What when there is NO solution?: I spent 2 hours... - Headway


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What when there is NO solution?

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I spent 2 hours 4 days ago doing clay modelling = loved it and time flew. BUT: didn't realise my neck was bent, didn't think = derr, that it'd hurt bad after. SHOULD have thought coz spent ONE hour like that unravelling wool with charity & neck so bad after. And typing. And bending it cutting veg, cooking, washing up etc.

So here's my question: I LOVED doing the clay and model not finished yet and would like/need to try finish it BUT = the pain after = days, a week = SHOULD I do it? Do I WANT to do it now knowing I'll get that pain after = and makes me MORE tired etc.?

Can't raise clay higher to not bend neck to see/look = coz raising my arms higher = way too tiring and BAD pain now too right top arm/shoulder where injured it when fell many months ago (date?) = think end summer/early autumn? Numb and new nerve damage there and pretty sure NOT 'rehab' that it hurts worse now = think saying STOP, rest me.

So then people wonder WHY we stop doing things,find excuses, lie around. Same fo garden = I like doing it but BAD for neck, back and knees.

Always on my knees now (especially THIS place, far more here than in my old home, especially kitchen doing my bag = NEVER did that in my home coz kitchen table - always did it there and here no space for my kitchen table/chairs.) And new hard patches on knees and more twitches there = NOT good.

So clay modelling = another thing tried, liked but can't/shouldn't do? SO sad. And NOTHING else is the same, can't make up for not doing THAT.

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Don't give up darls, just shake it up a bit. Clay model for a bit, try and remember to stop for a bit and move your head side to side and back and forward. Raise your arms and get some blood flow back, try an ice pack (really helps with neck and back soreness). Rub your neck and shoulders and do shoulder raises to release the tension. If like me you forget, stick some notes on the wall to remind yourself to stop and rest.

I did the same as you when I discovered knitting, painting, sewing and colouring helped me centre and calm myself. The pain made me almost stop, but I just shook things up and did little and often made sure I rested a little in between different activities.

please try not to be so hard on yourself (says the queen of being hard on herself lol). You are doing great and you need to stick with the crafting xxx

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Hidden in reply to Jennaberri

Thanks Jenna, I'll try to think, remember and learn, see what works.

Lost loads of muscle right side back neck = tried foamy neck thing BUT my front neck & throat damaged in op too and it presses and hurts. So can't use.

I try not to be too hard on myself but feel useless failure so much of the time.

I empathise with your pain. I have got super involved in a project and not noticed my position until I try to move... and then found I couldn't.

I am fortunate in that I was able to design my own craft studio space (converted spare room) and I have included work surfaces at varying heights for certain tasks.

Other things I have done...

I have purposely put things where I need to get up form the main work table and move across the room to use them - this ensures I get up and stretch every so often and that really helps.

My family got me a portable lap work station so that I can sit back in an armchair and carry out small tasks.

I banned all non craft liquids and snacks form the craft space - this was originally because I am clumsy and a spilled drink can spread way faster than I can mop it up...but I found it was useful because it meant I would get up and go and get a drink every now and then.

I have other health issues besides my BI and these have meant that long ago I had to adapt to doing things differently when I had severe pain or immobile joints. I have an assortment of pillows and cushions that I can use to support my arms and I have gel rests for the edge of my work table (as I have at my computer desk)

I set up a raised gizmo (cobbled together from cardboard tube on a base with some clips) to hold things while I work on them...particularly useful when painting a 3D object because it holds the item in place and I do not need to hold my hands/arms up for long periods.

A lot of things I use are made by me rather than bought because not only are they are cheaper than manufactured options but they are fairly simple/ easy solutions to meet my needs.

Wheat or rice bags are great for crafting woes too... you can use them to rest tired arms and also heat one in the microwave and drape it around your shoulders to give some relief as you work.

I don't know if any of these things may be helpful... I hope the pain settles soon. If you are able look for solutions rather than giving up on the things you enjoy.

Take care

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Hidden in reply to iforget

Tanks iforget. I have (I know) to try learn to try things, try manage. Easiest is prevention but that's tricky.

Pain's there ALL the time (and ever will be I think = unless any treatment possible so long after). As you know it's SO wearing.

You sound so capable, courageous, creative and clever. Feel like I've failed, my adaptations not good enough.

Even sitting long is hard on my body, left hip awful after those times of lots of art. Can't do it lying down flat - even PC tricky like that and hurts neck+.

I'll try...

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iforget in reply to Hidden

Muddled I had years to figure out my general workarounds and by the time I got my BI my house had been adapted for physical issues and we have worked on adding in when needed...but we don't always get it right first time... There have been some spectacular failures here too...

I don't think I am any more capable , courageous, creative or clever....I am however stubborn as a mule and hate to let things beat me. The road to solutions is not always as smooth as I may have made it sound.

Hang in there - you will find your own workarounds .

If you think a time alert might help meds reminder can be used...no ticking. You just have to remember to set it up...and take note when it beeps.

Hi muddled

Not being a great crafter myself I don't know how much practical help I can offer.

The only thing I can suggest and it works for my reading and crochet is to set an alarm for a Max of 30 minutes before you start anything you know you can get absorbed in.

Take care

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Hidden in reply to randomphantoms

Thanks Random, yes: think you're right, alarm and stop. But SO hard when in middle of something and creative spurt!

And the days roll by SO fast and I never achieve much let alone enough.

maybe try stopping every 30mins and stretching etc? use a egg timer?

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Hidden in reply to RogerCMerriman

Thanks Roger, yes, I must buy one (if it doesn't tick = that'd be annoying!).

Always, always do stuff. But recognise that managing fatigue is tricky and requires a whole life approach.

Try thinking of yourself as a mobile phone with a dodgy battery: it drains too quickly and doesn't recharge well when plugged in.

This means it is no good doing something for a couple of hours...you will be flat even if you try and charge up again. 40 minutes is about my limit. Sometimes it can work to keep running for longer if you switch off one side of the brain and turn to the other instead for a while - so do something creative for half and hour, then switch your activity to something physical, then to something mental.

Understand that everything you do is an 'activity' - even sitting is a yoga asana, and rightly so with that heavy head requiring to be balanced on a Jenga style tower of vertebrae. Then you want to extend your arms out and wiggle your fingers constructively as well? It's no wondered you are knackered....Emotion is an activity, and negative emotion is particularly draining. You have heard that thing about it taking more muscles to frown than to smile....well it is right, and consciously making an effort to think positively is, in energy consumption terms, less draining than the least conscious negativity.

Every now and then, to keep you able to keep on, you need to plug in and recharge. Your phone will tell you to shut down apps when you plug it into the wall, because you can't recharge efficiently doing stuff. This applies to us as well; you need to stop, sit, or preferably lie down but that can be a bit tricky at the bus stop, shut your eyes and focus on your breathing. You can do this for 5-10 minutes several times a day almost anywhere and it just revitalises and refreshes enough to enable you to do the next thing, whatever that is.

It is true that we 'are what we eat', so managing diet can have a huge impact. Things which are fresh are closest to life so have more potential to keep us alert. Even before I became ill I used to do an annual month long detox - no processed food, no wheat, no dairy, no grains...essentially fruit, nuts, seeds, and lots of water. It boosts your metabolism. It probably isn't healthy as a long term plan but having an awareness of how food affects your mood and energy (which are, as noted above, closely connected) is really helpful too. It is a bit like putting the wrong battery in the phone and expecting it to work.

And lastly, sleep: Whenever I leave my phone at homeI start with a bit of a panic. Once I have got used to the idea though I find it agrees with me, I settle into this comfortable place where I am not at the beck and call of everyone who can reach me usually thanks to that little machine. I switch off. And slerp is really hard when your brain is or has been under attack, but it is key to getting that proper downtime where the brain can have a go at restoring itself. And of course, each night brings with it the ordinary miracle of the new day, such a gift, such a delight.

If you google CFS (aka ME, CFIDS) you will find lots of stuff on managing fatigue. The ME Association are particularly useful.

But as I said to start with, this is a whole life change, and the process of change is a whole life one too.

So dont expect answers overnight. The dawn wont be bringing them...

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Hidden in reply to malalatete

Thanks Malala, all you say is very sensible. I already try to eat well - living mainly on salads! Better at that routine now = prepare it after breakfast before too tired.

My home is too hot summer and too cold winter = added mega stress on body/brain and extra neuro probs.

Your flat battery description is GOOD, thanks. I know I have to try learn DO all this but as you know = VERY tricky and extra work.

Have done bit better on sleep sometimes (after art) = coz blocking out (a bit) all the AWFUL stuff I'm trying to cope with but aren't mostly. TERRIFIED of too-hot again, unbearable last year = complete breakdown for nearly a month coz NO quiet or proper sleep.

Trying to muddle on but loads of panic attacks = DREADFUL and feel very nauseous. When psychiatric nurse (2006) gave me info on these I looked at him, questioning coz had never experienced those and didn't know why he thought I had = he didn't ask oddly. All this replays year after year. Try block out but pop into my brain at random times. And NO: not my choice and YES: I try to block out but can't always. WHY should I have to try? Need to hear/discuss THEIR side of story to get real peace and be able to put those memories away better, tidy or tidier.