@Elliepapillon 

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Elliepapillon

Emotional/hormonal rollercoaster?

I'm almost 4 months into Tysabri infusions. And have noticed there is a definite drop off or "crap gap" of about 10 days prior to each infusion. Where all my symptoms seem to flare up and most prominently due to the point in my cycle I started the infusions, this drop hits at just around the same point that I deal with PMDD (pre menstrual disphoric disorder) previous to being on Tysabri this phase woudo consist of just a few days of hellish mood swings and lots of upset but I would get my period and they'd stop... My usual upbeat strong self would return and I'd be getting my infusion and within a day or so I'd be back to feeling myself fully. But this is now the third time I've noticed that not only is the Pmdd tearing its head sooner, it is staying throughout my period... And I am really noticing a massive increase of intrusive thoughts happening almost daily during this 10days. Things like wanting to not be here (not suicidal just thoughts of not being here... Which I guess to anyone who hasn't ever really been suicidal it must sound like I am. I am NOT I just float off into what if scenarios, spacing out, disassociating, imagining a different life. I distance myself from my friends, my family, my husband. I'm autistic and adhd so those are both playing an extra part to all of this. But essentially it feels like a total melting pot of disfunction right now. The emotional toll of the past year (and some) seem to be hitting me like a wave at times. I feel guilty for being this volatile, and fragile around those I love the most. But at the same time I feel a deep rage that I'm even left to be feeling these things... I have so very much to be thankful for in my life. And some really amazing people too. I just don't really know how to reconcile that after years of battling with my mental health, having gotten off countless horrible antidepressants and anti anxiety meds and found fairly good coping mechanisms for the hormonal issues, I'm now feeling very much at the mercy of my MS when it comes to how I see life, myself, my loved ones and my situation. No one close to me really understands this deeply enough. They see me doing great because they see me WHEN I feel great. They do not see all the times I'm crying, or staring into space, or shouting at my husband or son, or feeling so grossly overwhelmed by it all that I find ways to numb myself from feeling ANYTHING other than bliss & joy. I know this isn't a sustainable way to be coping. But I don't know what else to do? Life's mental load has been too much to bare for years as it is... But right now I feel like I'm running with a check engine warning light on and now it's basically flashing at me daily. Can anyone relate or perhaps suggest anything that might help? The thing is I know what I NEED to do... Get back into moving my body more, physio, yoga, dance. I need to create more, photography, painting, writing, crafting. I need to find a way to have more time alone away from being a mother and a wife. To return to spritiual practices that brought me a deep amount of peace. But ALL of those things require having the energy, focus and capacity to make them happen. There's always like 10 things in front of the things I actually want/need to do which leaves me either exhausted when I do the things to get to "the thing" or paralysed and unable to face any of it because I already feel awful and I know what will happen if I do. No spoons are ever left for the things I love the most 😩
@whisperingLOUD

When did you begin to feel tysabri was helping?

@whisperingLOUD

I am low on the autism spectrum but still shows up, and an extremely depressed bi-polar. Ms is the only thing I've agreed to take meds for. All my kids are grown, and have 2 grandchildren now. I'm happy to be on the floor with the crawling guy. This is extremely frustrating. I've been training my mind all my life to adjust to my mental status, but ms isn't as easy as anything