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I have to admit, I'm struggling. Physically. With getting out of bed, with cycling to the station, with working a full day (note: I work 9:30-4:30 and I write or proofread or knit or sleep on the train). I'm struggling with getting home and doing anything at all. When I cook, I cook for leftovers so I don't have to cook properly again the next night. Or I have gluten-free spaghetti and goat's cheese or sheep's cheese. Or Chinese. My stamina still hasn't come back. It's frustrating.
I'm still fighting my own thoughts of 'I should just be able to...' and the urge to get off my backside and simply go and do stuff. Lots of stuff. All the things that need doing. See my friends and family. Book flights to NI to see![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
ravenlas's family (although I'm out of holidays until the start of May and he's not inclined to go visiting anyhow). I have Christmas presents to hand out to medains and my godson, a present for evie_petrol, some holiday souvenirs for my neices.
I have a corset toille to finish and the corset itself to make. I want to make a pile of medieval clothes so we can go to reenactment events over this summer. Sue wants to book sewing weekends with me. I have a shawl to finish knitting and writing to do.
And the truth of the matter is that I just have to keep on sitting on my backside and suck it up. Because I am making progress, no matter how small it seems. The rests that I fight against fitting into my day, the early bedtime I hate for stealing my evening withravenlas (just an hour more!) - cutting way back on everything I do until it's the bare minimum to keep me at work, keep the house from drowning in absolute squalour, keep some food in - is making a difference.
I have a stomach ulcer. It's not caused by helicobacter pylorii as the vast majority of these things are, it's caused by my overproduction of acid. Ulcers run in my family. We're a little highly-strung; we live under stress because that's how we do things, and if there's no external stresses (ha! chance would be a fine thing!) there are plenty of internal ones. So I'm taking Lansoprazol and hoping to goodness that this is healing up because I have an endoscopy in April to check it out and I never ever want to have another of the damned things because they suck donkey. Dead, decaying donkey, at that.
So that's taking up some of my energy, healing up my stomach.
I also have ME (getting better at saying it!) which (apparently) means a problem with the HPA-axis (I typed up those handouts in a post, you can check it if you like but I can't remember what that stands for right now apart from isn't Hypothalamic the H?) which means that it sucks my energy as though I have an energy-sucking vampire sitting on my back with its teeth lodged in my neck the entire time.
And I've given up nervous energy for Lent.
No, seriously. Not for Lent. I've been living on nervous energy, on adrenaline, for so long that I don't remember a time without it. I know it's still there. If I wanted, I could draw on it. I could bump up my energy levels to something approaching normal. I'd be up and running in no time!... right up until the point at which I crash. Again. And can't get out of bed. I can't keep working off my very own boom-and-bust energy cycle, tempting though that is. I'd get a heck of a lot done that way. But that way isn't going to help my stomach heal itself and it certainly isn't going to help my persistent immune response stop persisting.
So right now, my energy levels are very low. On a score of 1-10, where 1 is 'staying in bed all day' and 10 is 'fitting 3 days into 12 hours', this week I'm hovering between a 3 and a 4. I don't have anything spare. Last year I varied between a 1 and a 6-9 (missing out 2-5 completely). But that 6-9 was all adrenaline, will-power, keeping going because I had to. It's amazing what, actually, I don't have to do. And this 3-4 I'm at? It's all 'real' energy. If I can get up to a consistent 5 in 'real' energy terms by the end of the summer, I'll be doing brilliantly.
Still. I'm impatient. I've spent a lifetime ignoring my body, doing things regardless. Now I feel heavy. I got asked by my GP, my consultant, the physio about joint pain. It's common with ME. I don't get it! Oh, no, wait - actually, I do. I was just so tense all the time that I didn't notice it. Now my elbows ache a lot, my shoulders too. Stomach ulcer? What stomach ulcer? Actually, no - I feel that burn, the indigestion. It makes me wonder if, in a month's time, I'll be walking down the street and I'll stop, look down, and wonder when exactly it was that I lost that leg and how it was that I simply didn't notice before.
Weird, huh?
So if you want to see me, be aware that I don't always have the energy to reply to comments and emails, to talk on the phone, to come round for the evening. I'm heavily emotionally invested in you guys - I love you! - and that takes energy and that's what I don't have much of to spare. I still love you guys and I miss you, but I have to be a hermit for a while. Only this year, though. Next year, I'll be SuperWoman again. Just you wait and see. Promise.
I'm still fighting my own thoughts of 'I should just be able to...' and the urge to get off my backside and simply go and do stuff. Lots of stuff. All the things that need doing. See my friends and family. Book flights to NI to see
ravenlas's family (although I'm out of holidays until the start of May and he's not inclined to go visiting anyhow). I have Christmas presents to hand out to medains and my godson, a present for evie_petrol, some holiday souvenirs for my neices.I have a corset toille to finish and the corset itself to make. I want to make a pile of medieval clothes so we can go to reenactment events over this summer. Sue wants to book sewing weekends with me. I have a shawl to finish knitting and writing to do.
And the truth of the matter is that I just have to keep on sitting on my backside and suck it up. Because I am making progress, no matter how small it seems. The rests that I fight against fitting into my day, the early bedtime I hate for stealing my evening with
ravenlas (just an hour more!) - cutting way back on everything I do until it's the bare minimum to keep me at work, keep the house from drowning in absolute squalour, keep some food in - is making a difference. I have a stomach ulcer. It's not caused by helicobacter pylorii as the vast majority of these things are, it's caused by my overproduction of acid. Ulcers run in my family. We're a little highly-strung; we live under stress because that's how we do things, and if there's no external stresses (ha! chance would be a fine thing!) there are plenty of internal ones. So I'm taking Lansoprazol and hoping to goodness that this is healing up because I have an endoscopy in April to check it out and I never ever want to have another of the damned things because they suck donkey. Dead, decaying donkey, at that.
So that's taking up some of my energy, healing up my stomach.
I also have ME (getting better at saying it!) which (apparently) means a problem with the HPA-axis (I typed up those handouts in a post, you can check it if you like but I can't remember what that stands for right now apart from isn't Hypothalamic the H?) which means that it sucks my energy as though I have an energy-sucking vampire sitting on my back with its teeth lodged in my neck the entire time.
And I've given up nervous energy for Lent.
No, seriously. Not for Lent. I've been living on nervous energy, on adrenaline, for so long that I don't remember a time without it. I know it's still there. If I wanted, I could draw on it. I could bump up my energy levels to something approaching normal. I'd be up and running in no time!... right up until the point at which I crash. Again. And can't get out of bed. I can't keep working off my very own boom-and-bust energy cycle, tempting though that is. I'd get a heck of a lot done that way. But that way isn't going to help my stomach heal itself and it certainly isn't going to help my persistent immune response stop persisting.
So right now, my energy levels are very low. On a score of 1-10, where 1 is 'staying in bed all day' and 10 is 'fitting 3 days into 12 hours', this week I'm hovering between a 3 and a 4. I don't have anything spare. Last year I varied between a 1 and a 6-9 (missing out 2-5 completely). But that 6-9 was all adrenaline, will-power, keeping going because I had to. It's amazing what, actually, I don't have to do. And this 3-4 I'm at? It's all 'real' energy. If I can get up to a consistent 5 in 'real' energy terms by the end of the summer, I'll be doing brilliantly.
Still. I'm impatient. I've spent a lifetime ignoring my body, doing things regardless. Now I feel heavy. I got asked by my GP, my consultant, the physio about joint pain. It's common with ME. I don't get it! Oh, no, wait - actually, I do. I was just so tense all the time that I didn't notice it. Now my elbows ache a lot, my shoulders too. Stomach ulcer? What stomach ulcer? Actually, no - I feel that burn, the indigestion. It makes me wonder if, in a month's time, I'll be walking down the street and I'll stop, look down, and wonder when exactly it was that I lost that leg and how it was that I simply didn't notice before.
Weird, huh?
So if you want to see me, be aware that I don't always have the energy to reply to comments and emails, to talk on the phone, to come round for the evening. I'm heavily emotionally invested in you guys - I love you! - and that takes energy and that's what I don't have much of to spare. I still love you guys and I miss you, but I have to be a hermit for a while. Only this year, though. Next year, I'll be SuperWoman again. Just you wait and see. Promise.
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no subject
Date: 2009-03-19 06:39 pm (UTC)From:no subject
Date: 2009-03-19 09:39 pm (UTC)From:I'm doing remarkably well, considering, yes. But I was asleep for 6 months from September '03, up to 18 hours a day. It's taken a lot to get this far, and now I'm having to un-learn some of my coping strategies because coping does not equal getting better... :( I want my magic pill, ta muchly. :)
no subject
Date: 2009-03-19 09:42 pm (UTC)From:no subject
Date: 2009-03-19 08:56 pm (UTC)From:no subject
Date: 2009-03-19 09:51 pm (UTC)From:no subject
Date: 2009-03-19 10:01 pm (UTC)From:no subject
Date: 2009-03-19 10:15 pm (UTC)From:no subject
Date: 2009-03-19 10:18 pm (UTC)From:no subject
Date: 2009-03-19 09:31 pm (UTC)From:no subject
Date: 2009-03-19 09:52 pm (UTC)From:no subject
Date: 2009-03-19 10:21 pm (UTC)From:Looking forward to seeing the photos!
no subject
Date: 2009-03-19 10:27 pm (UTC)From:no subject
Date: 2009-03-19 10:35 pm (UTC)From:We had fun last year too and it was nice to find another knitter. Most of the time I am the only one keeping my hands busy with yarn at cons.
no subject
Date: 2009-03-20 11:42 am (UTC)From:One of my friends knits quite a bit. She's 12 and comes into York on the train to go to school, and she gets a lot of second glances, apparently. :)
no subject
Date: 2009-03-20 11:49 am (UTC)From:no subject
Date: 2009-03-20 11:52 am (UTC)From:no subject
Date: 2009-03-20 11:57 am (UTC)From:no subject
Date: 2009-03-20 02:17 pm (UTC)From:no subject
Date: 2009-03-20 10:58 am (UTC)From:no subject
Date: 2009-03-20 11:39 am (UTC)From:I may stock up on some lush bathbombs and soak for most of the weekend. :)
I have a 'total relaxation' cd from the York NHS hospitals foundation trust - would you like a copy?
no subject
Date: 2009-03-20 01:12 pm (UTC)From:no subject
Date: 2009-03-20 01:53 pm (UTC)From:no subject
Date: 2009-03-20 03:04 pm (UTC)From:no subject
Date: 2009-03-20 03:24 pm (UTC)From:no subject
Date: 2009-03-20 06:43 pm (UTC)From:no subject
Date: 2009-03-20 12:18 pm (UTC)From:I met a lady who works out of Miller's Yard on Gillygate and specialises in 'Reverse Therapy' for ME, not cheap but there is potential for improvement. I'm sure she would be happy to chat to you - I shall try and dig out more info if you'd like...
no subject
Date: 2009-03-20 01:52 pm (UTC)From:no subject
Date: 2009-03-20 02:06 pm (UTC)From:no subject
Date: 2009-03-20 02:17 pm (UTC)From: