Its been a minute

[hope23]

Its been a while since ive been on here, its been an exceedingly rough 9months, from finding a medication that made a world of difference to the pain from ankylosing spondilitis(as is very common when you have one chronic condition, you often have multiple, my lucky dip draw is Fibromyalgia, CFS, Ehlers Danlos(with active frequent dislocations) and ankylosing spondilitis), and learning about how different life is on immune suppressants but also how different it is when your pain and symptoms are so much less. To stopping that medication in order to have my ankle operated on, restarting the medication once given the all clear to, to the heartbreaking discovery that that medication is now not going to work at all unfortunately with immune suppressant and biologics that is the risk you run when you stop them and restart them. Fast forward and now i have started a different immune suppressant which has caused the worst flare up (of everything) ive had in a bloody long time. This is a common occurrence when you start it until it starts working.
Ive done a lot of my health journey over the last 8 years on my own, i am now extremely lucky and greatful to have found a partner who understands(without having lived his own experiences of similar) and who without question props me up, picks up the slack when i cant. Despite being crook as hell, in a lot of pain and running on empty energywise i am greatful to not be doing it alone.

I try to share my journey as openly as i can, but when im extremely crook and hunker in on myself, withdraw from anything over and above necessities and just try to get through it.

 

[SweetWithSour]

am now extremely lucky and greatful to have found a partner who understands(without having lived his own experiences of similar) and who without question props me up, picks up the slack when i cant. Despite being crook as hell, in a lot of pain and running on empty energywise i am greatful to not be doing it alone.

This is fantastic and such a game changer! I'm so glad you have someone in your life, a true partner! This is a very rare find. It goes to show what a gem you are

when im extremely crook and hunker in on myself, withdraw from anything over and above necessities and just try to get through it.

This is very common to withdraw into yourself when you need to. Don't feel guilty about this. It is all part of the journey and necessary when healing yourself. Please don't forget to still do things that make you happy during this time too. I know sometimes when I withdraw I think it's part of the "payment" of being in pain and withdrawal from life. I've learned the hard way that things that bring me joy are still needed, and very important, to help me in my healing process. I also felt like I needed to justify my doing things that bring me joy at this time. It took me a while to learn that there is no need for this justification to myself or others. I didn't need to punish myself and live in suffering while withdrawal from others. The good things are a strong part of healing!

You have had A LOT going on with medication changes, surgery, more medication changes, and finding past medications that use to work no longer are working for you. Such a challenge physically on your body and emotionally. Continue to be loving and kind to yourself. Lean on your partner, it's ok. Find little things you can do for your partner to show your live and gratitude. You can get creative. Special things don't need to take a lot of energy or put you in more pain. When you can tap into things they enjoy they can feel loved and like you really took the time to know them and personalize it to to them.

Hang in there! Be kind, compassionate, loving, and give yourself the grace that you would extend to others!

Sending you warm gentle hugs and prayers that you find the right combination that gets you feeling better