A.S. Face 1042: Barbara

Face 1042Barbara

My name is Barbara and I am going to be 25 years old in two weeks. I have two beautiful children a boy named Blazej who is six and a girl Izabella she is four. I’ve been diagnosed with AS a year and a half ago.

Before the pain I was full of life, I had friends, goals, plans. I couldn’t stay home for longer than a few hours. I was running, playing volleyball. I was laughing so much, everything was bringing me enjoyment. When the pain started I was blaming it on heavy lifting, as a kid I had to do a quiet a lot of it.  whilst being pregnant with my son, my gp told me that pain in the back is normal. After that I didn’t have much time to think about my pain , I had a newborn and I had to focus on him,  second pregnancy my pain started to be worse, but again it was explained to me as something normal – I felt those looks on me… no I wasn’t exaggerating, it was so painful. I came to the UK whilst I was 6 months pregnant, after giving a birth to my beautiful daughter, the pain started to be worse. There was days when I was crying and begging for some medications because I couldn’t cope with it any more. But again – its was “normal” after givin a birth. Why then every inch of my body was screaming : its not normal! Something is wrong!?

In two years time I have seen so many different GP’s. I’ve heard that my pain was usual. That its because of my pregnancies and probably worse because of my periods. I heard that I should take a paracetamol and there is nothing they can do for me. I didn’t have much fight in me left. I wanted to give up and stop going to GP’s. What was the point? I’ve started to believe that I am exaggerating. I didn’t want to feel those looks on me again.

My partner didn’t gave up…. He believed me and was my rock.  He was keep saying: – I’ve seen you in many kinds of pain, you have never cryeid, complained or stayed in bed, no matter what was wrong with you. Right now you are crying and you can’t get up. There is something wrong, no matter what they say.

He was taking me to one appointment after another.  He was massaging my back when I couldn’t sleep, taking my kids to school.

After 2 years of going back to my doctors I’ve meet a new one. I was crying when I was explaining to him what I went thorough for the past few years. He looked at me , refered me to the rheumatology department, send me for MRI scan. I don’t know where I would be now if he didn’t take me seriously back then. Few months after I was diagnosed. AS

The first thIng I’ve done when I came home was looking for some kind of informations…After finishing reading it I was shaking : NOT CUREABLE RARE

I wasn’t sure if I’ve prefered not knowing what’s wrong with me….

How am I going to be able to be a mum with this? Why did it happened to me?

I had horrible thoughts, I didn’t want to spend the rest of my life with this pain. It was unfair.

I’ve changed, my pain changed me… The fact that my little boy is coming back from school, asking me every day how I am feeling, is breaking my heart.

The fact that every time when somebody asked me what’s wrong with you? I am saying I have AS and they don’t know what is that , is upsetting.

I am 25 is should : LAUGH GOING OUT WITH MY FRIENDS ENJOYING SPENDING TIME WITH MY FAMILY BE ABLE TO GET UP FROM THE BED TAKE THE MOST OUT OF MY LIFE BE ABLE TO WORK

Instead I am spending my life managing my pain, taking variety of medications, which are not helping me and explaining people what AS is… I’ve stopped talking to my friends about my pain, I’ve stopped talking to my partner about my pain. I am slowly stoping answering to the question : How are you?

Because all I want to do is scream : I am in pain! Day after day after day! Doesn’t matter if you ask me tomorrow or the day after tomorrow,  I will still be in that stupid, exhausting pain! So stop!

I miss the old me… But most of all I miss the fact that I could be an amazing mummy if I wouldn’t be hold back by pain. Yes, I do my best. Yes, my best is more than enough for my kids, but still if not AS I could be so much more for them…..

That’s my story… Which doesn’t have a happy ending yet. Who knows maybe in a years to come there will be a cure?

Wales, United Kingdom


7 Responses to “A.S. Face 1042: Barbara”

  1. Dear Barbara,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Dear Barbara – I too have AS. I’m now 77 years old, and learned to manage pain with the help of non-steroid meds. Regular pain med don’t do anything, you have to minimize the inflamation. One good thing is that they told me when I got into my 60’s, I would have remission and I do. Remember, get a good doctor, and take the NSAIDS as recommended

  3. I am so sorry you are in so much pain. I amdoing remicade and it really helps for me. I get very fustrated with people too thinking that just because I look healthy I feel like crap most days. I have three kids and work full time and sometimes feel like it is too much! Other days I feel great! Who can figure? I will hope you find some relief soon and have more good days than bad. Best of luck!!

  4. Keeping hoping and trying Barbara. Pain meds can help, but there are treatments that improve the cause of pain. Ask your rheumatologist for better medicine, or maybe a better rheumatologist.

  5. You’ll be a fine mom Barbara….I know a special AS’er who raised three cool kids throughout her AS journey. They turned out fine. SOoooo don’t feel guilty about it. Guilt is only for something wrong we did that we had control over. Guilt is NOT for something we have no control over. It might be frustrating…but having AS is not something you should feel guilty over.

    The frustration of AS is huge. The only solution for frustration is acceptance. Accept that you won’t be able to do the things you used too. That doesn’t mean giving up or throwing in the towel…that just means giving up the frustration. You shouldn’t have to mentally beat yourself up for something you had no control over. It’s bad enough having the physical pain…but don’t add to it with frustration. Don’t give AS the satisfaction.

    You’ll do fine in life Barbara. Just like the “other” senses of a blind person become more sensitive to compensate for lack of sight…you’ll find other activities and hobbies that will bring you Joy. God always leaves us other options. When one door is closed…another will open.

  6. Basia napisz do mnie brat Robert to mój email durrobert35@yahoo.co.uk ,,, chce ciebie usłyszeć

  7. Hi Barbara, Thank you for sharing your story. Yes, we need a cure and we wont stop looking until we get one! In the meantime, chances are good that you will find a treatment plan that helps. It’s so frustrating how long it takes us to get dx and get on a plan that works. There is a good association for AS in the UK, http://www.nass.co.uk . If you are anything like me, you will have times in your life when the pain & complications are bad and seemingly never ending. I have had lots of periods when the pain and symptoms are very manageable and life is great. Sending healing prayers to you and happiness to your family. I’m #1,001. To Peace, Rich

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