Too much too soon’

[Mgeorge]

I have had PMR/GCA for 3yrs starting at 60 mg prednisone. Year one, I couldn’t get up from a chair, year two, after 3xs weekly gym/swim visits and strict no salt,no sugar, no alcohol diet, I could stand and walk carefully, Year three I’m now down to 3 mg prednisone, after two flares that upped my Pred. I have paced my progress since I have the deadly fatigue. Outsiders are pushing me to take a trip or cruise to improve my life, which has been sedentary these three years. I fear travel as being too strenuous for my recovering body and don’t want a relapse. How do I make outsiders understand that I know my capabilities and don’t want too much too soon!

[SheffieldJane]

I don’t know Mgeorge. My family are the same, as if our diseases are a matter of willpower. So I think, I will do this thing and collapse, and then they’ll see. Often I do the challenging thing, ( with rest on both sides of it) and I am actually ok. There is an element of curling in on yourself. It’s a bit of a gift having people nagging at you to do stuff. Hard as it is to do nice things, we can but try. X

[Rimmy in reply to SheffieldJane]

I agree SJ - about giving it a 'go' if you can - I am in NZ having our first 'holiday' since we were last here in 2016 and (pre dx) think I probably had the initial signs of everything then !! So far managing fine and even managed a small taper. Staying in stunning Wanaka - in the South island where the moon was 'setting' this morning over snow-capped mountains as the sun rose to cast a pink tinge as well. My determined pre-trip low carb efforts a wee bit disrupted by some 'treats' (I adore NZ food) but this is a holiday after all (ha ha !!) Thing is there is never a 'right' time to try to do stuff - but with some pacing it may be possible to have some 'fun' - we all need it !!

XX

[Blearyeyed]

I have just accidentally put an answer to your post on the post from Skinny John , I will move it in a moment , flipping brain fog !

[Hidden in reply to Blearyeyed]

That really confused me 😂😂😂

[Blearyeyed in reply to Hidden]

Sorry can't work out how to cut and paste my answer over to here and the page flipped back to the previous post as I hit reply .

So I will have to write it out again , I am a moron!

[Hidden in reply to Blearyeyed]

Go into edit, highlight and copy/cut.

Delete old message

Open reply to mgeorge

Paste

[Hidden]

Mgeorge, well done for coming so far. Having people push you is never pleasant. If someone hasn't experience chronic pain and fatigue and the general weakness it leaves you in spirit and body wise, they won't ever get it.

I have pushed myself to spend time with family. I do some activities with them but usually 10muns out if an hour. It left me bed bound for a few days but I DID bounce back. But we all have to build our confidence back up in baby steps. I don't know what a cruise takes physically but a lot of people on the forum see to enjoy them.

My advice in the end is just keep building yourself up slowly. Add a couple of minutes to your daily walk but don't keep going away from your start point, i have done that and it taken me an hour to return to start point cos battery ran out and I had to do the 2 step walk . Swim an extra few mins more every time. It so hard building stamina when you start from zero.

At the end of the day you have to do what's best for you and keep setting your own little activities as you have been doing. Good luck. 🌻🌻

[Sho-Sho]

It is almost impossible for ones friends and even family to understand the overwhelming fatigue and ill feeling when one does too much even after 3 years of GCA. I am still struggling at 7.5mg to cope with a fraction of what I used to do and too often having to back out of socializing with friends because I can't cope - one problem is that because of steroids you look, on the surface, very well. I have just learned now to say no and try and live a life that my body can cope with on a daily basis. Holidays are more difficult, my husband and I are going on a cruise in November and will probably just enjoy all the amenities on the boat and not do the trips when we are in port and just enjoy it as a hotel - bit of a waste but very relaxing and it won't spoil it for the friends who are coming with us.

Look after yourself and be strong!

[Soraya_PMR]

“Year one, I couldn’t get up from a chair, year two.......I could stand and walk carefully”

Do you have other medical problems? One would have thought that the PMR body aches/stiffness would be negligible on GCA doses of steroids.

[BonnyQuine in reply to Soraya_PMR]

Hello Soraya

I've had GCA for 2.5 years, starting on 40mg pred. My 'fitness story' is much like Mgeorge's. There's the deathly fatigue throughout, which is hugely debilitating. (I never had the initial burst of 'energy' that some people experience on pred - was just totally knackered from the start of GCA (before diagnosis) onwards.) Then there's the steroid myopathy - muscle weakness which is extremely bad on high doses, has just the effect that Mgeorge describes, and which I still have until now (5.5mg), though gradually lessening. I think the effect is cumulative. So, these are the problems. Takes enormous will-power to do anything at all.

I do also have steroid-induced diabetes. Also have assorted aches, which had all been masked by the pred until recent months, including what I'd thought was an arthritic hip. But a recent x-ray suggested that the pain originates from problems in the lumbar spine. Whatever, that slows me down quite a bit, too.

During the last year I resumed attending a choir and a 'brush up your French' group, but haven't felt up to much else. Am going to start physiotherapy soon, to give me a start - fingers crossed. Must say, I quite like the sound of Dancingrosie's Norwegian Cruise - might consider that - next year.

[Dancingrosie]

Hi a MGeorge. Just wanted to say I felt the same as you and just didn’t feel I could face going away. Just the flight and airports was a no no . So we decided maybe a cruise? I checked it out and we went from Southampton to the norwegian fjords. Wow. Amazing. Didn’t do any tours except one to walk on a glacier. Just chilled the whole time and felt totally relaxed.

[Blearyeyed]

It is hard to make people understand that although coping mentally with having to spend alot of time in your home , or using all your energy on getting better isolated from social activities is hard and frustrating, it doesn't mean you have become mentally withdrawn and you're capable of making your own decisions.

Unfortunately, many friends and family members do see you withdraw from activities, and , despite the fact that you try to explain that it isn't because you don't want to join in on social things but that you have to get physically fit to do so again , they still don't seem to get the message , or think you are making excuses because you have lost confidence.

It's not that they are inconsiderate or unsympathetic ( well most of them anyway!) it's just that they have never had a Chronic Pain condition that restricts mobility .

They just don't understand that , unlike with other illnesses , getting better isn't a matter of Will , or trying , or pushing past it , ability to take part is the obstacle.

Obviously, in some cases mental obstacles and isolation may be a factor , it often happens with certain types of illness that people are more used to seeing their friends suffer from , like Cancer , or Mental Issues like Depression, so they get concerned and are probably just trying to do what is right to support you the way they think is right.

But , if you have been honest with yourself and asked yourself the question:

" Am I staying in now because I still need to or because I am scared of a Flare or being ill again and that is stopping me?"

And the answer is because you feel you still need to , then that is your choice and you shouldn't have to keep justifying it to other people.

At the end of the day , being politely honest with them all with a kind and open smile is all you can do.

Tell them , you understand their concerns but you are happy , you are alright , and you are just limiting your activities for a while longer because you are more interested in continuing to get better and stronger than having a holiday at the moment.

Explain , that although your choice might seem strange to them it is what you need to do , you see no point in having a holiday you know you won't enjoy and that could be quite uncomfortable for you.

Let them know you wouldn't be doing it to make you happy , you would only be going to make them happy and with your illness you need to put your own needs first for a little longer.

Explain you would prefer to wait to spend money on a holiday at the right time when you can celebrate getting on your feet again.

Ask them to understand , but even if they don't , tell them you need them to respect your decision and not discuss it anymore.

You could tell them about the things that you are doing to improve , and , even come up with a list of things that you are planning to do in the future that you really want to do showing why you want to keep up the work on getting better rather than taking a trip that might push your progress back.

If some of those things are activities that include them all the better , let them know , if they see you have a plan and that you are actually not isolating yourself for no reason they will be able to accept your choice more easily, and will leave you in peace to get well by on own terms. They may actually find a way that they could be more useful in helping you achieve your goals and you could end up getting closer too.

Keep strong , it sounds like you have had a hard road with PMR , but you should certainly be proud of yourself and how far you have come .

Hopefully , you friends and family will see how proud they should be of you too .

Hugs and good luck , Bee x

[Dancingrosie]

Forgot to say I have Gca and PMR and have it 31/2 years. Started 50mg now 3mg after a couple of flares. Still get fatigue. If you do cruise get a balcony and if you don’t feel like leaving cabin sit and order meal and they will bring to cabin. Bliss

[Longtimer]

I can understand what you are saying, we bought our son and his wife a cruise to Norway for his 50th birthday, they have been back a couple of weeks. It was a trial run for me (their first cruise as well)as well he said to see if they thought I would cope.....well they were amazed at how very simple it was, they said when they got into Southampton carpark the cases were taken out of the boot by whoever, and they were right in front of the (big beast) cruise....walked through a near empty terminal and that was it....greeted with a a glass of champagne and were so amazed at all that was available and how restful it all was. Someone on here did advise getting a balcony room and did they, in case you just want to sit and admire (sounds good to me) (they went to Norway)..and of course they said I could just rest whenever in the lovely room, or the wonderful sky lounge....the attention from the staff they said was unbelievable, as was the food....so I`m thinking they have sold it to me...and they do know my limitations...deadly fatigue at times....(at 8mg and lowering soon I hope)

I hope I haven`t rambled on too much, but thought I would tell you in case a cruise was what you were considering....

[Janann25 in reply to Longtimer]

I'm off on a cruise from Southampton. Taxi to and from port, suitcases taken care of - they just appear outside your cabin - gentle stroll through terminal then onto ship - just lovely. After many years of cruising with my late husband, I'm a bit nervous but I've got a balcony so I can just "switch off" if I want to. There's nothing better than sitting on the balcony with the ocean stretched out in front of you - it feels like you could be the only one there. So, do try it, I'm sure you'll enjoy it.

Jan

[Longtimer in reply to Janann25]

How wonderful, I have no qualms now about the actual cruise...son still waxing lyrical about it!...but living in Norfolk the trip down to Southampton is the worst part now I think. Cruises do not in the least interest my husband, and is happy for me to go with my sister who has RA and lives alone, and is worse than me muscle and pain wise. MY son went the night before, because a few weeks earlier the M225 had a 3/4 hour hold up, and cruises do not wait. He has offered to take us and stop how many times we need to, but if we went the night before, and then collected us...what a hassle for him...just wish they still went from Harwich...no problem! Sorry to ramble on, I hope you have a lovely holiday, and a good choice to get a balcony to just sit and watch the world go by,.....I`m relaxed already thinking about it!

Post when you get back.....

[PMRpro Ambassador in reply to Longtimer]

If he is offering - accept gracefully. People don't offer for nothing - if they weren't happy to do it they need not say anything. Going down the night before means he doesn't have any worry about holdups either. Remember - it is more blessed to give than receive and he has already received from you.

[Longtimer in reply to PMRpro]

Thank you , yes I agree, I only hesitate because he is an engineer and has to travel a lot alfeady on our horrendous roads....but I will get it arranged.....

Hope you are feeling better?

[PMRpro Ambassador in reply to Longtimer]

Getting there!

A few more hours here or there on UK roads is not a big deal when you travel a lot - I speak from long practice ...

[Longtimer in reply to PMRpro]

Thank you, watch this space!...

[Hidden in reply to Longtimer]

I agree with pmrpro. Accept the offer of transport that fits around your needs. That's lovely.

[bunnymom]

What it comes down to for me, when family seems disappointed in my progress,,I hear you aren't doing good enough,,, you are sick because you aren't trying hard enough. No one is actually saying this it's the voice in my head. What in the world did I do to bring this life sucking sickness on and how do I escape? I have to change my self talk and remind myself my poor body is fighting an invisible foe every second and I will do all I can to help her till she's well. 😘

[Blearyeyed in reply to bunnymom]

That's it , it's asking yourself the questions honestly , listening to the truth not the pressure ( from ourselves or others) then sharing the answers with everyone else.

I want to do more but is it good for me , will PMR let me try ?

Am I only doing this because people want me to or I think I need to when I want to be doing something?

It's a lesson that PMR forces us to do but has a silver lining for the future because it teaches us to search for a good balance in our lives rather than frantically trying to fit too much in our lives.

Have a great weekend x

[Hidden in reply to bunnymom]

The voice in your head needs to be reminded to leave you alone sometimes. As you say your family aren't saying that to you. I tell my internal commentary to take a break and stop picking on me!

It's hard for families. After almost 20years of different problems, its only in the past few years my extended family have understood there is no quick fix. That sometimes when i get back on my feet, another health issue can slam me down. They just worry and want to help most of the time.

I am very lucky I have no dependents/partner (by choice), otherwise I suspect my "bad" voice...otherwise known as feeling guilty and frustrated, would get much louder. I need the head space to be content. Every week or two I ask myself where I am on my happy continuum. Its usually an 8. Can go to 6 or 7 for pain etc. And has been at 0 a few years ago. But I have been trying to learn to like, and enjoy the little things....like the quiet and relaxing sit I had, with a stressed out friend, at the side of a reservoir watching baby ducks and my dog in the water. She ignores them and won't go within 20ft of them even if she sees them. My friend seemed much better afterwards. I really loved my oven roasted med vegetables with very well done halloumi that I finished a while ago. I watered my vegetable "garden" and I am going to sit now and watch a replay of today's stage of the giro d'italia. I used to ride my stationary bike along with the grand tours but can't do that now/yet(?). Got rid of it to stop the mourning. Sorry....went down a little yellow brick road in my head. But I will leave it posted. 😃

[BonnyQuine]

Hello Mgeorge

I've had GCA for two and a half years, and have experienced just the same as you. See my reply to Soraya.

I'm down to 5.5mg prednisolone - so we're on a parallel course.

I'm not sure how you make outsiders understand. People always say "Oh, you look so well . . ". I have to restrain the urge to punch them on the nose, and just say "Oh, it's the steroids. They have a deceptive effect." But I do use a stick to assist walking, and people can see I'm not leaping about.

I often wonder if I could do more if I tried harder, but that feeling of exhaustion is hard to overcome, and motivation is a problem.

The trouble with not joining in with things is that you tend to become a bit isolated. Quite a few 'friends' just can't be bothered, if you're not going on outings with them, I find. But I agree about not wanting too much too soon. You just have to stand your ground. Doing 'nice things' is only 'nice' if you feel up to it. You don't have to justify your decisions - it's up to you. Just thank them for their concern, and say no with a smile.

Onwards n upwards.

[Rimmy]

I can understand your trepidation and how people don't understand you feel unwell when they just 'look' at you - we all know that isn't a very accurate 'test' of what is going on - BUT and I am saying 'but' despite all this as I also know it can become too 'easy' to slip into a 'rut' or repetitive cycle where we feel nothing will ever change and it is harder and harder to do anything differently.

You sound like you have been very determined over the years of PMR/GCA and that is to be admired and I see you have now tapered to 3mg !! I am coming up to a similar period of having PMR/GCA and after a flare I am still on 14mg and tapering quite slowly back down. I am also - as I said to SJ - now on a holiday and doing things which I wouldn't normally take on - but I am feeling determined to get on with it. Half way through the month or so we planned to have away I am feeling pretty good and a recent cataract op I had just before we left has healed up really well and i can 'see' some lovely things !! Yes - I have had some intermittent problems and wish I could walk up and down some of the sloping walks without quite so much huffing and puffing - but I am generally OK.

I know we are all different and 'deadly fatigue' is truly awful - but I took this all on regardless of what 'might' happen as I needed a change - a 'reboot' and so far so 'good'. So if you do get the inclination it may end up doing you as much good as any possible harm and you might find you are now capable of even more than you think. I am sure you will recognise that window of opportunity when it comes your way - and hopefully it will be soon !!

Best wishes