Illin'

[ailbhe]

People really don't seem to understand my current level of unwellness. I can walk a couple of hundred yards but I have to rest. I shower sitting down most of the time - I celebrate being able to shower standing up, but I did it unwisely the other day and had to lie down afterwards for a rest. I have developed strategies for keeping the children amused and fed, and they seem to get plenty of exercise though could probably use more.

However, I walked almost a mile without significant pain on Friday, so it's possible. Just not terribly likely.

It's making Christmas a big, big deal. I'm having to plan extremely carefully so that we can get everything the children expect as a tradition (Christmas pudding trivial and could be skipped or bought in, Christmas trifle very very important to get right). I'm not sure when I'll get the energy to take them all into the town centre but it had better be soon; we have birthday and Christmas presents which have to be bought *by them* not by me.

I think I have a plan, but it's tricky, because if I can't walk, the plan won't work, and I never know until I wake up how bad my knees will be.

Comments

[sfred]

I have been noticing and thinking of you but not commenting, which is no better than not noticing - sorry. Is there anything I can do to help without being local?

[ailbhe]

Not really, but it's nice to be noticed.

[rmc28]

That sounds horrible. I hope your plan works.

[lnr.livejournal.com]

Huge sympathy. I hope you all have a lovely Christmas.

[1ngi.livejournal.com]

Much much sympathy. Will the kids go shopping with anyone else?

[ailbhe]

The trouble is that there isn't anyone else and we got a birthday party invitation THIS AFTERNOON for a birthday tea TOMORROW AFTERNOON so...

[ailbhe]

Oh shopping with them was SO NICE they are lovely.

[1ngi.livejournal.com]

Oh and buy in as much ready made stuff as you can afford - it's the only way I'm going to be able to cope this year and I don't have childer.

[ailbhe]

Yes, we're buying in what we can, but there's no gluten free trifle sponge and ACTUAL TEARS welled up in Emer's eyes when I said we could have one for everyone EXCEPT me.

[euphrosyna]

My boyfriend's sister makes gluten free trifle - I think she makes the sponge from scratch. It is probably far more effort than you are able to put in, but i could ask her for the recipe if you like?

[ailbhe]

Actually I asked a gluten-free baker at the market the last time I went to town and with gluten-free flour it's actually apparently really easy, and Rob will do the donkey-work. But thank you :)

[nakedfaery.livejournal.com]

Many hugs and much empathy. xx

[ailbhe]

Yeah. If we didn't have grocery delivery and another adult almost every evening, there's no way I could cope.

[helenprev.livejournal.com]

Empathy from here too! I've actually totally forgotten that this isn't entirely normal, in fact I boggled at you being able to walk a couple of hundred yards! Weird that I am perfectly mobile and well, but caring for Freya means I am constantly thinking of everything in terms of what she can do. And nobody else understands at all if they aren't living with it. ("But can't she just...." "No.")

Good luck with Christmas. I managed it all last year with a broken foot by doing absolutely everything online and relying heavily on other people (which I loathed).

Many gentle hugs.

[ailbhe]

I'm not as debilitated as Freya yet, and I hope I won't get that far, but who knows? There's absolutely no information for any of it.

[etoile-violet.livejournal.com]

Sympathies from me. It's horrible when you can't even rely on your own body.

[ailbhe]

We'll always have Paris.

[barakta]

Body fail sucks. Inconsistent bodyfail is even worse cos you don't know where you are at all, ever.

[ailbhe]

Yes! I'd almost prefer to be sure I *couldn't* do things.

[datagoddess.livejournal.com]

Total empathy from me on the knee stuff, I never know how much I'm going to be up for, myself. *hugs*

[ailbhe]

I keep getting invitations for Christmas parties and I can't RSVP. "I dunno, it depends on how I feel" is as rude as it gets, you know?

"i dunno, it depends on how i feel" is as rude as it gets, you know?

[feetnotes.livejournal.com]

no, honestly no, it isn't rude to anyone with more than the faintest inkling; and some variation, such as "it depends on whether i can," gives people a clue (tm) you're not being rude, and may expand a little if asked (& if there's time atm; or, later).

[rivka.livejournal.com]

I am so sorry to hear this. How awful.

[ailbhe]

The scary part is I don't know what it IS. I thought it was just exhaustion after Astrid's illness, when I was on crutches last Christmas, but now... we don't know.

[kalmn.livejournal.com]

Are you thinking about new knees? I quite like my new left knee, and sooner or later am getting rid of the right one.

I'm sorry it's so hard.

[ailbhe]

Not until we have some idea of what's wrong. I'm definitely better since we got the vit D under control.