A.S. Face 0521: Terry Byrne

My name is Terry Byrne and I live on the west coast of Ireland in the county of Clare.  I was diagnosed with Ankylosing Spondylitis six years ago at the age of forty, even though I knew something was very wrong for years prior.  I have had many forms of medication including Embrel, Humira and Remicade, all of these drugs worked for very short periods of time, but soon I was back to the all too familiar feelings of constant pain and extreme fatigue. When I was receiving  Remicade I also suffered from many reoccurring infections and viruses all of which reduced significantly when I ceased taking the drug.

My life is one constant battle with pain, emotional stress, depression, fatigue and just trying to cope with each day.  There are good days and really bad days and days I really wish I could hid away from the world forever. Friends and people I meet on a day to day basis really do not understand what is going on as I can look really well on the outside and I find it very frustrating and exhausting trying to explain over and over again that it’s not just a simple back pain that will go away, and as a result I do not talk about it much, and a lot of the time keep away from friends and some family members.

I am however one of the lucky ones to have a wonderfully supportive wife without whom live would be an entirely different picture.  I do not look too far into the future and take one day at a time as that’s all any of us can do.

Hope you are having a good day today and I wish you healing love on your Birthday.

Thanking you

Regards

Terry Byrne

Ireland


11 Responses to “A.S. Face 0521: Terry Byrne”

  1. Terry: I was diagnosed a year ago at age 49, and am about to start taking Enbrel, as Methotrexate seems to have stopped working. I was sorry to hear that the biologics did not work for you. This disease seems to have episodes, which I try to control with pain medications, but I cannot do anything to escape this severe fatigue! I feel your pain in that people do not understand, but the people in this forum certainly DO!!! So glad you have a supportive spouse, as I do! Keep on keeping on, Terry, one day at a time!!!
    Stephania
    Face #445

  2. Dear Terry,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  3. Terry, there is an open letter on the Spondylitis Association of America website. Someone asked how to explain this disease to friends and family and this letter is perfect for that. You might check it out, I found it helpful, in fact, after reading it, my husband finally understood. I feel as you do on most days. You aren’t alone in this. Also, Sara Frankel’s Blog spot, has a beautiful passage, look for “A Part of a Whole”. It describes so perfectly what alot of us go through daily. Even though she is no longer with us, I believe you can still find her writings on line. All the best to you, Suzanne

  4. Thanks Suzanne for your comments and support, I will check out what you suggested. Its such a tough illness and very hard to live with I appreciate your kind words and wish you all the best in this tough fight……:-)

  5. Thanks Suzanne for you kind words. I will check out the above suggestions, Its such a tough and debilitating illness I appreciate your support and wish you all the best in your fight …Terry 🙂

  6. Thanks Stephanie ….. We need to support each other in this difficult battle

  7. Thanks Cookie for posting my story really appreciated, makes me feel I am not alone in this fight
    Regards Terry

  8. Hi im inquireing for my husband.we live in ireland and was woundering would u know the name of a good rheumatolgy in ireland for A.S. As there is very little information on it .thanks

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