Any one else with arthritis in back and scoliosis?

Wonder how you are today Seamonkey??

I am well, but very busy catching up on the kids mess :roll: Three teenage girls is no joke!!

Hope your day is ok.

Love

Toni xx

Morning seamonkey, firstly a word to the wise: when you have a good day, try not to blow all your energy in one go. You sounded very busy yesterday (it's good if you can be, of course) but pacing yourself is essential: arthritis is very good at tricking you into a false sense of security, making you think that everything is fine, so you set to and do the chores etc then the payback visits and hangs around, and you wonder where on earth you went wrong. I no longer trust the good days, I know what will happen if I do.

Right, long-life trammies. I think I first aquired these towards the back-end of last year, September/October time, and to be honest I don't take them that often. Remember I am 14 years into this palaver, and my decline has been reasonably gradual. thus giving me time to adjust. I started off with one bad knee, then in 2003 the other knee began to play up, by 2006 my sacro iliacs were s[parkling into pain, and it is now in my ankles and toes. The pain is continuous but I am used to it and can usually manage quite well. I think I must have a relatively high pain thresh-hold, which is a double-edged sword in itself. What does vary, however, is my ability to cope with it. That fluctuates widely and I am lucky in that I have a raft of pain dullers at my disposal.

Good days: pain, yes, but dulled sufficiently by 2, or maybe 4 30/500 co-cos.

Rougher days: pain, yes, but dulled by up to 6 co-cos during the day and a 50mg trammie to send me off to what I laughingly call sleep. (I wake every 90 minutes or so, with pain plus night sweats caused by the oral steroids, and these are exacerbated by the trammies).

Bad days: pain dulled by one, or maybe two slow-release trammies, topped up with co-cos as required.

The worst: a good slug of Oromorph. It doesn't do much for the pain, but it takes ME away from IT very effectively.

Last night I drifted off with just two co-cos (taken at 10.15, they topped up the four taken during the day at 6 hour intervals), woke at 12.30 and again at 1.45, had a 50mg trammy at 3am, but haven't been back to sleep, which is a shame, they usually send me off quite nicely! I would have gone for a drive but the weather is foul and I don't like driving when 50g trammied - the slow release ones are fine from that point of view.

Everyone is different in how much they can manage pain-wise. I suspect I do push myself too far with it from time to time, but I am wary of the dullers losing their effectiveness, so I ration them. I knew from a very early age that children were not on the agenda so looking after a family is not a factor, I work at home and can therefore tailor my work to my needs (I reckon today's appointments stand a good chance of being cancelled, I am too tired, stuff hurts and I now know my limits) so all in all I am very, very fortunate in my circumstances. My husband is very understanding, which is a boon - but he is a total ostrich when it comes to talking about the future and what it holds: I am realistic, he isn't.

You are not imagining these things, they are happening: one of the most difficult features of arthritis and its associated conditions is the sheer variability of it all from day to day: I am currently in the PA pit but by tomorrow I could have metaphorically climbed out from it, for all I know. That is exasperating, frustrating and demoralising - it would help matters considerably if one knew where one was with it all! I hope today is another good day for you. DD

Hi Seamonkey

Just butting in to say....you are very wise - save the good days for the family and respite from the bad ones for you too.

Brilliant days are for doing more and bad days for looking after YOU.

I had had back problems for a bout 20 years or more before my op - the medical profession just seem to ignore us don't they? :roll:

DD cancel appts today eh? Look after DD today instead

Love

toni xx

Hi Seamonkey,
You say you are mute when it comes to docs.....make sure you go with a list to docs/rheumy/ortho or whoever.....I forget things if I dont....that reminds me its my 2nd appt for acupuncture tomorrow at 8.30am so I must make a list of how it has affected me over the last week for him.
Pace yourself.......Its OK getting payback the next day if you've been doing something nice the day before....you get used to knowing that you will suffer afterwards but its not nice if its housework youve done and you suffer....dont believe in that...I know i havent got the kids at home but still.....I'm sure there must be some things you can cut out. My housework doesnt get done as thoroughly as it used to :oops:
Take ironing for instance......very little gets ironed...only what is absolutely necessary....its surprising the things that if you wash them gently and then when the come out of the machine iron them with your hands before hanging them up LOL how much you can get away with. I know with kids its different but still.
Would your husband vac for you.....mine does a thorough one through the house, up and down stairs once a week. I have a light vac cleaner that I just bring out in between times to do the living room hall etc...that makes a difference. Upstairs gets ignored lOL
I have a perch stool and find that sitting ironing is much easier.
Anyway....pace yourself and look after yourself when you are havining a flare
Love
Hileena

The diary is a good tip from puffin, seamonkey (I can sooooo har Jonny Vegas when I type your name!) It doesn't have to be a wordy thing, you can devise your own short-hand for stuff and it does help to build a picture of what is going on. We think we will remember stuff but we rarely do. I hope you are having your third good day in a row, I really do. DD