Help

Fizz14,
I would encourage you to go see your doctor and see if you can get a change in the medication you are taking. Life is difficult anyway, but hurting the way you do and being a parent is really over the top. Flares suck! Sendiing thoughts and prayers!
LisaWY

Hi



I read everything you wrote and I can relate to so much you are feeling and going through. It can be hard when having kids and trying to manage taking care of yourself at the same time. I can relate to that, I have 3 kids and feel the same every day. Push through every day through work, cleaning, and sometimes it can be hard to remind ourself that we need also the selfcare especially the way we feel every day.


What helps me is many breaks throughout the day. If i know my body needs the rest I have learned to give it to it. I know sometimes it can be hard because life can make it hard to do that. Especially as a working mom with kids. Adding that pain of this disease is the cherry on top that makes it harder. I use to be afraid to call in sick to work, but now if i see that I am not able and see that it will get more worse if I do push, I have l learned that it's okay to call in sick. Lucky I have finally opened up at work and let them know lately I been pushing through a flare and if I call in sick it's cause I really am not able. I know not many are lucky in this aspect, but finally I have found a supervisor that understands.


You are doing the best you can. You are a warrior. I am sending you strength your way and I hope you can get some better days come along.


Warmly hugs,


Nicky (Team Member)

Hello - It's understandable to feel overwhelmed and frustrated by the lack of relief despite your efforts. I'm terribly sorry to hear about the severity and persistence of your flare though undergoing treatment. Dealing with such a wide range of symptoms affecting various parts of your body. Moving forward daily is incredibly challenging both physically and emotionally. If your biological medication does not help and you've been on it a while, it may be time to head to your treating physician and discuss a new or different treatment. There are quite a few and any combination of them could really be of benefit. It took me quite a while (4-5 years) to find the right medication/biological treatment that got me out of the horrendous flare I was in. You should find relief when taking these medications. If you don't it could be an ineffective or suboptimal treatment. When was the last time you saw your practitioner?


Chronic conditions can be incredibly unpredictable and exhausting, and it's not uncommon to feel like you're losing hope at times. Putting on a brave face and pretending everything is okay when you're experiencing such profound pain can be emotionally exhausting. It's okay to acknowledge the difficulty of your situation and to give yourself permission to express how you're truly feeling.

Finding ways to cope with the pain, both physically and emotionally, is vital. It's positive to hear that you're prioritizing exercise by swimming every morning, even though it may be difficult. I went through years of flare trying this and that exercise but only improved through a combination of exercise, medication, therapeutic treatments, and support. Here's a link that may help - https://axialspondyloarthritis.net/treatment


Please understand that you are not alone. This is a major concern for those suffering through this journey. Having to work a full week and deal with this kind of pain and discomfort is truly defeating. I send you strength and hope to support you through this tough time. Please keep us updated as to your health. If you have questions, please do not hesitate to post - a member will be available to listen.


Thoughtfully, Rebecca (team member)