I don’t like my new baseline 

I currently don’t like my new baseline. I’m pretty much sleeping my life away at the moment. Or I feel so hazy I have no recollection of what I’ve actually done when I’m awake. We’re nearly at the end of February and I can’t really tell you what I’ve done for the past two months since new year. 

I’ve had to reduce my baseline because my doctors are worried about the serious consequences of taking steroids long term and mine was higher than the average person’s (fair enough). My argument is what’s the point in safeguarding against brittle bones and cardiac problems when I’m 60, if I haven’t been able to get out of bed for 30 years? There has to be a balance between quality of life and quantity of life, and right now my quality of life is pretty non existent. 

I don’t like my new, lower baseline because I already had a poor quality of life on my previous one. Now I feel like I have even less quality of life. I’m asleep a lot of the day and not a lot at night*. Standing for a few minutes at a time makes me sweaty and shaky and need to sit or lie down. I feel really depressed because all of my energy is going into things necessary to keep alive so there’s none left for making my mood feel better or to do things to make my mood better. I’m really paranoid and anxious about things I know aren’t problems but I can’t shake it. I don’t sleep for longer than 40 minutes at a time at night (although earlier in the week it was 20, so some improvement). Everything hurts and my skin is really itchy. I’ve got my stomach ache and a pressure headache a lot. I’m so tired I don’t know what to do with myself so just cry when I hit exhaustion point. My dizziness has hit a new low because I feel like I’m on a boat and the ground comes up towards me now, which it never used to do. But because I’m eating more to try to stop myself from being as dizzy, I’m putting on weight again, which is a rant for another day. 

You might be thinking ‘well she’s still writing blogs and knitting’. I can only knit in short bursts and not around tablet times. So I knit until just before I start to get hot and sweaty/really dizzy then lie down for 20 minutes to recover or go to sleep. Then repeat. I blog on my phone while lying down in bed when I’m awake for ages at night because I feel really nauseous and anxious, because it distracts me, or I do it when I’m lying in bed first thing in the morning when it takes me an hour to be able to get out of bed. If I didn’t have these things to do then I don’t know how I’d cope with the rest of it! 

While it’s a good thing to be on a lower baseline long term, if I can stick to it, it’s really pretty terrible right now. It’s only been 10 days, but 10 days has felt like a long time when it’s really hard. 

* I don’t have an issue falling asleep and I’m not getting ‘too much sleep’ in the day which is why I’m not sleeping at night. It’s a bit complicated so I left it out, but it’s not to do with poor routine 🙂 


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