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
I feel like my body betrays me, I try to stay active, go to pilates once a week mostly for stretching and range of motion. But sometimes it feels like I am exhausted for days.
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I hear your frustration it's not easy. Please know you are not alone.
I certainly commend you on your efforts to include stretching/movement into your weekly routine. Take care, Doreen (Team Member)
, I am just logging onto this forum in a very long time and I see your post and it absolutely spoke to me. THIS is what I am going through BIG TIME, and I am a stay-at-home dad with two very small children. The guilt and discouragement is eating me alive and the flare-ups are taking me down quick. This thread is from last year, but I am going to read through and I am hoping to engage in what has been helping you in the last year.
Hello! Welcome back. Many here understand this. It’s completely natural to feel overwhelmed and to manage both the physical and emotional impacts of your diagnosis. I hope you can put the guilt aside and your discouragement decreases as you begin to give yourself the care you need mentally and physically. Having spondyloarthritis is difficult in and of itself. Caring for young children 24/7 can make it seem impossible to make it through the day.
Some suggestions I've noted on our site to help parents manage while caring for young children include the children in activities making it a game. Also, by showing them you are taking care of yourself, your children see that you are prioritizing self-care, compassion, and resilience. Consider exercises that can be done with your children, turning physical activity into a bonding time. Take a moment to breathe deeply and teach the children quiet time. I wanted to leave a link or two to articles that may help.
https://ankylosingspondylitisnews.com/2022/11/07/we-aim-be-positive-role-models-parent-as/
https://creakyjoints.org/lifestyle/parenting-with-arthritis-young-kids-tips/
Have you spoken with your physician about controlling your flares a bit better? Maybe there is something better to decrease your pain, fatigue, and exhaustion better.
Hope you are managing a bit better today. Sending strength and courage your way - Rebecca (team member)
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 . 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
