A.S. Face 0208: Gillian Eames

Hello My name is Gillian Eames and l am 59, l live in Bromley Kent in the  United Kingdom.
l have two sons Mark who is 36 and Lee who is 33.
l started to get pain and stiffness in my lower back and neck in my early 20’s. Then soon after my youngest son was born in 1978 it was getting worse
Over the next few years l was constantly at my GP’s surgery complaining of this unbearable pain and terrible fatigue l was feeling. He was in his early 30’s and not long out of medical school , so looking back now how come he did not suspect Ankylosing Spondylitis as l had all the classic symptoms. Each time l visited him he would write me out a certificate to stay home from work and tell me to have had bed rest. l would tell him that resting in bed made my pain and stiffness worse, also that l knew my own body and knew something was seriously wrong with me . He eventually told me it was all in my head and there was nothing wrong with me and l needed to see a psychiatrist.
l think he come to the above conclusion after my neck was put into a collar and l was given traction on my back he did not believe me when l said it had made my pain worse and l was very very depressed because l was not sleeping because of pain and l thought l had cancer of the spine as l was losing so much weight.
l started to question myself and thought maybe he was right it was all in my head and the back pain was due to my life style as l was  raising two sons alone as my marriage had broken down and l was working part-time.
He refused to treat me anymore and l had the ordeal of finding another Doctor  (which was not easy) l was taken on a 6 months trial basis and this Doctor continued to be my Doctor for the next 25 years till he retired last year in 2011.
When my ex husband used to come and pick my sons up he would say ”Gill stand up straight you are stooped over ”. So my posture was changing and l was in unbearable pain by this time and was only getting about 2  hours sleep at night. l had to rely on my ex husband to help me with raising my sons as l was in no fit state to do this alone. At times l felt like taking the pain killers and other drugs for depression l had been given to end this pain. But that would have been a selfish thing to do as my pain would have been over but l would have caused my son;s a life time of pain.
My new Doctor listened to me and sent me to have x-rays and a blood test and the result came back that l had Ankylosing Spondylitis and l was Hla B27 positive . l was scared as l had never heard of Ankylosing Spondylitis but l was also relieved to have a diagnosis and to know it was not all in my head.
l had to wait 3 months to be seen by a Rheumatologist at my local hospital and was left to get on with my life living in constant pain, l was working at a private hospital but had been off sick for a few months and it was through a pharmacist there that l was put in touch with a Rheumatologist that looked after me to the highest standards for over 25 years ,but sadly like my family doctor he also retired last year 2011. He refered me to the Royal National Hospital For Rheumatic Diseases in Bath and they have also looked after me for 15 years to the highest standards. l am fortunate enough to attend the Bath AS courses at the centre of excellence at Bath   http://www.rnhrd.nhs.uk/page/64.
l was taking Phenylbutozone and Sulphazaline and was worried about what effect they would have on my stomach.
Through being treated at Bath l was asked if l would like to do clinical drug trial for Anti-Tnf as l reached the criteria to take part in this trial , l will put a link for you to read the rest of this next chapter for yourselves,  http://www.newsshopper.co.uk/news/1691932.denial_of_wonder_drug_could_leave_mother_suicidal/
In 2009 l had major spinal correction surgery because l had great difficulty in holding my head up and my quality of life and mobility was going down hill fast.
The result of the surgery has made a huge difference to my quality of life and my mobility and l can cope with what pain and discomfort i have living with this chronic condition.
My youngest son had a car crash when he was 18 and the tests come back that he is also Hla B27 but so far he has no signs of having AS but he has inflammation of the bowels. My eldest son has no signs of having AS.
It is so important to me that the younger generation get early diagnosis and the best treatments possible for them to live as normal life as possible .
My biggest blow was when l was medically retired from work in 1999 .
l campaign and try to support people with AS and find this is rewarding when you can help others .
You may find the link below very useful
l have met many fellow Ankylosing Spondylitis friends worldwide through Face Book and am happy that we can all support each other the best we can as it is only us with AS that know what we go through .
Gillian Eames
Bromley Kent United Kingdom

13 Responses to “A.S. Face 0208: Gillian Eames”

  1. I can relate to your story. Although it is scary when you first hear Ankylosing Spondylitis, you also feel somewhat relieved knowing that there IS something going on inside and you AREN’T imagining it. At least that is how I felt when I found out. Thank you for sharing. ((hugs))

  2. Dear Gillian,
    Thank you for sharing your story with us. I think when I say this I speak for a lot of people, you have done such and amazing job in raising awareness for Ankylosing Spondylitis not only on your side of the pond but on ours as well.
    Wishing you the best always.
    Sincerely Cookie

  3. Cooikie sorry it has taken me so long to do this for you
    You are doing a grand job

    • Dear Gillian,
      Thank you for the honor of being a part of this. Not sure when you would find the time to do this, with all that you do! Keep up the wonderful job you do. Thank you so much for your kind words.
      Blessings
      Sincerely Cookie

  4. Gillian you are truly a hero… with a disease so difficult and debilitating you kept going you kept fighting, you keep trying to raise awareness! Thank you for sharing your story with us. ❤

  5. what an awesome compliment coming from Gillian!!! Gillian has been fighting for ASers rights for years now and doesnt take NO for an answer.. She was one of the brave ones who was a gineapig for the TNFs that help so many of us and wouldnt be available had people like Gilliand didnt do the test studies for all those years putting her own life at risk!!! thank you Gillian, I wouldnt be walking today had you not been there first!!!! and thank you Cookie for bringing us all together… you are both incredible ladies and its nice to see you are coming together in this fight to get AS out there!!!! Cookie in USA and Gillian in Europe.. I hope to intorduce you both to Sigfried soon from Switzerland… Cookie is gonna make Faces international… all languages welcome and have a translation program for those who want to try and use it.. just so everyone of every race and language HAS A FACE xoxoxoxox

    • Thank you so much Sally. I take every kind word and compliment deep inside my heart for they all mean the world to me. I can’t wait to start adding the faces in their own native languages. I have been emailing and asking people to send it in their own languages also. I think it will be amazing and make the project complete. Thank you all for helping us make Ankylosing Spondylitis a household name.

      Sincerely Cookie

  6. Thank you Gillian…Peace – Love & Joy vibes your way always.
    Highest regards,
    Jim

  7. Thank you all for your comments. We all do our bit by raising awareness of Ankylosing Spondylitis.
    We all support each other the best we can worldwide.
    Cookie you should be so proud of what you are doing as Faces of Ankylosing Spondylitis is certainly raising the profile of AS worldwide.
    Well done Cookie

    Gillian

  8. Cookie thank you so much for my Wrist band hope you liked my photo of my cat wearing it with pride xx

  9. This woman is amazing, considering her condition she has the greatest personality, the best sense of humour ever and a very friendly person. She has so many problems to overcome but always puts others first.
    I am proud to be your friend Gill and send lots of love xx

  10. http://www.nass.co.uk/sign-up-for-change

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