2 minutes ago, overthepill said:

@Chippy @Luke @Bernadette @mstimc60@SarahMc I've been mostly bedbound for a little over 3 months now (Time on the med 9 weeks + Time off the med 6 weeks) and am beginning to wonder how much this prolonged bedrest is contributing to my symptoms. Any advice how how to start getting back to upright life gradually, I don't want to overdo it and cause a setback but I also don't want to just keep staying in bed and deconditioning further. Any advice is greatly appreciated!

Hi @overthepill You can start with little things like sitting by the window in your room and naming five things you see outside. Describe them in your mind in detail. If your mind wanders to negative thoughts, just bring it back to naming those five things with no judgement. From there, you can walk around your house and do the same thing. Stop in a room and name something, then move to the next room and name another till you’ve named five things. Do it at least once a day at first till you feel more comfortable moving around. Take it slow, and if you find yourself sliding into anxiety or fear, just go easy till you are more comfortable. It will come.

Edited yesterday at 01:55 AM1 day by mstimc60

3 hours ago, overthepill said:

@Chippy @Luke @Bernadette @mstimc60@SarahMc I've been mostly bedbound for a little over 3 months now (Time on the med 9 weeks + Time off the med 6 weeks) and am beginning to wonder how much this prolonged bedrest is contributing to my symptoms. Any advice how how to start getting back to upright life gradually, I don't want to overdo it and cause a setback but I also don't want to just keep staying in bed and deconditioning further. Any advice is greatly appreciated!

Hey @overthepill I really feel for you and there with you sitting right in that exact same boat being bedbound during this phase with zero energy or motivation let alone any capacity for physical activity, is exhausting!

For me, just the thought of any kind of workout feels entirely out of reach right now, like trying to move mountains when my limbs are made of lead.

If being honest, my biggest trap is fighting myself over not keeping up with my routine but I'm slowly learning that you can't out-stubborn your biology, right now, your body is quietly doing heavy lifting on the inside, redirecting every last drop of energy toward healing and clearing itself out.

What's helping me survive these heavy days is learning to radically lower the bar, instead of thinking about exercise I try to focus on micro-adjustments, doing tiny, gentle stretches right on the couch or bed, letting warm water reset my head under a shower or simply cracking open a window for fresh air and when getting up feels like too much, even finding a lightweight distraction like putting on a familiar show or a podcast makes a difference.

Please don't beat yourself up for resting. This is a temporary brutal stretch but it does pass.

Take it one hour at a time.

Edited yesterday at 05:19 AM1 day by Fullhealing

@Chippy The head pressure and discomfort can't just keep building indefinitely right? I feel like I'm going to lose my mind if these symptoms don't start decreasing in intensity soon it has felt like a gradual climb since getting off the med

55 minutes ago, overthepill said:

@Chippy The head pressure and discomfort can't just keep building indefinitely right? I feel like I'm going to lose my mind if these symptoms don't start decreasing in intensity soon it has felt like a gradual climb since getting off the med

Nothing last forever mate, the symptoms themselves are just signs of the body healing and so is the fluctuations. I wish we knew exactly how long and what pattern of symptoms this would take, but we do know if let alone and no additional substances are added in, things slowly improve over time. Many have healed before you and you can and will too.

8 minutes ago, Chippy said:

Nothing last forever mate, the symptoms themselves are just signs of the body healing and so is the fluctuations. I wish we knew exactly how long and what pattern of symptoms this would take, but we do know if let alone and no additional substances are added in, things slowly improve over time. Many have healed before you and you can and will too.

I know head pressure has been a big symptom for you, has it ever reached a point where you said if this gets any worse I won't be able to handle it?

6 minutes ago, overthepill said:

I know head pressure has been a big symptom for you, has it ever reached a point where you said if this gets any worse I won't be able to handle it?

Yeah it has been a problem to be fair. No I work very hard on not saying things like this. It doesn't help matters. If you say 'I can't handle something' then by default you can't. The reality is we can handle far far more than we think we can or should be expected to. Mindset is everything.

3 minutes ago, Chippy said:

Yeah it has been a problem to be fair. No I work very hard on not saying things like this. It doesn't help matters. If you say 'I can't handle something' then by default you can't. The reality is we can handle far far more than we think we can or should be expected to. Mindset is everything.

Have you ever had to take anything for the head stuff or you just ride it out? I'm trying so hard to keep my system medication free as to not rock the boat.

Just now, overthepill said:

Have you ever had to take anything for the head stuff or you just ride it out? I'm trying so hard to keep my system medication free as to not rock the boat.

I did at first but I think somethings set me back. So I tough it out now with coping skills. I know it seems unreasonable but it is completely possible.

@overthepill

Hello,

I had challengine headpressure and headaches for years. This is just my personal story but after 2 years of tapering through poop out and jumping to zero from too high a dose, it took about 9 months to a year for my head to feel better and another year for my CNS to relax.

Things defo got worse after I jumped to zero, but they did begin improving within a few months of the most difficult symptoms.

I endured it via faith and building a support network. I didnt thrive, but I went to work about 5 months past zero and managed.

I would encourage you to focus on the achievable and build on that. I would take baths and showers, and on a good day walk at the park. I was irritable around people so I limited exposure.

It felt unbearable on the daily, and yet I still endured. It really was just one day at a time.

At the risk of kindling I tried some of the supplements. The only thing I felt really might have helped a tiny bit was fish oil. And headache hats 👒 😅 I wore those things daily whenever I could.

I know this is trying, but it's my personal belief that given enough time, everyone recovers.