Monday, 24 June 2013

Symptoms

These have been my symptoms.  They have been gathering over time, and became focussed at Easter this year.  I know now that I have been suffering from the tumour growth at least since I joined Chorlton High School, because I can see a pattern (NOW that I have a diagnosis).

Before Easter:  Repeated spells of catching a vomiting bug.  One or two days off vomiting all day ...
Tiredness and fatigue - I thought I wasn't coping with the workload and family life.
Leading to being in bed every night immediately after getting girls to bed.
I am losing my ability to remember names or arrangements.
I had one incident of eye sight distortion that lead to vomiting.  I begin using reading glasses.
I lose my social life, my fitness activities are reducing.  I have been through thinking different diagnosis eg
  • I am depressed
  • I have started senility
  • I cannot cope with a job as a teacher (Contrary to my aim to become a school leader)
I change schools and go to work as a Teaching Assistant.  I am optimistic that I will adjust to a job which is focussed on smaller groups of children, in a really positive school.  I continue to be exhausted.

I continue to live a full life, but I am always exhausted, and cannot ever get enough sleep.  I make it away for weekends in London and other activities.

At Easter, everything comes to a head.  I have been have little headaches.  Short headaches - just a few minutes, but blinding.  I can do nothing while I have the headache.  It is a pain that I have never had before.  It is frightening and a worry that I will pass out.  I begin asking Dave to keep his phone on over night, so that I could ring him if I was in trouble.  We go to Berlin for a few days, and I have headaches in Berlin.  We had a good time, but it is behind a growing feeling of being uncomfortable.

On our return, I head off on a planned drive to Bristol.  This now appears completely crazy, but I went to Bristol, feeling ill, and drove home again.  While in Bristol, I could not drive and let me sister drive me.  On return to Manchester, I had another sickness bug and was unable to start school at the start of term. 

From here on, I continue to try to go to work.  I still think that I am depressed.  I am getting over working so hard in old school, and feel like everything is crashing in on me at once.  At school, I am incapacitated by the headaches and being sent home.  Over an over again.  I decide to take time off sick to recover.  My GP thinks I am depressed and has diagnosed anti-depressants.  I start taking these.  I am promised that they solve headache problems.  The headaches continue.  Dr Sabeti sends me to MRI A&E, who do a lot of physical tests, but send me home to rest.  A discussion with consultant does not give me an MRI scan.

I take Martha and Katy to Dave's Mums by train because I can't risk driving.  It was an awful journey, because I am feeling ill, Katy is injured too.  The short walk from station to her house feels like several miles.  Once there, I get double vision.  This is very dramatic, and uncomfortable.  Dave calls and offers to collect me, and I say YES.  He knows I feel very ill.  The next day, I get a taxi to MRI A&E (again), and again I was sent home to rest.

I cannot describe what it is like going to see a doctor for help, who does not do what you want, but you cannot tell them because you are not functioning properly.  I would simply sit, and try not to lie down, try and listen and say yes or no.  I did not have the resolve to say that I needed more.  My advice to anyone else is always go with someone that you know, so that they can stick up for you.  I needed someone with me to say "GIVE HER A SCAN".

Back to my GP with my mum supporting me.  Dr Sabeti sends me to the eye hospital.  I am incredibly ill, I have been vomiting for a few days, and I vomit on the floor in the hospital.  Again, I cannot express myself - I am constantly looking for somewhere to lie down.  I get given prism glasses, see a doctor and sent home to wait for appointment with consultant.  This comes four weeks later. 

In between all this I have been back to GP a number of times.  A cover GP gives me a sick note until September.  My GP keeps giving me anti depressants and is irritated that I keep coming to back.  I want her to know how ill I feel, but it isn't heard.

I am unable to walk to the end of my street.  I can start the journey, but it would then feel like my head was put into a kaleidoscope, and everything rotated (quickly).  I would lose my coordination and find it very difficult to walk.  I stop trying. 

Twice I found myself with pins and needles in my lips and my hands.  Martha had to lift me into to the house from a chair in front of the house.  I have had a number of nights with either Martha or Katy helping me with headache pain.  I would cry out in agony, and they would tell me it will be alright.

Anna Friedenthal took me to my GP again, and this was another depression disaster.  Anna asked for the eye hospital appointment to be brought forward, and this was rejected.  I left with blood test results that showed I could have an allergy.  I am thinking that maybe I was allergic to something...

So I end up at the eye hospital, and you already have that story.

The amusing part of this story is that I never believed that I was ill.  Also, many friends did not clock that I was poorly, because if you aren't present, they think you are busy.  Martha and Katy's lives were managed on calls to ask friends to bring them home.  They went to school with Martine, Izzy and Jazz.  Dave was taking them to clubs and activities.

I missed so many events that I usually love, and I am looking forward so much to becoming a full member of the community again.  I want to see Katy's assembly, I want to be a sports day, at the school fair, at open evening;  I want to see Martha perform in Helen O'Grady event.  I missed Macbeth...  I have missed so much.  I will be back!!!

Welcome to the family Cammy Koala, Baldy Kiwi and Shirley Bear























This is a picture of us with our new teddies. Sasha Friedenthall and Ella McAffer brought us a teddy each and best wishes cards.  We all have a teddy to look after, talk to and to look after us.  We named them using the Blue Peter game (putting lots of names in the middle). Martha called hers Koala,  Katy's is Baldy Kiwi and guess what!  Mine is Shirley.  She can become Valentine after the extraction ...

Thanks to Anna and Vicky for a wonderful event.  We all felt very warm and happy.

Martha and Katy 'GTG'


This is Martha and Katy setting up their mobile phones.  They were really excited to have them.





Book of laughs


Hello all, this is an email from Bev, my sister.  Your comments help me feel positive, and I feel so proud that you all care so much.


Bev's email 

Family and friends of Sarah,
My name is Beverley, younger sister of Sarah, I would like your help........

I am looking to compile a reading book for Sarah, of all the times we have laughed, joked, and celebrated success. Would you kindly email your stories to me and add a photo if you like. They can be as short or as long as necessary.
This book can be read to Sarah in quiet moments or when Sarah may be in need of a lift or a smile.
Please feel to pass this message on.

Love and blessing to you all,

Beverley xxx

Date for operation Wednesday 26th June at 7am

I will post more news soon about it.

lots of love

Sarah xxx