Graph of Disappointing Results

[jeshyr]

Dearest Friends,

Remember that "standing up and sitting up a bunch of times a day" lark I started back in September? The one that fifty zillion of my friends told me was stupid?

… it didn’t work.


Yeah, I know you’re all shocked too … the crappiest thing about these exercise thingies is that to force myself to do what’s needed I have to convince myself it actually *will* work. Even if it’s against my better judgement, I have to because otherwise I can’t summon enough willpower to make myself do it.

So I drew a pretty graph because I have a record of every single day’s exercise amounts for the entire time I’ve done this. It’s really incredibly pathetic, actually. Once I graphed it it’s perfectly obvious that every time I increased the amount of exercise I was trying to do, I also increased the percentage of the time that I couldn’t hit my targets. Once I graphed a rolling 7-day average it’s very very very clear that the only thing I managed to achieve was to increase the variability of my results. That was six solid months of working at this every bloody day, so I am PISSED OFF.

Luckily I am seeing the exercise lady next week, so I am taking my graph and my righteous indignation and if she tells me again that I just need to "keep persisting" and "try harder" I may shove it up her nose … metaphorically. But she told me initially that I would start to see results in 8 weeks, so when I went back after 3 months with no results she just said to persist, and when I went back again a month later she said the same … that was 4 months and I had a "challenging" conversation with her about the fact that she couldn’t just keep saying that forever. So now I have evidence and righteous indignation and I am going to wave both of them around ...

Yeah.

Also...

In other news, exacerbated symptoms have REALLY been kicking my ass the last few weeks :(

I unexpectedly have got back a TON of bone and joint and muscle-feeling pain in the last few weeks - the "ache all over all the time" kind. It made me realise it’s been gone - it was so gradual I hadn’t noticed it leave!

I am strongly suspicious that it was the prednisolone (steroids) suppressing whatever was causing the pain (mild inflammation?) and now the pred dose is really low it’s come back… I never noticed it before because it took quite a while (months?) to settle after I’d started the pred. The only way to test that, really, is to jack the prednisolone back up which I’m not willing to do just now.

Other fun and amusing symptoms I have been kicked by since the pred got below about 5mg now include:
- Frequent flushing, feeling 'hot' all the time (subjective I think?).
- Itching all over, dermatographia, and red prickly rashes that come and go.
- Tons of GI symptoms including bloating, gas, severe diarrhoea, nausea, not feeling hungry.
- Background aching pain all over, spiking quickly on any exertion or use (even my usual levels).
- Much worse insomnia than before. My fatigue’s worse but whether that’s caused by not sleeping or something else I don’t know.
- Grumpy, labile mood (maybe just from all the dammed symptoms? hard to tell)
- Restless legs through the roof (I think this is caused by extra antihistamines. Tried switching from phenergan to loratadine and it’s cut it by about half, still enough to keep me up though).

So yeah, fuck this goddam body … I am really really not happy.

I got my general doc to do some blood tests and my iron is a touch low - not dramatically but I’m going to take some in case it helps the restless legs (already taking magnesium, calcium, etc.). It’s keeping me awake until 4am, 5am, sometimes 6am which is really really not good.

I know I’m being sort of stupid and the obvious sensible thing to do at this point is to conclude that the lower prednisolone dose is a stupid idea but I hate the bloody stuff so much! And I’d really like to be off it a little while, even if it’s only so we can measure symptoms and I can get a good baseline … that way at least I could figure out how much it’s helping. Obviously it’s helping more than I thought it was - I didn’t really think it was doing anything! Obviously that was hilariously wrong...

I see the lady who prescribed the exercises on the 13th of March, and then my other Alfred guy on the 17th, so I’m wanting right now to just hang on until then and see how things go for now … I’ll be OK, just wanted to let you all know why I have been so quiet, etc.

Fucking bodies :(

r


PS
Pretty graph should be below. Ignore the bit to the left of the red arrow, that was unsustainably enormous effort that couldn’t be maintained. I hope the graph’s not too enormous or anything - I don’t have the energy to go edit the post after I send it so please forgive if it’s hilariously crazy sized. I’ll poke it in the morning if needs be.

Comments

[sqbr]

Blech. Sorry it didn't work out and that this woman is ignoring your actual experience in favour of her perfect vision of what "should" happen.

[jeshyr]

That is a very good description of what's happening! Hope I can get through to her

[splodgenoodles]

Oh my sympathies Ricky. xxx

Incidentally, were you not on Gabapentin at some point for RLS?

And also - watch the iron supplements, they can mess with your gut.

[jeshyr]

Still on it actually - rls just breaking through now.

Will be careful with iron - have been given small dose for that reason.

[natf]

Yeah, I can't take any supplemental iron that is not in a foodstuff (liver, spinach, etc.) without huge nausea. I think the iron tends to be in a totally different form/compound in supplements than in these foods.

[synecdochic]

- Frequent flushing, feeling 'hot' all the time (subjective I think?).

According to my doc, this is a symptom of mast cell disorder, so it very well might not be subjective!

<3

[jeshyr]

Haven't actually measured lately but it's always been subjective before. May find the thermometer and check!

[acelightning]

keep in mind that feeling hot and/or "flushing" can also be related to hormones, and not only in the obvious ways. i used to know a guy online who'd had testicular cancer, and they simply removed his testicles; without any internal source of testosterone, he got the symptoms you'd think of first, but he also got menopause-like hot flashes. pretty much any large change in hormone levels, in either direction, and not only estrogen, can mess with your body's temperature regulation. and, of course, all sorts of medications, diseases, and emotional states can do the same thing.

not terribly relevant side note: all my life, i have felt uncomfortably warm when other people perceived the ambient temperature to be "pleasant". i never got hot flashes; instead, my personal temperature adjustment kept going up, until now i sometimes get sick from the heat at 23° C. yet when my body temperature is taken, it's always slightly lower than "normal"; instead of the canonical 37, it's usually 36.

*enormous sympathetic comforting hugs*

[jeshyr]

Do hormone flushes respond to antihistamines and prednisolone and mast cell stabilisers though? My understanding is they wouldn't.

[acelightning]

that was kind of my point. between your body's own unique weirdnesses, and the various medicines you take, it's probably pretty complicated even for a pharmacologist to sort out which of the many things that might be causing your "overheating" is the one that's actually doing it. or it might be the result of two or more things interacting. IANAD, and i know it's a pain in the arse :-(

[vass]

*hugs offered*

the crappiest thing about these exercise thingies is that to force myself to do what’s needed I have to convince myself it actually *will* work.

I think I know that feeling. Not from the same situation, but I know about messing with your own head and your own perception of reality in order to do a thing you feel like you have to do. And then having trouble sorting out which part of the pressure is coming from inside and which from outside. It's so shitty.

[jeshyr]

Thanks ... yeah, sounds very similar. And my ability to believe my own perceptions when it comes to illness is very dicey anyway ... this stuff really screws with it. :/

[ephemera]

Here's for evidence to serve up along with your rightious indignation - and I really hope she *listens*

[jeshyr]

Thanks :)

[feyandstrange]

Good job doing all that - both the exercise and the tracking thereof. If she doesn't listen, ask for a second opinion, because this is obviously not helping you.

[jeshyr]

Unfortunately second opinions aren't an option - the number of specialists in this area at this level is sufficiently small that this doc was the only person on the list of 'worth trying' that my main specialist and me put together :/

I got told off by some Facebook CFS/ME folks for "pushing too hard" too (when I posted this same graph) which I found frustrating ... apparently I'm supposed to find a level which I can replicate every single day without fail. Have pointed out there was no such level because so many things screw up my health like migraines, visiting doctors, thunderstorms, going into the garden for 5 minutes, hugging the cat too long, having a shower, or getting my period (amongst other things). Did feel rather like saying "stop trying to teach your grandmother to suck eggs" ... *grump*

[shehasathree]

Although my capacity for activity is much higher than yours, I find this "unable to find a baseline" thing incredibly frustrating. In order to do little enough that I *could* replicate activity levels every single day, i would have to cancel any and all social obligations, any chance of work, and getting to health-related appointments that aren't just up the road would cause difficulties. Even if it's the "ideal" it's just not... reality.

[jeshyr]

Ugh, yes! My level is difficult but the problem is effectively the same...

[sheramil]

i don't expect an Exercise Lady likes being told that Exercise isn't the Answer.. but that's her problem, and she shouldn't make it yours.

[jeshyr]

Wanna come be immorral support and glare at her? or, y'know, wait outside and hug me afterwards?

[sheramil]

you just need to subtly let her know that she isn't the only Exercise Lady on the planet, and if she wants to keep your trade she's going to have to be a little less rigid.

i can be there, but i think i'll need to lose some weight before she takes me seriously. ;/

[jeshyr]

Well hey she's not taking *me* seriously, so we'll make an awesome pair :)

[natf]

Yeah the image is nicely sized on LJ but hugely too wide for my display style on DW. Weird.