Pacing

[Fyllida]

Wonderful idea. But what on earth do you do when you’ve had a fair amount restful stops and coffees, as and when needed - all of which take an unpredictable amount of time, and the pain meds stop working and you can’t take any more for a few more hours. When its impossible to bolt home to bed with a hottie.....

[BadHare]

It depends what i’m doing. Some things are worth being floored for weeks afterwards, so often planning ahead helps me cope with any aftermath.

[Fyllida in reply to BadHare]

Can’t think if anything which would compensate being floored for weeks. I still resent being floored for days!

My problems began so suddenly...within a week of being an active, optimistic person to an agonised semi-invalid. Just cannot, cannot, accept it and so push on and on doing the stuff, making the plans and being defeated. Its a horrible roller coaster of a life. Maybe, in time, my brain will work in tandem with my body. But the dread of getting old, needy and in pain is driving me nuts. Like two people battling within, and knowing that neither is going to win the war.

[BadHare in reply to Fyllida]

Usually days out, weekends away or holidays. It's a blessing & a curse that some days I can do things I used to enjoy, but always at the price of what comes after. I get frustrated with pacing, & sometimes bored enough to do things I shouldn't,

[Fyllida in reply to BadHare]

So the same, BadHare, and still beating myself up about it. So many members have sensibly managed a philosophical attitude. How do they do it, I wonder.....

[BadHare in reply to Fyllida]

Stoicism works for me, & the hope that bad days eventually turn in to less bad days, followed by me overdoing things again.

I use acupuncture & acupressure to help, as well as stretching exercises. I keep warm, & appreciate long soaks in the bath when my boiler's working.

[Fyllida in reply to BadHare]

I’ll have a go at being a Stoic, but when it doesn’t come naturally as it does to many (particularly men......here we go again!), it is an incredibly sane and grown up way forward.

Devotee of acupuncture, though. Somehow the pain disappears for hours after appt. adore that pre-med whoosh! Still waiting for it to accumulate, though my accupuncturist promises me it will. Ah well.

Just started CBD oil, but that takes a few weeks to know.

As to overdoing things, only human and on “good days” the euphoria is fantastic. How not to overdo things, even if we are well aware of the “punishment”!

Off to get out the Epsoms. The cold tap has conked out so have to pace the damn bath too!

Do keep in touch. X

[BadHare in reply to Fyllida]

Stoicism seems the only option simce s**t is always going to happen!

Acupuncture keeps me off stronger medication, & also helps me mentally. It's a rare day that I don't needle or use acupressure for pain or stress, & only ever positive side effects. This might be of interest: acutakehealth.com/acupressu... Hope whoever you see is a good'un!

I followed another post re CBD oil, & may give that a try soon. It's good to have something to fall back on, though I prefer things fast acting which It won't do.

Enjoy your bath! I always find it stays hot longer once it;s heated up, A bit like warming a tea pot. x

[Fyllida in reply to BadHare]

YES! Great, thanx so much, BadHare. Are you doing your own needling? Every day? Where would you pressure for lower back pain? Yeah, my accupuncturist top-class gal.

Like you, I want results YESTERDAY! Unfortunately, fast fixes end fast, dammit.

[BadHare in reply to Fyllida]

You're welcome!

Local points are good for lower back pain, also Bladder 60 & Kidney, 3 ~ either side of the ankle bone, between the achilles tendon, & bladder 40 between the two tendons at the back of the knee. Large Intestine 4 is good for any pain, as is Liver 3.

I needle weekly, unless I'm in a bad way, & do acupressure on other days, & sometimes use a moxa box with smokeless moxa. I hate having to get someone to needle around my scapular, where I can't needle safely, but found an infra red lamp rather good for that, as well as my lower back. It was under £20, & I'm thinking of getting a bigger one to do my whole spine & shoulder at the same time.

A good massage trick is to tie two tennis balls in a sock, & adjust the knot to get the balls at a distance to the paraspinal muscles, then work it up & down the spine for several minutes, leaning against a wall. You could also use a ball to put pressure on Kidney, 1, if you can't reach your feet.

[Fyllida in reply to BadHare]

Hello again. Re acupuncture, love it but for some resson my last experience was awful. As I got off the bed, the pain was excruciating. That bed was one of the really hard ones....like a rock,, and it has affected me badly. Was getting on not too bsdly before, my pain just starting to be manageable with various techniques etc. Hope the damage is not permanent, but its five days now and am so upset, feels like back to the beginning, so be aware, fellow sufferers, of the problems these “beauty” beds can do.

[BadHare in reply to Fyllida]

Hope you feel better soon!

Maybe ask your acupuncturist to pad the bed next time so it's not uncomfortable for you.

[waylay in reply to Fyllida]

It takes time. It took me about 2.5 years. One day the pain consultant told me that we'd tried everything, and there was nothing left (somehow didn't get into pain management that time). Went into a severe depressive episode. Then my surrogate Mum/friend/housemate got sick. I helped her, took care of her here and there, searched around for things she could manage to eat.... I wish I'd done more. It turns out that she had terminal colon cancer, which had metastatizised to her liver and stomach. She died 10 days after she was diagnosed. Horrendous.

Took about 6 months before I could think about anything else. That's when I realised: she's dead, way too young. I'm in pain, but I'm still alive. I've been in limbo for 2.5 years, searching for a cure, so I can get back to my old life, but that's never going to happen. What I need to do is accept that and start building a new life. Not staying in limbo anymore.

It's not easy, and 7 years later I'm still dealing with grieving my old life, but I have moved on. At least, during the breaks between benefits assessments I do. *Sigh*

[Fyllida in reply to waylay]

Thank goodness you have finally moved on. Your experience is truly terrible. Acceptance, being realistic is hard. My pain manager also told me there was nothing more he could do except surgery. The surgeon was reluctant, he knew the op wouldn't last, I believe. Well, it didn’t but have not quite given up. Its tiring exploring different avenues and depressing. I cry a lot from pain and frustration. But you have to hope and hubs like HU have been incredibly helpful. Am so grateful for all advice and sympathy, its wonderful to share. Keep positive and I wish you the very best, waylay

[waylay in reply to Fyllida]

Thanks

I have good times and bad times. Still working on it,

I know what you mean. You just keep looking, hoping for something... It's so hard to accept that we can't be FIXED.

Good luck to you, too. I hope you find what you're looking for, or at least reach a point of acceptance. Have you tried a pain management programme? Incredibly helpful for me. Doesn't change the pain, but teaches you ways to cope with it, to live with it.

[Sammicat15]

A tough one. I've been at this game over 20 years and can still get it wrong!

Sometimes focusing on the task in hand gets you through the next hour, then the one after that. Gritted teeth all the way. I use caffeine, heatiewheaties, skin gels and painkillers with alternated timings to get through. However, do that often enough and it will lead to collapse. The devastating aftermath means you have to try and prioritise your challenges or change the circumstances in which you live. The workplace is difficult and depends on how large a company you work for. I had to change jobs after 13 years of struggling with a husband in denial, not offering the support I needed, often not even a cuppa when I couldn't lift a kettle. Do you have a supportive partner to ease the burden at home? Do you have children? It all impacts on how we conduct ourselves to get by. There is no easy answer. If you can afford it, hands on therapies might work for you. They did for me but sadly are now out of my financial reach.

[clairehope]

a lot of what sammicat has said resonates with me. I think learning to be kind to ourselves is a hard journey, learning to let other people be kind to us is a trip up Everest! It's an invaluable tool in pacing yourself.

A good friend said that I needed to stop being so selfish. I was very hurt and became quite angry and upset. When I calmed down she was able to clarify. I have always done things for other people, volunteered, cooked, cleaned - anything and everything. There's no denying that doing such things makes us feel good. She pointed out that the people I have helped for years would feel good about helping me. So I have gritted my teeth and learned to let both friends and the strangers who offer to help do it.

The difference in terms of pacing is MASSIVE, so I would say make sure you're using every bit of help, even if accepting it is uncomfortable at first. Xx

[Fyllida in reply to clairehope]

It is so hard when, like you, have spent most of my life unselfishly to the best of my ability, the beneficiaries walk away when we obviously need some assistance ourselves. In turn, those people can become selfish and blinkered, posdibky embarrassed. We didn’t do it as an insurance policy and not expecting sainthood on either side, but compassion is slowly being eroded in midern society.

[clairehope in reply to Fyllida]

I think some people are embarrassed and fearful that an offer of help might seem patronising. I get political about compassion. When we have a government portraying those of us who need compassion and kindness as lazy scroungers some people will inevitably decide that it's okay to be vile.

Anita Roddick, speaking of all the world's problems said "What is needed is a revolution of kindness".

[Fyllida in reply to clairehope]

Oh I think because we are now in such a sensitised condition, that we can detect genuine compassion from the transparent do-gooder.

(One clue have always noticed : “I don’t know what to say”. The genuinly compassionate always know what to say.......), from the heart.

[waylay in reply to clairehope]

OMG THIS. A few months ago my partner told me, "You know, part of being generous is learning to accept the generosity of others. We wouldn't offer if we didn't want to help. We care about you. It's kinda hurtful when you always say no." Sat there stunned for a few minutes. Working on it now. It's so hard. Like you, I was the one who helped others, the volunteer, the caring friend. I had worked really hard to make sure that I was completely independent in every way, that I didn't need anyone (weird childhood). Now, suddenly, I do need. A lot. It's so hard to accept....

[Sheila-Squirrel]

Sometimes you just have to be catotonic and ask for help. I break tasks down into smaller chunks. I got myself a hot water dispenser so I don’t have to lift a kettle. It’s helped with making coffees. I have more energy to spend drinking it 🙂

[Fyllida in reply to Sheila-Squirrel]

Good idea! As a bonus, fibd caffeine helps, or stuns, the pain!

[Sheila-Squirrel in reply to Fyllida]

I don’t get dressed if I don’t need to. I have a wash, brush my teeth and hair and then sit for a while to plan my day. Have you seen the Pain Toolkit Booklet? I’ve put a link on my profile.

[morphalot in reply to Fyllida]

The only trouble is that caffeine is also a diuretic!!

[Fyllida in reply to morphalot]

Yeah, I know. NOW have to find cafes with a loo! Grrr.

[johnsmith]

Pacing is a name that often does not pay enough attention to how the body is designed to do things. It is a get out clause for the Health professional who cannot be bothered to help you explore how to move and how to determine what type of injury you have.

Certain types of pain are heavily influenced by sleep and the way you move your muscles. Ensuring you get enough sleep is not pacing. Working out ways to keep your muscles moving smoothly and without tension is not pacing. It is something else that is left out of coping with pain instructions by the medical professional.

The Brain controls muscles. So the brain needs to study and observe how you do things. You need to develop sensitivity so that you stop what you are doing when you detect the point when your movement could injure yourself.

There is something called a stress breakdown point. Below this point every thing functions even if it is badly. When stress is above the stress breakdown point things fall apart. So there is need to work on the little stresses to reduce them so that you can reduce the overall stress. The big stress is often untouchable hence the need to work on the little stresses. Lots of little stresses add up to a large stress.

Hope this gives food for thought.

[waylay in reply to johnsmith]

Fascinating! Totally looking that up!