Trying to do it right, getting it all wrong.

Apologies for my self indulgent posting recently. I'm not in a good head space. Trying to get my head round all of this, do the right thing (whatever that is) please everyone (trait left over from childhood. I hear my mother's voice "come along, pull yourself together 😠). My recent counselling seems to have blown away on the wind over the Needles.I started on 15mg, felt 😀, told to drop to 12.5 after three weeks, felt 🥴, went back to 14 (doctor wanted me off it pdq) then down to 13.5. Never felt right, symptoms always lurking. Tried ignoring them 🫣 Due a review when we get back. No better than at diagnosis.

What would you advise me to do? Wait, stay at current dose , increase dose back to original, go for a long walk on the Military Road .....🚶....🤔

[Hidden]

Just realised this is a repeat of a post made earlier 🙄 Oh dear, think I'll just go back to bed 🛌 ignore me 🙊

[DorsetLady PMRGCAuk volunteer]

We did advise in previous post to go back your starting dose until you see GP on return from holiday. … but maybe just switch off forum for a while and go for a potter- not a long walk… or read or just sit and have a coffee somewhere quiet.

I think you have too many things going round and round in your head and you are confusing yourself. 🌸

[Hidden in reply to DorsetLady]

Yes, you are right. This is how I get when my ASD decides to take over. I will take your advice before I become a pest.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I was thinking of you, not us. We’ll always reply- but sometimes there is too much for you [or any new patient] to take on board.

[SnazzyD in reply to Hidden]

A old friend of mine with ASD will worry at something in order to get enough data to make the way clear or before he acts to make sure it is the right thing. He finds it difficult to stop and can get himself into an exhausted heap of growing overload with still no clear answer. This is problematic when it happens to concern his body because as we all know, there is a lot of hand waving, guessing, supposing - No certainty whatsoever! No matter how many professors he spoke to, scientific papers he read and asking a friend, he couldn’t know what the outcome would be. He reminds me of someone 🙂

You have a holiday to appreciate (albeit more limited right now), you have a marvellous drug (albeit with drawbacks) and a bunch of people here when you come back. Work it out with the GP when you get come.

So, perhaps sooth that child by resting and looking at clouds or the sea and give it a break from expectation. As Hidden says “down the hatch” with that 15mg!

[Hidden in reply to SnazzyD]

Thank you 🥹, that old friend of yours does remind me of my 11 year old, recently diagnosed, grandson with autism (and possibly his granny too).

[Hidden]

Are we talking Housesteads or are you referring to some soft southern modern Military Road......😜DL has a point, you seem to be getting yourself in a tizzz ;15mgs down the hatch daily and see how you go.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

On the south western side of the IoW …and it’s an old one - dates back to 1800s..

wightpedia.org.uk/w/Militar...

[Hidden in reply to DorsetLady]

Mine runs just below Hadrians Wall.....approx 100 AD......straight , fast and no lorrys! Will look up the history of the IOW one, seems an unlikely spot for such.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Why? Had a military presence for donkeys years… naval and army..,

en.m.wikipedia.org/wiki/For....

[Hidden in reply to DorsetLady]

Presumably to see off the perfidious French?

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Amongst others!

[PMRpro Ambassador in reply to Hidden]

Thought the Spanish wandered that way too ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

They did…

[cema in reply to DorsetLady]

I live on what you on IOW call the mainland! Across from Portsmouth there is another military road, also along the coast forts, different eras, Also near Portsmouth is a lovely hospital (QA) with ward windows looking over the Solent. Have you managed to get an appointment with their Rheumatology team who have looked after me for years. They recently booked me a phlebotomy appointment .when the gp said not needed. For Dorset my Brother, also RA and other arthritic problems, I think had a good GP but was attending a hospital in Bournemouth. No idea what is available on the Island. Best of luck, Carol

[DorsetLady PMRGCAuk volunteer in reply to cema]

Don't think you mean this for me, I live in Dorset - although I do know IOW well, and Hampshire, even better -born there. . LittleJane is only on holiday on the IOW, she doesn't live there either.

[PMRpro Ambassador]

Well, maybe not the long walk on the Military Road when you're this fatigued anyway!!! DL's suggestion of a quiet corner and a coffee sounds a good one. Or a nice cake or icecream ...

[Angelsmummy]

You are NOT a Pest!The problems you are experiencing/feeling are real,so much to take in ,wondering if you are doing right,everything builds up and magnifies.Try and enjoy what is left of your holiday,plenty of time when you get back to sort things out.Holidays don’t come around very often and you will kick yourself when you get back and realise what should have been a wonderful time has been marred by worry.We have ALL been there and sometimes still are.Please listen to the WISE ONES on here,they know their stuff.YOU ARE NOT ALONE!xxx❤️🌼😜

[Hidden in reply to Angelsmummy]

I know, I was having a self pity party yesterday. I did far too much and today can do nothing so I'm not. I increased my dose back to 15mg this morning. One of my sons sent me a lovely supportive message this morning 🥹

[Angelsmummy in reply to Hidden]

Self pity party??We all need them sometimes on a bad day.Glad you have listened to THE WISE ONES!Lovely that your son sent you you a supportive message.Relax and enjoy the rest of your time,probably too cold to go for a paddle eh?😱😱🌊🏄🏼‍♀️🤣🌼😜xxx

[Hidden in reply to Angelsmummy]

🥶

[Angelsmummy in reply to Hidden]

☕️🍵🍫Best treat yourself to some nice comforting food then eh!xx🌼😜

[Hidden in reply to Angelsmummy]

I've already been mainlining sugar, not a good idea, but there's only me here 🙄

[Angelsmummy in reply to Hidden]

A couple of squares of dark chocolate won’t hurt,,but you are on holiday,TREAT yourself,it ain’t going to kill you !🤣🍫🍫🍫😜xx

[Rugger in reply to Angelsmummy]

I have 25g of dark chocolate every single evening as my 'afters' with a cuppa! (Aldi bars are individually wrapped 5 x 25g, so there's portion control! 🤣 🍫 ☕ - "other brands are available".) Just realised I buy 73 packs a year 😱 - I'm worth it! 😉

[Angelsmummy in reply to Rugger]

Wow!What will power!I would eat the lot!If it ain’t there,I can’t eat it!Been very naughty last couple of days,eaten a small Mr zkipling slice and 3 biscuits before bed been SO good for weeks,wonder if it is adrenals now I am down to end of 5 and 1/2 mg taper,or am I just catching up on depriving myself for so long?Hope you are well Rugger..xx🍫🍫🌼😜

[Rugger in reply to Angelsmummy]

I think that because I have the chocolate 365 days a year, it becomes part of my normal food intake and that really does change my relationship with it, from something to be "naughty" about, to just "this what I have". We don't have puddings* and I drink alcohol very rarely, so this is my treat. I don't "deprive myself" but the individually wrapped bars certainly help! 😉

*In case my friend reads this - I made a blackberry and apple crumble last week from a Bramley off her tree with wild blackberries, but I think that was probably the first pudd since Christmas.

I am keeping quite well thanks. I'm on 3.5mg after 8 years and I get very weary if I do too much - I blame that on my adrenals. I'm having a sit down now, after a fairly busy day so far - trying to practice what I preach and pace myself!

PMR: 2016

GCA-LVV: 2019

[Angelsmummy in reply to Rugger]

Glad to hear it!Do you reckon my sudden sugar cravings might be adrenals?Maybe I am kidding myself eh?Real glut of apples this year,3 Bramley apple trees .Not had enough energy to fill up freezers as much as last year.Done quite a lot ,and I like to eat it just as it is just stewed .Still weary after 8 years!That is shocking!Poor you..Time of the year when it gets colder that the comfort food comes to mind.Hope you didn’t eat all the pie?xxx🤣🌼😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Do you reckon my sudden sugar cravings might be adrenals?

Think that might be wishful thinking… 😏

[Angelsmummy in reply to DorsetLady]

Damn it!Perhaps I am pregnant then!🤣🤣🤣🤣🤣🤣🤣😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

I hope not! … 😳

[Angelsmummy in reply to DorsetLady]

Nah,no way,would be another immaculate conception!😱🌼

[Rugger in reply to Angelsmummy]

Please don't worry about me - I've not been weary for the whole 8 years! 🤣 I don't know if it's adrenals, but they're good to blame - maybe it's just that I'm 8 years older! 🧑‍🦳

We made the crumble last 2 meals and I'm going to stew the other apples to have on our muesli! Lucky you with 3 trees. I grew up with one Bramley tree. 🍏 Dad put a swing on one of the branches.

[Angelsmummy in reply to Rugger]

Aaah,I’ve just been told by DL that it is wishful thinking that my sudden awakening of craving sweet stuff isn’t Mr Adrenal.Guess I am going to have a bit more will power .DAMN IT,really wanted to blame it on something other than me!Enjoy the rest of your pie!YUM!xx🥮🌼😜

[Hidden in reply to Angelsmummy]

I'm a bit confused about what I shouldn't eat. Don't eat too much sugar. Don't have caffeine, cut down on carbs, no white flour.........As someone with IBS and an eating disorder I don't know which way is up 🤔

But I do love all veggies and fruits that don't upset me 🍆🥒🫐🍉🍅🥕🥔🫑🌶️

[Angelsmummy in reply to Hidden]

Wait for PMRpro or DL to answer you,they are the experts.With IBS obvs lots of things upset you,just a question of getting the right balance I guess for your situation.Hope you feel a little more settled now with the higher dose of Mr Pred?xx🌼😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Not an expert on IBS nor any eating disorder I’m afraid… have a very robust constitution 😏

[Angelsmummy in reply to DorsetLady]

Ah,that’s cos you are a country gal!x🌼😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

True!… can’t say it all down to clean living… minor understatement there… 🫣

[PMRpro Ambassador in reply to Angelsmummy]

Same here - very little upsets my gut!!!!

[Angelsmummy in reply to PMRpro]

Yep,lucky you,quaffing all that gelato!I can eat anything acidy,but a bowl of custard or cream and UGH!Yet I can eat youghourts !Strange.So PMRpro,are you going to confirm for me that I cannot blame my adrenals for my craving sweet stuff for last 3 days after weeks and weeks of being not really interested ?🤞🏼🤞🏼🌼😜

[PMRpro Ambassador in reply to Angelsmummy]

Er - above my pay grade!

[Angelsmummy in reply to PMRpro]

Well,I am either pregnant or just a greedy 🐖then!xxPS are you glad to be home and is the weather nicer than it is here at present?x🌼😜

[PMRpro Ambassador in reply to Angelsmummy]

Now you being pregnant might raise some attention and fundraising opportunities!!!

Sort of, mixed up feelings. When I got back to power off (no idea why) and a thawed freezer it then promptly snowed 3 days later!! Not here in the valley but it wasn't far away. It's been foul up here, consistently 4 or 5C cooler than it should be and wet, we had 3 inches of rain in 3 days last week! I went away with the camper last weekend, much less cool in the low valleys but still cloudy and not what it should be like. We never get more than a few days nice at a time and the forecast is consistently inaccurate so planning anything in advance is hopeless.

Today was glorious - but barely above freezing first thing. I got the bus up to a higher valley and had lunch and a glass of wine in the sun but you had to be in the sun. At 3,10 it went behind the mountain and the temperature plummeted from almost too hot in short sleeves to not really comfortable in a fleece! I suppose it was about 13C air temp but a slight breeze and without sun you really felt it. So like quite a few others - I retreated as the bus was 15 mins later and the next was an hour later.

[Angelsmummy in reply to PMRpro]

Oh,shame ,I had visions of you in your bikini soaking up the rays!🤣Hope you didn’t lose too much food after the thawing out of your freezer.?So unpredictable the weather now,seasons aren’t seasons anymore.When I was a kid,winters were snow ,summers were HOT,now they all seem to blend into one,As for fundraising,maybe all of us on the forum could put some ideas forward ?MUST be some way to put this damn disease to the fore? Xx😜🌼

[PMRpro Ambassador in reply to Angelsmummy]

Three drawers full, meat including venison, duck and lamb, smoked salmon. various bits. Didn't smell TOO bad, but fully thawed so had to go.

[Angelsmummy in reply to PMRpro]

Shame,meat and fish ain’t cheap either are they!Nice homecoming.x🌼😜

[PMRpro Ambassador in reply to Angelsmummy]

Not the quality they were!!!!

[Angelsmummy in reply to PMRpro]

Glad I don’t eat meat then!But even fish portions are getting smaller and smaller and price is going up and up!Might have to get my fishing rod out and fish my pond!x🤣😜🐟

[PMRpro Ambassador in reply to Angelsmummy]

I'm very picky about my meat - no supermarket stuff, a butcher with identifiable provenance although though I trust them and don't look. Except lamb here - the local Spar does UK lamb chops!!

[Angelsmummy in reply to PMRpro]

Yuk!xx😜🤣🌼

[Hidden in reply to Angelsmummy]

Felt giddy this morning. Feel more awake and less achy this afternoon thanks 🙂

[Angelsmummy in reply to Hidden]

Glad to hear it,just take it easy and remember YOU ARE ILL!xxx🌼🌼🌼😜

[PMRpro Ambassador in reply to Rugger]

Aldi chocolate in the UK is ace!!! My daughter was emptying the shelves to see if she could find more salted caramel bars in August. No idea what they sell here ...

[cema in reply to PMRpro]

Ocado do salted caramel milk drinks I think, online but if you are desperate!! I can't get out so online Ocado mostly main shop.

[PMRpro Ambassador in reply to cema]

No use to me - Ocado don't deliver this far ... Italy ... Almost no online food shopping here.

[Purplecrow]

hi, I’m sending you a giant virtual hug! Just because you are you!

👭let’s hold hands and walk together for a while👭

[Hidden in reply to Purplecrow]

🥹 thank you, I love crows. Back home there is a murder who nest in a huge oak tree just beyond our garden. Their community fascinates me

[Purplecrow]

I have a visitor named “HeyBird”. He visits each morning for his handful of dog kibble. Often his noisy kids accompany. Cacophony reigns🙂

[Hidden]

I know, they all shout at once before swooping off. Reminds me of when our three children and four grandchildren get together 🤣