Archive | Uncategorized RSS feed for this section

Campaigning

13 Apr

ImageImageImageImage

Advertisements

Moving from Incapacity Benefit To Employment Support Allowance

13 Apr

I decided to do a blog to help others that will be going through this process and also others could help and advise me

National Ankylosing Spondylitis Society have published a blog on the NASS website

http://www.nass.co.uk/about-as/living-with-as/gillians-blog/

My Journey

13 Apr
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

Hello world!

13 Apr

Welcome to WordPress.com. After you read this, you should delete and write your own post, with a new title above. Or hit Add New on the left (of the admin dashboard) to start a fresh post.

Here are some suggestions for your first post.

  1. You can find new ideas for what to blog about by reading the Daily Post.
  2. Add PressThis to your browser. It creates a new blog post for you about any interesting  page you read on the web.
  3. Make some changes to this page, and then hit preview on the right. You can always preview any post or edit it before you share it to the world.