No Good Days

[leashy11]

Apologies if this is in the wrong place, I never seem to post where I should! I've noticed that most people on this forum talk about having "good days" where they feel alot better until something else goes wrong but I don't actually ever have any good days and haven't ever since my pain started almost 6 years ago, my pain is constant and always in certain areas but sometimes with added areas thrown in for good measure, is that normal with HMS or should I be having some good days?

[Blaadyblah]

I can't speak for anyone else, but when I talk about good days, it's relative. Simply put, using your own words...

"constant and always in certain areas but sometimes with added areas thrown in for good measure" = good day
"constant and always in certain areas but sometimes with added areas thrown in for good measure" = bad day

Though of course there are lots of other things to consider too - POTS symptoms flare up from time to time which can make what would be a good pain day a bad health day etc. On a good day I may manage to walk the quarter mile to the local shops, get a little shopping done and run an errand or two. On a bad day, I am unlikely to make it out of the front door.

Not what you wanted to hear, I'm afraid but that's how it is for me. It's a matter of perspective. My good days are a bleep of a lot better than my bad days. I choose to see them as good (after all it can be, has been and will be worse). If I didn't look at it that way I would never have any good days, nor would I ever have any hope of having good days.

[sheppeyescapee]

I don't think I have any days that are completely pain free, but some days are better than others. A bad day involves only getting out of bed for the bare essentials and even that is a struggle, a good day is getting out and getting things done/having a fun day but that is usually followed by a bad day (very bad at pacing )

[gila]

I havent had a pain free day in some 12 yrs- so good day/bad day is indeed just a qu of levels of pain-
on a good day I can walk 1/2 to 3/4 mile, with pain though with every step and with constantly checking and rechecking gait and posture (but to see me you wouldnt know that at all), before I need a rest and/or before pain/walking gets worse / can do dishes (like 6 plates, 5 mugs,3 glasses, 2 pots) without pain getting worse for long after, actual doing it is always rather painful, doing some 10-20 minutes cleaning in one go etc

and 'overdoing' on a good day ... ... well last night I was 'stupid' and did some tidying and light cleaning for some 45 mins non stop , I was on a roll , and owwww today fingers are swollen to massive sausages, hands/arms tremor/shake, hands/arms/shoulders/back pain are v 'unpleasant' (once upon a time I would have called that pain level 'massive/evil etc' and wouldnt have done anything today- but today I shall do less than planned and do things in 5-10 mins increments...)

so 'good day' now is a trillion miles away from even just a 'normal' day pre HMS....sigh...
xxg

[milia]

I think it depends on what your constant 'average' is (average being the term I use for the usual pain/tiredness you can expect under the best conditions). Take this as a "normal" day. If you have less pain/can achieve more, it's a good day. More pain/need more sleep/can't do much at all, it's a bad day.

[Spireite]

How do you define a good day or bad day?

I just have days! I would say 2000-2006 were all very bad days! The day I can sit without injuring myself will be a very good day because I haven't been able to do that for 10 years. Or if I could look down and do more than 5 minutes of cross-stitch, reading etc, that would be a good day too, but I haven't been able to do that for 10 years either. (But at least I never have to spend weeks lying on the floor because I can't hold my head up.)

Individual joints each have their own good and bad days, mostly at random, to make life varied.

[leashy11]

Actually my HMS twin I think having a day where I could sit without severe SI pain would be a very, very good day for me too! I think I kind of hoped these good days people mentioned were better than they are, I hoped eventually I'd be able to do some "normal" stuff without huge amounts of pain or problems but it seems I was being a bit too optimistic!

[jojackson]

This is such an interesting question!

This may be a negative way of seeing it, but I would be so cross with myself if I didn't appreciate what I can do now, as I don't want to look back in five years and wish that I'd known that these were 'good' years.

For me, it has been very much about having a flexible approach to 'normal'. Every few months, I may find that normal has changed, and I have a new normal. Sometimes things have improved and I can do more; sometimes I can do less.

It's amazing how much one can handle, given time. I now have nausea pretty much constantly at a level that a few years ago would have kept me on the floor in the bathroom, and though it's still really not very nice, I can function around it. It's the same with pain and dizziness and tachycardia and most of the other things that everyone else here experiences.

I try not to imagine what it would be like to be pain-free or absolutely bursting with energy, or to wake up in the morning feeling fully refreshed and vibrant. That way madness lies...

[Charlee]

I feel your pain i never have a 'good day' pain wise, i am always in a lot of pain, somedays i can mentally cope with it better these are what i would refer to as 'good days' the days when i wake up unable to walk and cannot help but cry with the pain these are 'bad days', i guess though some people are effected differently, when i was younger i had some days that the pain was less so i guess those would have been my good days. Its all down to personal curcumstances. x

[tigerbunny]

Hey leashy,

Sorry we have the bad news...

I agree with all here. And I wanted to add...
My theory is that it's right about 5 to 6 years when we start to realize that good is relative and it's likely that we won't get to have a day that's like it was before the pain.

I used to work with a woman who had a neurological condition (and some other things) that were giving her chronic pain. I used to tell her, weekly, 'honey, you haven't even figured out you're chronic yet.' It's actually kind of freeing, to start function around the pain that's our 'normal' level. In my opinion, strictly.

Actually my HMS twin I think having a day where I could sit without severe SI pain would be a very, very good day for me too! I think I kind of hoped these good days people mentioned were better than they are, I hoped eventually I'd be able to do some "normal" stuff without huge amounts of pain or problems but it seems I was being a bit too optimistic!

[Spireite]

So we are basically saying that once struck down with hms there is no going back to ever being pre-hms-like? (though I plan on getting close)

My 6 or 7 bad years with no good days changed due to me studying anatomy and working out I need some far better orthotics to control my severe overpronation than the flimsy bits of things many podiatrists had sold me. And then searching the land for a good podiatrist to supply them. That was the turning point and realisation that improvement is possible. That was even before I diagnosed myself HEDS. Onwards and upwards since then.

[pretzel]

This thread is so useful, not only has it made me realise that waiting for it all to be OK and pain free again is an endless path but also pointed out other things that I'd forgotten were actually problems like the hanging the head when reading or pootering which I have already started to work around. I've also realised that since March-ish I've been on a string of what last year would have been very good days. Overall a positive thread.

Thanks peeps