to  get  out  of bed  or  being  asleep.

 

 Has  your  condition had  an  impact  on  your  mental  health?

 I do  get  down, rather than depressed. I  can  feel isolated and frustrated. Sometimes  I can  lose my sense  of  humour  which  is  a  sign  to  me,  that  I  need  some  help,  which  can  be  just  a  nice cup  of tea.

 

Are  there  any  positives  to  having  your  condition?

I feel  I have  become  calmer. I  also  see  how important  life  is  and to  have  the  right  people  around me, for  which  I am  grateful. I  think  before  the  cancer  I took a  lot  of  my life  for  granted. I  now appreciate  my husband,  my children,  my  family  and  friends.  I  notice  nature,  the  changing  of the trees  and  the  animals.  I  also praise  people  more.  I  feel  we  can  all  complain  very quickly  but often  don't  take  time  to  say well  done,  or to  write  a  thank  you  letter.

 

What  is  your  favourite  way to  distract  yourself?

Craft  is  my distraction. I  do  many crafts  (not  all  well).  I enjoy  knitting. At the moment I am sewing bags, but  doing  it  the  hard  way,  by making  my own  patterns.  I  want  to  start  painting again. But it’s having  time,  energy, and  being  well  enough  to  do  it  all. I also  use  humour,   as  if  all  else  in  my  body stops working,  my mouth still works.

 

And  finally, how  does  wearing  Braver  than  I  knew,  make  you  feel?

It reminds  me  that  I  have  got  this  far  in  my life.  So, if  I can  face  what  I've  been  through  already,  I can  get  through  another  day.

I also  feel  it  tells  others,  that  they  can  do it too. Whatever it means  to  them,  without  me  having  to  tell them what I’ve been through.

So  it  gives  hope  and  in  turn  a  feeling  of  not  being  alone. Even  though  each  person’s  'braver  than  I knew'  is  individual  to  them, the  message has a  common theme.


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