You all are awesome

[Hali12]

Im so blessed to have such caring people. I will call my doc today. And I’m so glad to see that I’m not alone. Being on this group has me understanding. Please again I do want to apologize to you all. I hate to let people know what I’m going to thru. But from now on I’m going to to be more in-depth with what I am going thru. At least I know I’ll get answers and there are people out there who Truely understand what I’m going thru. Also my hubby is with me but not as the understanding as you all have been. He is so frustrated with me and my aches and pains. I know I shouldn’t bring this on. But I just wish he would understand my situation. Please don’t get me wrong I love him. To the end of world. But it is getting harder and harder to talk to him or get him to understand my pain. I know what you’re probably saying go see a counselor. That is the last thing I need to do. With what I am going thru. Please again I apologize for being frustrated and helpless. I want to have my life back. So anyway. That is what I have so far. Peace out. Will most definitely keep you all informed. THANK YOU 🙏 ALL AGAIN YOU ALL ARE ALL AWESOME 😎

[SheffieldJane]

That’s really lovely Hali12. Part of what binds us together is that nobody understands what this is like unless you have it. It can be made better and be “ normalised” to an extent if we just keep supporting each other. The experienced people on here have taught me so much that I find talking to doctors begins to feel more like a partnership.

I also prefer to be the helper rather than the one who needs help, it’s hard to make yourself vulnerable. I have learned that this really is a safe space, populated by angels. 🌸

[SnazzyD]

Ah yes, other people not understanding. Many have that problem, especially with friends and family who become frustrated because they don’t know what to do and it’s not an easy fix. The trouble is, they can’t know how you feel unless they’ve had to go through this and you probably look fine too.

[DorsetLady PMRGCAuk volunteer]

Hi Hali12,

Much as we dislike Pred, it is the only thing that will control your inflammation and your pain. So you do NEED it.

Have a look at attached, and let your husband read it too, it might help him to understand a little better - not completely, but enough perhaps to realise what you are going through.

healthunlocked.com/pmrgcauk...

[Grants148]

Thankyou Hali,we are always ready to listen and to give you support .lt is so difficult to explain to our friends and family how this illness affects us,we may look perfectly well but they just do not understand the pain we are having to cope with,even when the steroids help a great deal there are side effects .Please keep posting,l have found this forum so helpful and supportive.

[Rugger]

Hi Hali12, that sounds like you're beginning to accept the situation. We've all experienced that feeling of grief when being diagnosed with an illness we don't want and to be in denial is part of that grieving process. It's also 'normal' to feel angry and depressed at times, but hopefully at some stage to accept that this is the way it is, for now.

Your hubby will feel frustrated, because he can't ease your pain - it is hard when you love someone to see them in pain. However, if he reads DorsetLady's information and maybe Kate Gilbert's book, he won't have to hear it from just you and it may help you as a couple on this 'journey'. My hubby read Kate's book and now 'lectures' me when I do too much, or if I get frustrated that I can't do more!! (As recently as last night, when he came home from work and I said I'd not done much all day, so felt 'guilty' - I got told firmly that I must get rid of those negative thoughts, as they were not helping my recovery!) Anyway, that's us and all relationships are different.

Lovely to hear that you're going to stick with us and do let us know what the doctor said.

[SheffieldJane in reply to Rugger]

Well he’s a keeper Sue. 💘

[Rugger in reply to SheffieldJane]

I hope so, Jane. Don't get me wrong, we have our 'moments', but next year will be our Silver Wedding. Who'd have thought it, as I was 46 when we got married?!

Thank you for the heart - I wish I knew how to do all those lovely emojis.

[SheffieldJane]

Google how to do it with your particular machine. I’ve got an iPad and there is simply an icon on the keyboard. 💡