Seriously, how can we cope with daily life?

[SBee]

Ok, first I am having a good day in the mental health sense, but am really starting to wonder how best to cope on a day to day basis?

Today I pushed myself far to much in a physical sense, ( again) purely because there's so much needs doing in house and garden let alone other stuff. So naturally the fatigue has kicked in, and as is with me, the fibro nerve pain has increased along with stiffness, and the arthritis in the hands has ramped up.

I genuinely do accept these conditions aren't going away and I continue to add lifestyle changes in, to give my body ( and mind) the best I can.

But it's the actual practicalities of living? We have cut down on housework ( who wouldn't ) and my husband ( himself ill) has taken on even more jobs, I still try to work\rest, but it's just not feasible to do that every day. Life needs work.

I'm awaiting a talk with a rheumatologist nurse tomorrow and next week talking to my gp. I may ask about pain meds to block things so I can actually work more? But would that just mask things , and in doing so actually worsen symptoms or health in the long term?

Gah! Anyone any suggestions? I know full well we're all in the same boat..

 

[BlueBells]

@SBee

Hmmmm. Interesting post. Interesting timing

Ok, first I am having a good day in the mental health sense, but am really starting to wonder how best to cope on a day to day basis?

Today I pushed myself far to much in a physical sense, ( again) purely because there's so much needs doing in house and garden let alone other stuff. So naturally the fatigue has kicked in

Generally, mental health, yeah, I'm okay at the moment.

Fibro is trashing me at the moment, so much for plans

I'm learning to 'read' the signs, and the other day (I think it was Sunday, but not sure) I had some crates to wash, so I rinsed them over and went in to get the brush and cleaner. By the time I got out again, I felt fibro saying, 'enough for now, rest'. But, head thought, only half an hour or so, go for it.



My heart rate took off, I felt dizzy, I was short of breath. Hmm, okay, sit down for an hour or so. Then up and off and jobs done without an hitch! I could have pushed through, but then I'd be pooped for a day or two, so I was wise to stop when I did.

For weeks now, this has been the routine (if that's what one calls it). I have major things to do. I am supposed to be renovating my house, been near two years and about a month of work done (exaggerating) and mid April to end May, I planned to powerhouse through the work!!!

Haven't even been to the place yet

But it's the actual practicalities of living? We have cut down on housework ( who wouldn't ) and my husband ( himself ill) has taken on even more jobs, I still try to work\rest, but it's just not feasible to do that every day. Life needs work.

Exactly

So, I have altered a few of my plans, well, tweaked them , really. I will have a sparse house, only what I need and use, but still the few knick-knacks to make it feel like 'home', just very 'clear and sparse'.

This means lessens housework (my daughter gave me a robot vacuum a couple of years ago, I LOVE it !!) My son has one that washes hard floors and vacuums carpets...I am so considering one, but I have no idea the price. I can run into difficulties sweeping etc as I lose grip and cannot hold the handles. Putting one palm over the top helps to a degree, but strength still vanishes.

I may ask about pain meds to block things so I can actually work more? But would that just mask things , and in doing so actually worsen symptoms or health in the long term?

Years ago, pre diagnosis of fibro, I had the issue with my arms, and when it got to paining, I figured I must stop or days of doing nothing would follow. I would only take pain meds if I sat and did nothing, as I figured the pain is a warning, and masking it and pushing through will just be worse. The few times I tried taking meds and pushing through, it showed in no uncertain terms....do not do that!!!!

I don't know that any of this is helpful to you. I think it just shows, yep, we are both in the same boat, and Captain Gremlin is at the helm

Lots of hugs, take care

 

[SBee]

@SBee

Hmmmm. Interesting post. Interesting timing

Ha! If I have written ' your ' post I think you have answered what I mind of knew myself in reply!



Fibro is trashing me at the moment, so much for plans

Have a combination of the fibro and RA fighting with each other to be too dog I think. It just be gremlins season...

I felt fibro saying, 'enough for now, rest'. But, head

again,same. Head over rode me. I should have stopped I know,but it's been bad weather wise to get in the garden so I wanted to achieve far more than I should have.








So, I have altered a few of my plans, well, tweaked them , really.

I already have @Bluebells () but even I. Doing that there are so many essential tasks and I think I am struggling with that.
I have adapted in needing to altered tools std so I can hold them ok,can't lug sacks of compost now, so I transfer some to a small trug to put less weight on the hands.
But it's those days where it either feels too good to stop ( hands in soil makes me happy ), or that slight panicky feeling theres just so much to do. I already love a wilder looking garden. Better for wildlife and filled beds means less room for weeds. And just look better for my style anyway.


I would only take pain meds if I sat and did nothing, as I figured the pain is a warning, and masking it and pushing through will just be worse. The few times I tried taking meds and pushing through, it showed in no uncertain terms....do not do that!!!!

I won't have any option RA wise, some meds are essential to halt further damage. It's whether or not these will be enough to lessen the residual pain? But masking pain and feeling more continuing to push myself is a concern I need to bring up with the hospital.

I don't know that any of this is helpful to you. I think it just shows, yep, we are both in the same boat, and Captain Gremlin is at the helm

YES it really is Bluebells !!! Just the instant understanding and knowing it's not just me thoughts!!

Really you have made me smile today. I know I shouldn't have done what I did, the head rules me yesterday, so today it's the rest of my bodies turn.

Hiya hugs back to you, hope today\evening is wonderful for you

Lots of hugs, take care

 

[BlueBells]

@SBee

Well, at least we're not alone

 

[SBee]

Now that's the truth @BlueBells

I realise now that yet again I failed to take my own advise that I offer to others - failed to listen to my bodies warnings and paid the price.
I ( mostly) work in a balance with regard to what the fibro symptoms want\need but am so new to beginning to understand the additional inflammatory arthritis I almost ' forget ' the increase in flares with both of them.

Just need to take my time in adjusting. And get some proper long term meds to stabilise things. Oh. And I need more patience. ( if you hear a noise that's me laughing hysterically again !. )

 

[BlueBells]

@SBee

The balancing act. I think I've had myself on the edge for weeks and a couple of times I just watched TV /movies or did puzzles for a couple of days. It helped heaps, but then back to pushing the limits again

The frustration of things that must be done and the need to rest, it doesn't balance well in the time that is available, but we do try, don't we? I'm thinking that I need to go to the doc and get a good check over, in case something else is going on, but when every time I do that, there's nothing wrong, one feels like a bit of a dope.

 

[Badger]

It's difficult for us to pace ourselves and get things done. With fatigue and pain beforehand and more so afterwards it gets very frustrating. Everything seems to take longer when prioritising tasks and breaking them done but there's only so much that we can do.

@SBee I'm sorry to hear that you're wiped out after overdoing it. The stiffness and pain can really hit after having a rest. It's a difficult balancing act but worth while persevering and making small changes as you go along.

@BlueBells the robot vacuum sounds great, I've made the house gradually more sparse to make it easier.

 

[SBee]

That's just it @Badger. frustration, the need to just bulldozer over common sense.

I just refused to listen and spent the rest of the day in so much pain and distress I didn't now what to do with myself.
Cold compress on the hand and wrists inflammation, and rest,with gentle stretches for the fibro.

So the garden will just have to grow wilder and yep, I am making small changes and ensure I always stop after say 20 mins hard work. Test then 're evaluate. Hope you are going ok.

@BlueBells I know I should rest more but when your work ethic for your life has been to Get Things Done, it's hard to change. Am sure I will have more days like this but hopefully I will get on the RA drugs soon,even if they can take weeks to take effect which may alleviate those symptoms then maybe I can concentrate more on what the fibro needs again.

Am changing my name to BALANCE! It's really is the key to all this.

Take care

 

[Badger]

@SBee hopefully you can get a bit of relief with the cold compress and some reasonable sleep tonight. Sometimes I remember to remind myself of 'beginners mind', stop, take a breath and a fresh look so to speak before deciding what to do next. I'll hire a gardener once the weather improves, it's definitely gone back to nature here

 

[hope23]

Ok, first I am having a good day in the mental health sense, but am really starting to wonder how best to cope on a day to day basis?

Today I pushed myself far to much in a physical sense, ( again) purely because there's so much needs doing in house and garden let alone other stuff. So naturally the fatigue has kicked in, and as is with me, the fibro nerve pain has increased along with stiffness, and the arthritis in the hands has ramped up.

I genuinely do accept these conditions aren't going away and I continue to add lifestyle changes in, to give my body ( and mind) the best I can.

But it's the actual practicalities of living? We have cut down on housework ( who wouldn't ) and my husband ( himself ill) has taken on even more jobs, I still try to work\rest, but it's just not feasible to do that every day. Life needs work.

I'm awaiting a talk with a rheumatologist nurse tomorrow and next week talking to my gp. I may ask about pain meds to block things so I can actually work more? But would that just mask things , and in doing so actually worsen symptoms or health in the long term?

Gah! Anyone any suggestions? I know full well we're all in the same boat..

The juggling act as well as trying to just deal with life can feel exceptioning daunting and overwhelming. I wish i had a one stop shop answer or suggestion and am sorry you are struggling at the moment

My situation is slightly different, i have active ankylosing spondilitis, ehlers danlos with active(and frequent ) dislocations, as well as fibro and CFS. Right from when i first got crook over 8 years ago, i tried so many alternative therapy options, diets etc, you name it i tried it, and gave each and everyone a good 6 to 8 months try.
For me medications has been the only thing that has helped in terms of symptoms In a significant and measurable way.
But i would strongly advise against getting or asking for pain meds in order to be able to push through and over do it, the crash from overdoing it after utilising pain meds to push through is significantly worse than the crash after pushing through without utilising pain meds.

Slightly off topic, but pesonally I find the concept of pain being the bodies warning system very interesting, more specifically from the perspective of people like us. For those of us with fibro, and other conditions our pain response and its purpose i feel has shifted, the best description i found that made sense to me is that in all of us there are oodles of dormant cells, for us with chronic pain conditions, those cells that should be dormant, are awake and are all set to pain. So at that point, is pain acting as the bodies warning system, or has that warning system malfunctioned on a long term basis. I dont really have the answer.

For me personally quality of life is key. And given the fact that for people like us our bodies pain response acts differently to those completely healthy folks. depending on your use of pain meds, its been my experience that the pain meds dont 'mask' the bodies warning system for the plain and simple reason that if our warning system were actually working the way it should, we wouldn't be having the conversation, we wouldnt be needing to consider pain meds to be able to function and help with the management of a vast variety of symptoms. For me personally pain meds, as well as a number of others(including immune suppressants to manage the ankylosing spondilitis) allow me to keep my pain to a manageable level that i can actually think straight, without those i sit closer to a 6.5-7 and I cant function, think straight or even sit still to be quite honest because i want to crawl out of my skin.

Everyone on here could give you a million suggestions but at the end of it you need to find what works for you. If pain meds is something you've tried and they didnt help then for you they may not help. But if you havent(and youve tried everything else you can) i think that pain meds do have there place. What i will say is this though, start small on the pain meds scale, give them a good length of trial 6 to 8 weeks atleast. If you can get relief from those lower rungs on the ladder of pain meds then thats great.

 

[SBee]

Thank you @Badger
Because I have had these symptoms for so long and only diagnosed in December, I kind of reached that point in thinking " ok, I've got a diagnosis now what do I with it ? " had no follow up or any contact in the to grow sense from any medical side. Anything I have learned is from my own research and the amazing forum members on here

So I should may be cut myself some slack for pushing myself when I shouldn't. The theory of pacing makes total sense, the implementing of it each and every day isn't course ongoing, and we all need to react, not always perfectly body wise, when life makes us do so.

Stop, breathe and think. Thanks

A gardener is a good idea particularly to tame things, do the bigger heavy work. If you like to potter or get hands in soil, can you ' reserve ' part of the garden to be left for you to do, or some pots? So the enjoyment is there without the pressure ?

 

[SBee]

Hi @hope23

Your reply has helped me with the meds mask pain worries I have. Whilst I may indeed need meds to alleviate pain itself, I am conscious that they may indeed dull pain enough that I ( wrongly ) push through and cause further short time or long term damage. That's not something I would set out to do purposely but, yeah,I may do so inadvertently. So you made a very serious point to consider.

I had an phone appt with a rheumatologist nurse yesterday and I will need to go onto drugs shortly ( like you, immune suppressants ) to try to slow the progressive damage inflammatory arthritis can cause. I did ask about pain relief and on her advice I will give this med a good few months to see how it hopefully lessens inflammation and therefore some of the pain too.

I would prefer to be on any additional specific pain relief as a temporary basis rather than long term. But as you say - quality of life.

In my own term, I think of a malfunction in pain receptors makes the best sense for me ?. Particularly when it seems so many with fibromyalgia have additional chronic pain conditions that run along side of cross over symptom wise. In my case, having fibromyalgia seems to intensify existing conditions and older injuries.

I know that findings ways to cope with the varied range of symptoms is very much an individual thing. I I just need to slow down a bit, make gradual changes and learn better to adapt to each day.

I'm not on much pain meds atm, a single cocodamol to help in the morning s, two paracetamol at night and 3 naproxen to help reduce inflammation and a steroid injection given at hospital to help before the immune suppressants arrive.
thanks and take care

 

[hope23]

Hi @hope23

Your reply has helped me with the meds mask pain worries I have. Whilst I may indeed need meds to alleviate pain itself, I am conscious that they may indeed dull pain enough that I ( wrongly ) push through and cause further short time or long term damage. That's not something I would set out to do purposely but, yeah,I may do so inadvertently. So you made a very serious point to consider.

I had an phone appt with a rheumatologist nurse yesterday and I will need to go onto drugs shortly ( like you, immune suppressants ) to try to slow the progressive damage inflammatory arthritis can cause. I did ask about pain relief and on her advice I will give this med a good few months to see how it hopefully lessens inflammation and therefore some of the pain too.

I would prefer to be on any additional specific pain relief as a temporary basis rather than long term. But as you say - quality of life.

In my own term, I think of a malfunction in pain receptors makes the best sense for me ?. Particularly when it seems so many with fibromyalgia have additional chronic pain conditions that run along side of cross over symptom wise. In my case, having fibromyalgia seems to intensify existing conditions and older injuries.

I know that findings ways to cope with the varied range of symptoms is very much an individual thing. I I just need to slow down a bit, make gradual changes and learn better to adapt to each day.

I'm not on much pain meds atm, a single cocodamol to help in the morning s, two paracetamol at night and 3 naproxen to help reduce inflammation and a steroid injection given at hospital to help before the immune suppressants arrive.
thanks and take care

It sounds to me like you are trying to do all the right things you can with the cards youve been dealt. For me the immune suppressants for the ankylosing spondylitis worked wonders and made a massive difference, it was harding getting through the 6 to 8 weeks of seeing if theyd help or not but 100% worth it in the end.

It is one of the hardest things to learn if you were previously(prior to getting crook) a person who just pushed and pushed got stuck in and just got whatever needing doing done. It has taken me a long time to truly learn that skill and put it in practice, dont get me wrong there are still times in which i push myself too far but they are thankfully less frequent.

I really hope the immune suppressants help

 

[SBee]

Thanks so much @hope23 I just got an appt through for end of May to start the meds and learn how to use the injection system. Can't wait.
As you say, they have already said it can take several weeks to really kick in but I've got this far, so few more weeks I just need to (try) to pace better so it becomes the normal behaviour pattern.
Like you, I know there will be times when I take things too far, but in the meantime I'm getting used to this new diagnosis and finding ways to make life easier from a couple of respected arthritis charities.

Thanks for the advice and support I wish you well

 

[sunkacola]

I know this may sound like an old refrain, but for me it has all come down to Radical Acceptance. To me, this means acceptance of EVERYTHING. Unlike the Serenity saying, I also mean to accept the things that I can change as well as the things I cannot change. Accepting everything, leaving nothing out.

This isn't easy. But it means not only accepting the pain, accepting the depression, accepting it when others criticize me unfairly, accepting the days I can't do the things I feel I need to do, and all of those things, but also it means accepting it if I decide to do more than I really should in a day and pay the price. Acceptance means not being hard on myself, not second guessing myself, not blaming myself. Not taking it in if others blame me or criticize me. I make a practice of simply seeing everything as just one more thing to help me to practice Radical Acceptance.

Of course, Radical Acceptance doesn't mean compliance with something that is not right, doesn't mean apathy or giving up. It means just the opposite. I find that the more I can accept as just being what it is, without judgements of Good or Bad, the better I can cope with my daily life, do what I need to do, and take action if something seems wrong to me and there is something I can do about it.

If I need to take pain medication today, I accept that and take it. If I decide not to take it today I accept the pain. If I can't get something done or miss out on an opportunity, I accept that. It gets easier with practice.

As simple as it is, I have found this to be the greatest help in learning how to live, and not just exist day to day, with fibromyalgia. It's not a cure and it's not magic. But, apart from the obvious things like trying to balance life and eat healthy food and get daily exercise, it is the best practice I have found so far.