Thank you

[sampete]

As a newbie can just say how glad I am to have found this forum. I have learnt a lot from your posts now I don't feel so quite alone. My family are great but I know they can never understand the pain and misery when we have a flare and I hate to think that they think I'm just moaning. So thank you to you all for your posts.

[scats]

I can remember feeling the same when I first found the forum. I read a lot and learnt a lot before I ever posted. This is a very valuable resource. So glad you found us.

[DorsetLady PMRGCAuk volunteer]

Welcome 🌷

[PMRpro Ambassador]

Welcome! We do our best - never feel afraid to ask a question about living with PMR or GCA, someone will have been there.

[Marijo1951]

It's difficult for families because once we start the pred and our obvious pain and stiffness reduce or even disappear, they can't understand the incredible deathly fatigue that continues even after pred. Of course everybody feels worn out at times, but most recover after a good rest, and they don't experience the intensity and endurance of the fatigue that plagues us. It is good to have this forum where everybody knows exactly how it feels.

[Arflane97G in reply to Marijo1951]

Totally agree, often have to remind my husband and son that I am actually ill even though I don’t look it and certain things are still really hard for me but have recently invested in a light weight cordless shark vacuum cleaner which is great- just could not handle the old bulky heavy one at all. It is hard though - I do not want to be ill and feel quite uncomfortable telling friends and family tHat I am ill. Take care all

[Marijo1951 in reply to Arflane97G]

I got a cordless Dyson to supplement my trusty but heavy Henry, but the wretched thing has broken on me. I think it's going to be a Shark next. I've heard a lot of good things about them.

[Arflane97G in reply to Marijo1951]

It’s very good, so light and efficient on hard floors and carpets - well worth the money 🙂

[Hidden in reply to Arflane97G]

Does the anti hair wrap thing work? I spend most of my time with a pair of scissors or Stanley knife cutting mine or the dogs hair out of the handheld cordless version made by he who shall not be named but begins with D.

[Arflane97G in reply to Hidden]

No animals so hair not really an issue here so can not answer that one

[Hidden in reply to Arflane97G]

I blame the dog....but she doesn't have purple hair. 😉

[MamaBeagle in reply to Hidden]

Sadly no Poops! My OH sits with scissors and a sheet of newspaper unravelling mine and the beagles' hairs from the roller, and we only have one rug and the rest is laminate flooring!

[Hidden in reply to MamaBeagle]

Ok. Thanks for that. It's back to the tube then.

[borednow in reply to Hidden]

Just about to send a glowing report about my Shark anti wrap cleaner which is pet hair proof, allegedly. Cleaner thinks it's lovely but I've just peered underneath it and then spent 20 minutes with scissors and knife removing dog hair. Hmmmmmmm ...

[Hidden in reply to borednow]

It's getting worse! 🤦‍♀️I have been in the spinny bit of all my vacuums and since pred have picked up even more and longer hair from me. I won't bother spending another 2 to 300 on a shark then despite its promises.

[Joanbill13 in reply to Arflane97G]

I hate telling people I’m not well too. Makes me feel inadequate when I can’t keep up the way I used to

[Joanbill13]

I remember feeling just the same. I think a lot of us do. Family can’t understand. My husband is wonderful but has no idea how I feel.

[Hidden in reply to Joanbill13]

It really is important to have a discussion with people to say I am not sure what I can do from day today, I can't come today but please keep asking. That way you hopefully don't get too isolated. That said there are some people who will never understand no matter what you say. I end up being pushed to do more by some relatives not listening and I end up ill and stiff and in pain for days.

[Joanbill13 in reply to Hidden]

Yes it’s strange how some people do understand and others don’t. “Just soldier on I do”

I’ve just a phone call from my GP on good Friday to say I’m high risk. Which I have assumed being on 7.5 Pred. Still not nice actually hearing her tell me !

[Hidden in reply to Joanbill13]

No, it makes you pause for thought doesn't it. I was 99% sure I wouldn't get away without it and had stopped going out very much before the lockdown. I hadn't been out with the dog for 5 or 6 days so took the dog out. I jumped in the car if anyone was around. Then I got the text so that was it. To be honest, enjoy it because no one is asking us to overdo it whilst this is on!

[Joanbill13 in reply to Hidden]

Do you know I have really quite enjoyed my last 17 days in lockdown. waking up and having nothing I have to do! Don’t have to worry will I feel up to it while I’m tapering 7.5 to 5. If I feel rubbish it doesn’t matter. Have a sit on the sofa watch tv and if I I fall asleep it’s ok. Or dig the veggie patch and enjoy the beautiful weather. Virus has had some benefits. Although of course I’d rather it hadn’t happened. Miss the grandchildren so much

[Hidden in reply to Joanbill13]

Exactly. I have nrices and nephews but having a zoom session tomorrow.😕🤪

[Suffererc in reply to Joanbill13]

I had a call from my GP Thursday to tell me I was medium risk. I only have PMR and currently on 7 1/2 - 6 1/2 pred??????? Find this forum great to be able to say how our symptoms can change. Think my GP thinks I am putting it on and tries to rush the tapering.

[Hidden in reply to Suffererc]

The problem is on the general list of all health conditions from cAncer treatment to diabetes or COPD you may be medium risk despite 1 condition (you may have more just using it as an eg) you are high risk. Some health trusts seem to be more on the ball than others.

[Joanbill13 in reply to Hidden]

My GP rang yesterday and said I was high risk on 5mg / 7

[Hidden in reply to Joanbill13]

The terminology stinks doesn't it. This shielded/high risk/ extremely vulnerable. There's no clear indication if these mean the same thing. I got a further text today from the online vulnerability form I filled in that implies the vulnerability identified for that system, was not the same as being extremely vulnerable vis a vis shielded. Still more layers to the confusion. But Tesco contacted me re priority from the original shielded letters/text system I think.

[Joanbill13 in reply to Hidden]

I seem to be on one list one minute and then not just hoping Sainsbury keep delivering. Assuming now gp has phoned I should be kept on gov.uk database. Happy Easter

[PMRpro Ambassador in reply to Joanbill13]

I wouldn't assume anything!!!

[SheffieldJane]

I remember that feeling and their concern that I was taking steroids, as if it was a self indulgence. Much kinder now. I hope yours learn too. Welcome and stick with us.

[Tawnyowl1]

I too am relatively new to this forum but glad I have found it. I am lucky with the support of my work colleagues who have been very supportive. However it is harder for me to accept that I have to slow down and cannot do the things I want to do. I went down to 5 mg pred but after reading previous posts have gone back up to 6 as the stiffness, that never quite left, has been getting worse. I am still working, ask I am admin in the NHS but luckily not in a clinical setting. Wishing you all the best in your PMR journey xx

[Rugger]

Welcome and Happy Easter weekend.

[Whitner]

Welcome Sampete! You will find this forum very helpful. It is hard for family to completely understand what we are going through especially since we’re able to do something one day then suffer the effects the next!

[Jackoh]

Welcome and happy Easter.

[PMRCanada]

You are quite welcome. Finding this forum 2 years ago was a Godsend! Although most people who are close try and understand, they just don’t “get it” like the forum folks due. We have common ground in our lived experience with PMR/GCA, and as such empathy for each other.

We’ve all had to make adjustments and in the process have gotten quite creative at times. I must say my OH has taken up all of the really physical tasks (vacuuming, carrying groceries, or anything else heavy for that matter, including yard work which we do together). Yesterday he got out the step ladder and washed all the upper kitchen cupboards, emptying the contents and wiping it all down. I will tackle the lower drawers at my own pace.

He sees me at my best and my worst, when I’m thriving and getting back to “normal”, and when I’m in pain dealing with a flare. Because of this I think he is ever mindful of my PMR. Other folks, not so much.

It’s nice that we can stick together and support one another!

[Suet3942]

Welcome to the club nobody wanted to join. You will find a wealth of information and advice on here and wonderful people to help you. Good luck .

[Cyclo5]

Completely agree, it's a fabulous forum, great advice, healthy debate and some brill humour too.