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Mental health

I am 32 years old and was diagnosed in 2021, I am still trying to process the diagnosis and trial and error medication which has left me in a debilitating condition with the pain and stiffness, I am struggling mentally because I have two young children with so much energy and I cannot match their energy and I feel like I am failing as a person and a mother, what are everyone’s experience and how did people over come it

  1. Hi i am sorry you are struggling, truly you are not alone nor are you failing ! I completely sympathise with you as I also have two children both boys which have a load of energy and some days I wish I could just take something to give me a burst of energy so I can keep up with them . I had a really difficult time with lots of flares a couple of years ago and I remembering feeling pretty low with the constant pain , fatigue and no energy but we do our best to continue on . I found taking them to parks , the swimming pool always a good go to so that I could sit on a bench or just move around in a pool while they went crazy letting off steam . I started Enbrel last year and since then have improve loads . The pain isn’t as constant and so far no big flares just my knee that niggles when I have over done it . It is difficult trying to find the right balance between being a mum , working and living with A.S , it defiantly is a roller coaster Journey ! I have found over the years that we need to take time out for us too even if just for a hour to two for some stretching , swimming , massage or what ever it is that you find helpful to relax . Seeking holistic routes I find helpful for my mental and then in return physical . Remember we didn’t ask for A.S it’s what we got dealt but you will find the right things for you that help , like just being on here to have that support from others is a great start . Wishing you well and sending hugs .

    1. Hi Dill
      I am sorry that things are hard for you at the moment. I know getting the diagnosis was the hardest for me too. I was diagnosed last year. It was a very hard year, having no energy, mostly being in bed, I was sad and anxious most of the time and I had pain all the time


      I have learned that mental difficulties just makes your walk with the disease harder.
      Find a support group and maybe think about homeopathic mood stabilizers. This worked for me.


      Know that it will take a bit of time till you come to accept this journey and even that is not easy.


      It does get better. Once you have figured out what works for you. It will become easier.


      Love and warm Huggs
      Astrid



      1. Hi! You're pretty much in the same exact situation as me. I'm a mother of 1 and 3 yo children and recently diagnosed with AS. The whole first year of life of my youngest, I suffered from pain. I'm still in pain and in the early stages of looking for medication that works for me. It's frustrating, but I'm trying to find comfort in the fact that at least I now know what's going on and I can get help. I feel overwhelmed most of the time and try to do my best as a mother. It's not easy. Before my diagnosis I suffered from severe depression and anxiety, and still to this day my mental health is not where I would like it to be. So you're not alone! I hear you and somewhat know what you're going through. I try to think that due to my illness I can teach my children to be kind and helpful to others. That we are all equal despite the fact that some of us suffer from illness and pain. That we should not give up even when life gets almost too heavy to bear. You're an inspiration to your children and no one could be a better mom to them. Hang in there fellow mama, it'll get better for the both of us some day!

        1. hi, first of all thank you for sharing this with us. Just know that you are not alone. You also need to know that you are not failing as a person or as a mother. Your going through a lot and you are doing great.


          I’ve been diagnosed since 2020, it really does impact your mental health, especially when you are trialing what works for you. Being honest it’s only in the past 6-8 months that I’m back to myself.


          It took a lot of trial and error of medication, but I finally found what works for me!


          May I ask what you have tried?


          Please don’t be so hard on yourself, I know it’s easier said than done but you need to be mindful of your mental health. Especially when it comes to AS, as being stressed may cause you to flare more.


          You will find what works for you! Unfortunately, it just takes time.


          My inbox is always open if you need to talk.


          Ali (Team Member)

          1. Dear Ali, I tried adalimumab and it took 8 months for me to feel back to normal then I got COVID had to stop the injections and the pain and stiffness came back with sharp shooting pains, they have switched me over to eternacept with etoricoxib and amitriptiline, the amitriptiline helped with the sharp shooting pains. Currently I have had two injections of the eternacept and I had to have a month period where I couldn’t take anything for the medication transition period. I just feel like I’m in so much pain and so stiff I can barely walk and I’m 32 walking like an 80 year old, it’s humiliating to walk somewhere and walk the way I walk, I’m just really down and I think everything’s getting to me

          2. this saddens me bc im relating heavily . I was always about being fit and limber , hiking and etc ; now im almost a cripple . I can hardly put on my shoes , walk normally or get in my car . I dont have the answers but i feel your pain , literally . And it sucks . It must be a TOUGH road with little ones . I can barely take care of me . Is there anyone you can lean on ? Mom , sister , gf , kids dad ? I wish i could stop you from beating yourself up; or worrying if your walk is "humiliating " . One thing i did was get good and angry , and harness that into action . I was like "damn you , im not letting you ruin my life " . Then i applied myself like crazy to seeing any dr , trying any med , getting any test and resesrching all types of treatments/supps that might help me . Ive become a crusader , and i'd rather be fighting mad and resist this thing than lay down and cry . But thats my trip . God bless and heal you . Consider ldn . I had to give it 2 tries , but im feeling genuine relief now .

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