When pacing is not working

Hi,

Thank you for you're reply.

Its an on going project in reality, but in my head needs to be finished asap, so I can get on with next project. Wrong, not anymore.

Will finish it bit by bit, it's only floor boards, and having the personality I do, why not finish it in a day.

Need to organize my thinking and pay attention to the advise and support I receive from all on this forum.

Hope you are well.

I notice from your reply to Eileen that you have always just got on with it. I was like that too and I find that part very difficult to accept but have had to or I would have struggled even more. It must be more difficult as you live alone.  I can only suggest that you do the minimum you need to so that you can get through the day. If friends offer help don't be too proud to accept. I have friends who have offered but to date I have managed although my husband has serious health problems and is not good on many days. On good days we just do what we can and no one has complained to date. Try to find something each day that gives you pleasure......reading, watching the birds, or just relaxing. It'll get better and I found that hard to believe last year when I was at the stage you are now. Best wishes.

Hi,

Thank you for you're reply,

You so give me hope as all on this forum do.

When you feel like this you can't see that the will be any improvement.

It's a slow process, an enforced stop to my busy lifestyle wasn't something I had even thought about, delusional thought I would be working well past retirement age.

Hope you are well

Hi,

Thank you for you're reply,

I should have taken notice of you're advise on previous posts, thought if I had done very little a couple of days before I would be fine.

I have always had a physical job and been lucky enough to have lots of stamina, and quite enjoyed lifting and moving fixture that my younger colleagues couldn't, just get on with the job was my motto.

I have lived alone for many years and always done diy and garden, it is very frightening to me to think I can't do even the smallest of tasks.

How do you ever accept that.

Hope you are well.

You just have to accept it !!! This is your life now. You either accept that fact, and plan and limit your physical activities, or you live in pain and stiffness (like having concrete blocks attached to your arms and legs). You also will be exhausted from your over doing. As I like to say, "it is just another stage in this thIng we call living."

You were no different from probably the majority of people on the forums - we were almost all active, "darn, if someone isn't going to do it I suppse I'll have to" types. 

Yes, you can "save up" to some extent for the FATIGUE, you can't "save up" for overusing muscles that are unable to work the way they used to. That's like saving the milk on Thursday so it lasts to the weekend - and then having too much on cereal for Friday breakfast

Repetitive actions compromise the blood flow to the muscles, what probably happens is that the supply of nutrients is not quite as good but, more importantly, the removal of waste products is poor. That is the same as you see in athletes, even though they are fit and healthy they can have muscle cramps and then can suffer sore muscles the next day. They have various ways of combatting it but I'm sure you have known people who decided to run/walk a longer distance than they are used to without proper training and who have suffered with sore muscles for days after. The trouble for us is that our muscles aren't healthy and are unable to warn us we have done too much - and then are unable to recover afterwards. 

I'm afraid, as Jeanne says, you either have to accept that this is your new normal and you can't go about things the way you used to or you live with the pain and fatigue, You have to know your limits and stick to them.

We've all had to do it - you aren't the first to make the mistake nor are you alone. Yes, you may have to give up some things but you gain others. I have friends I would never have met without PMR - all over the world. And this summer I met a few of them - they aren't just internet friends.

One way of looking at it is that by you not being able to do some things you create space for others and you can provide a job for a professional who may be in need of work. 

Thank you as always for you're wise words and valuable advise.

The new normal I am finding difficult as I am sure all with pmr do, finding my limit before I do to much I think will be key.

It is early days and I know acceptance is the only way.

The most difficult part of this journey is seeing my daughter's who are in their 30' s they are finding it hard seeing me like this, tearful, immobile some days, and generally miserable.

I am sure like all children you never see you're parents as getting older with health issues.

Feel brighter today although moving slower than a ' slug'.

I hope you are well,

Take care

Mine too are in their mid 30s - both healthcare professionals and the nurse wasn't terribly helpful about pred! She knows the damage it is capable off. That's all changed since her own daughter is reliant on pred to keep her asthma even partially managed - controlled it ain't!

But the resting/pacing bit does help with that - once you get the hang of it you WON'T be immoblie, tearful and miserable. I do all sorts of things - just different things. I've just spent 4 weeks travelling to western Canada and Alaska, followed by a meeting in Chicago. In May I was at a rheumatology conference in Whistler (also Canada for those who don't know). In May Iflew alone - I was fine. 

Very well stated .. your advice is so appreciated .. It has helped me to get a handle on this PMR that I now have to add to my other many health issues. I'm one of the more complicated PMR victims. lol

Hi,

Thank you for you're reply, I have answered sooner, unfortunately another back to bed day.

What you have been doing and where you have been is amazing.

I think is is doing the different things I am struggling with.

Working has been such a big part of my life and this may sound shallow, but 'I am what a do,'well I was, no suit to wear, no meetings and no responsibility, utterly lost.

Mentally devasted, think I need to find a forum for 62 year old who doesn't know what do do with their time. Lol.

I will take notice of you're wise words and all who have replied to my, " pacing not working" discuss.

Take care.

I can relate to what you are going through.  I loved my work.  Well, I loved the being with other people and feeling useful, and the fact that it was a pleasant job didn't hurt.  Retirement has been very hard on me and I daily struggle with the feeling of purposelessness.   PMR didn't help, as it put a kibosh on some of the things I might have volunteered to do - for example helping children with their reading in a local school as last winter I thought it wise to stay away from the litle germ factories.  But perhaps things will be better this year.  I keep reminding myself that Things Take Time, and although time at my age isn't in plentiful supply, nevertheless I'm still moving into the future at the same pace as I always did and slowly getting better.  But there are days when I'm just a constantly upwelling fountain of tears.  

I was self-employed and able to adjust my time to suit me - and I never had the problem of identifying with my work. My husband retired early - he couldn't stand the way the NHS was going, and we retired to the flat we had bought years before in northern Italy. To be able to ski...

So I've had to give up a lot too - we live just at the bottom of our ski mountain - can't ignore it all winter! Even as 60+ PMR-ers we can still do voluntary work and while it may not pay as well as working it is very rewarding. This is just one of 3 forums I participate in, as well as doing some stuff for the PMRGCAUK northeast charity. What you see doesn't just materialise out of thin air and we in the charities provide the founded info, not the woo that is all over the internet. I am also a Patient Research Partner with a north of England PMR research group. That's why I ended up going to Whistler. Others woman the helplines (sorry guys but you are in the minority!) Some ladies discovered handwork skills - and raise funds.

There are many things that can be done, even with PMR.

Julia, when I broke my leg a couple of years ago my younger son happened to be staying with us while he got settled into a new job and found an apartment.  Interestingly he's now the one who spends most time with us, particularly me, and seems aware of some of my challenges, and is helpful.  He wasn't a particularly sympathetic or empathetic person before, but a year driving a truck in Toronto, with his engineering degree getting stale, and then becoming very aware of how quickly a person can become disabled, seems to have made him a much nicer person.  I don't think it hurt him at all to have me clutching his arm when I started walking again, for example.

I feel so much better that I am not alone in my past work life thoughts.

I was thinking about voluntary work in the future.

The thought of doing very little energy wise and my colouring books for company indefinitely fills me with despair.

I know it sounds dramatic especially when there are so many people worse off.

I just have this overwhelming feeling of loss, sounds silly when I read this back, need to organize my thinking, again.

Hope you are well

Hi,

There are many things that I could do, and most of the time I try to be positive, I am a "glass half full" rather than half empty person.

I have couple of days off my feet and feel like I am turning into "a blob" not even dressed today.

Must focus, and with all the support on this forum, won't be hard to stay positive.

Hope you are well

I threw mself into a bunch of volunteer activities after I retired (I was at the time suffering from undiagnosed PMR).  Most of them didn't really give me what I needed, which was soical interaction.  I got involved with one activity I loved, organizing a library for a genealogical society, but politics within the society made it too unpleasant for me to stay.  I now volunteer with the local civic museum and a small art gallery, but neither of these involve much interaction with others.  Mostly I think I just keep a chair warm.  I did look into volunteering at a nursing home, feeling that these people were also probably very lonely.  But there was a requirement to get a flu shot, and at that point I was newly diagnosed with PMR and rather leery of either the flu shot or exposure to all the nasties which seniors in a group home seem to be nearly as suceptible to as children in school!  But when my children were young I volunteered in their school, listening to children read books to me, and helping them along, and I found this a very rewarding activity, so I hope I can do this again perhaps starting this fall.   

sorry for the typos 

It isn't silly - it is as valid a bereavement as any other. It's just most of us here have had a while to get used to it! And while I loved my translating work, it faded away, starting with the financial crisis as companies didn't have money to get it done properly. the company I worked for most has never told me they've stopped allowing work to be sent to me - I just got that decided impression from phone calls. And India does it badly for a price I wouldn't get out of bed for! Or they do it themselves. Badly...

It will take time - but you WILL feel a lot better if you adapt a bit and don't push yourself. Have you heard of the Spoon theory? Someone has mentioned it recently - we can't give the direct link here but google spoons theory by Christina Miseriando. There is also a website called spooniesforlife who also have a facebook page if that is your sort of thing. 

Retirement comes sooner or later for everyone - you have it sooner, because of ill health but not a terminal option and something that CAN be managed fairly well generally. There is much to be grateful for really.

Hi,

You're words are a comfort to me,

I would have retired at some stage, so naive of me to think I could keep tottering around a fashion floor, you don't see people of my age in retail usually, they have more sense.

Must explore other interests and opportunities, and ditch the thought I will work again, suppose I better change my hair colour as well ( it's purple).

I do have a lot to be grateful for and really very lucky with the family I have.

Take care

What's the matter with purple hair?

Though do you know the poem "When I am old"?

When I am an old woman I shall wear purple

With a red hat that doesn't go, and doesn't suit me,

And I shall spend my pension

on brandy and summer gloves

And satin sandals,

and say we've no money for butter.

I shall sit down on the pavement when I am tired,

And gobble up samples in shops and press alarm bells,

And run my stick along the public railings,

And make up for the sobriety of my youth.

I shall go out in my slippers in the rain

And pick the flowers in other people's gardens,

And learn to spit.

You can wear terrible shirts and grow more fat,

And eat three pounds of sausages at a go,

Or only bread and pickle for a week,

And hoard pens and pencils and beer mats

and things in boxes.

But now we must have clothes that keep us dry,

And pay our rent and not swear in the street,

And set a good example for the children.

We will have friends to dinner and read the papers.

But maybe I ought to practise a little now?

So people who know me

are not too shocked and surprised,

When suddenly I am old

and start to wear purple! 

Jenny Joseph 

Says it all.

I love that poem and having successfully embarrassed my children, I have now lived long enough to embarrass my grandchildren by jumping up and down when I unexpectedly came second in a friendly competition. As a child I chose a beautiful purple wool dress but was not allowed it as it was seen as something for old ladies and had to have the turquoise green one. As a 'seenager' I wear lime green, orange and bright pink amongst other colours......not all together! 

I've had purple hair a few times, ripe old age I am    Love the poem :  cheers 

I had a purple dress when I was a teenager - used it for interviews if I remember rightly! I wear bright pinks a LOT, have a pair of lime green linen trousers (now fading though) and bought orange for my daughter's wedding.

I will NOT be beige - I got a beige-ish pair of trousers while in Canada (I wanted white but they were all gone) but it is so I can wear bright colours with them because it does go with all of them. But a beige jacket? NEVER!

Why are all winter things mud-coloured? Except ski-wear. It's dark and dismal - and they give us the choice of dark and mud. On the slopes it is bright and white - so they give us bright colours. Crackers...

I know what you can do with your time, look at the PMR&GCA North East website and see if there is a group near you  - you can join and help out.  Offering an hour or two is gratefully welcomed.

If there is no group near you, how about contacting  PMR&GCAuk or PMR GCA Scotland, or PMR GCA North West and offer your help and perhaps start up a group.

All these charities and groups are run by volunteers and I can tell you that the North East is run by Sliver Surfers - all retired and one on 'overdraft' time.