When other people's opinions Count

[cycli]

Well, it's a few months since reducing pred gradually. It's 3 years since diagnosis and a few years more suffering this condition unknowingly. It has to be said that Prednisolone does have serious consequences over time in larger doses, but it also enables us to function. I have lost a staggering amount of muscle and fitness but I am feeling better. I have lost the fat face and the large stomach is slowly going. I cannot sustain efforts for long and my lower back doesn't like sustained work. That said everyone without exception comments that I look better. That I walk with more certainty and that I sound like my old self. Just how bad I looked and projected alarms me, but I am now grateful for their comments. I can only conclude that I am on the up. Here's hoping. I hope this helps others trying to decide whether they are on the mend.

[Twopies]

good news, much needed, I might add. What dosage pred are you on now please?

[cycli in reply to Twopies]

3.5mg Twopies and reducing today to 3 mg

Wifes birthday today and our wedding anniversary.44years.

[Twopies in reply to cycli]

Oh my gosh! Celebrate! Sending warm wishes to both.🇺🇸

[PMRpro Ambassador in reply to cycli]

Congrats on both counts!

[Bcol in reply to cycli]

Many congratulations on both accounts.😊😊

[DorsetLady PMRGCAuk volunteer]

Good to hear -long may it continue. Congratulations to both of you.. many more happy years to come 😊

[cycli]

Thanks to all. Fingers crossed that I am on the mend. With wife 3 years before we married. I'm eternally grateful that at least one person lives who has the patience to tolerate me😄The main thing is that there is hope and it pays to be optimistic. Maybe it is a false hope but still better than none.

[Viv54 in reply to cycli]

Great to hear,best of luck x

[Sophiestree]

Love a positive post.... great to read.

[Bcol]

Brilliant to read that things are going in the right direction.

[Broseley]

So good to hear you're on the up at last! May ut continue! And happy anniversary!

[abby78]

Glad things are going better for you. This can be a long and discouraging process.

[Pr0jection]

Good news that you are feeling and looking better. When I was first diagnosed I remember walking into a coffee shop where friends were waiting. One of them said "you look awful". You can imagine what that did for my confidence. Not a lot!! All the best

[DorsetLady PMRGCAuk volunteer in reply to Pr0jection]

Makes a change from “you look well” when feeling rubbish I suppose !

[PMRpro Ambassador in reply to Pr0jection]

That's the sort of friend you DON'T need ...

[Pr0jection in reply to PMRpro]

Absolutely!

[cycli in reply to Pr0jection]

When you haven't seen someone for a year and they say how much better you look from the last time they saw you it's much the same. I've come to accept this as a positive though. It's a measure both of how you have improved as well as making you realise how bad you were. at least they are the sort of friend you can rely on to be honest if somewhat tactless.

[Pr0jection in reply to cycli]

Yes, completely understand because after I'd been on pred for about 3 months and was feeling a whole lot better, another friend said how much better I looked from the last time she saw me.

[Mfaepink1973 in reply to Pr0jection]

In a way you were lucky to “look awful” at least you would have got some sympathy. I’ve always looked fit and healthy even when PMR was at it’s worse before pred. I’m sure people thought I was exaggerating or making it up when I said how much pain I was in so have had little to no sympathy even from family!

[cycli in reply to Mfaepink1973]

I don't think it is important to expect sympathy. Heaven knows, this goes on for so long that even the best intentioned friends would get tired of sympathising. I don't want sympathy, I want people to try and understand. We aren't feigning it when we say we aren't up to doing something. Just because they can't see the loss of muscle leading to serious weakened ability or feel the aches and pains preventing effort or mistake looking well not translating into being well. The affects it has on the muscles performing properly and the side effects of medication needed to control it are other invisible outcomes. Because we put a good face on it doesn't mean we don't want to scream out at what we have lost. They can never know that feeling without experiencing it themselves. None of us would wish that on them so it's a wonder that we can make the effort not to show that.