Feeling despondent after rheumy nurse appt

Starburst

I vowed to eat healthily but after my appt, I decided that I needed a small homemade fairy cake (bright yellow buttercream icing with smarties!).

My clinic has 2 nurses and I got to see the really lovely one who always remembers things about me. She was kind and lovely but the overall message always leaves me feeling a little down. I always go in with this completely irrational hope that they'll suggest a new medication or something that might miraculously change my life. Then, I hear that this is about as good as it gets and I ponder on the fact that I'm only 24 and hope to live another good 60 years or so. I wonder what the future holds for me and I feel a little afraid. I try to tell myself that medicine is advancing all the time and not to lose hope but it's hard knowing that it's not going to get much better for the foreseable future.

I really needed to get this out to people who understand that I've lost my positivity but that appointments leave me having a little wobble.

Thank you for reading.
Sophie xx

tillytop

Hello Sophie

I got halfway through typing a reply just now and then it disappeared!

Will reply properly later (hopefully).

Thinking of you.

Tillyxxx

7worlds

Hi Sophie. I always feel that way about appointments too. You get a wee group of butterflies in your stomach even though you know what they are probably going to tell you. I think its the spirit of human nature that makes you hope for the best. You will find a way through it somehow. Be strong.

7worlds

valval

we do go in hoping for a miracle but often there is not much they can do for us and that does play with you head but you have a life in front of you and you will make it a good one you are a positive person and you will not stay down it good to have a good look at your life and work out what you can do to improve things we are here when needed ((())) val

tillytop

Hello Sophie

Right, see if I can get to the end of this post before it disappears again :roll:

I am so sorry you feel so down and despondent after your appointment. I know from experience that it is very easy to get your hopes up, and very difficult when it doesn't turn out the way you hoped. I'm sorry that I can't remember your situation and what meds you are taking, but from what you have said, I'm guessing that you were hoping for more from your current meds? Did the nurse have anything to say about this - did she feel the meds were sufficient or did she give you any idea of alternatives you might be able to try in the future? If not, I wonder if it would be possible to try to have a conversation with her to tell her how you feel after the appointment and to see what she can suggest? You say she is a lovely nurse so I am sure she wouldn't mind you phoning.

Please know that you are not alone in feeling like this though Sophie.

Thinking of you.

Love Tillyxxx

bubbadog

Hey Sophie, Tilly is right! I know when I go to the hospital there's all ways that glimmer of hope that something good will come out, but as soon as the doctor opens his/her mouth they extinguish all hope of that. But we wouldn't be human if we are never optimistic so don't feel despondent.
I've lost count on the amount of times I've heard the 'this is as good as it's going to get for you' speech I've heard from doctors & Consultants. I think I've become numb to it because since I've had Osteo-porosis I've managed to go on cruises, go to pop concerts, I've even went to the space center in America and enjoyed that as much as the able bodied people! So if your about to hear the ol' as good as it gets speech block it with la la music in your head because your life can be furnished with whatever you wanna do, where's there a will there's a way!!

desjumeaux

Hi Sophie

I agree with you that any sort of cream cake, specially those with thick bright icing on top helps. Magnums are good as well.

So sorry you are feeling down, I think we all feel like that after an appointment.

I know its hard but try to stay positive, there are lots of people on here who know just what you are going through and all are very supportive.

Sending you my goodest wishes and bestest love
Chris

Starburst

Thank you for the support. I knew I could count on you! I'm back to my normal self today. I woke up and told myself that it was a new day and repeated my new motto; don't let what you can't do interfere with what you can do!

I'm on 20mg injected MTX. I had bad reactions to sulpha and hydroxy. I don't quite qualify for anti-TNF as my DAS score is always slightly under. I'm not too keen on pushing for them either as I seem to have suffer quite bad reactions to a lot of medications and feel quite lucky that MTX has been an acceptable drug for me. Rheum nurse said I can talk to my consultant to see if they can get me on one of the newer drugs. I have a few months till I see her, so time to mull over what I want. For me, it's a careful balancing act - RA symptoms vs. medication side effects. Gosh, that was a long ramble!

xx

stickywicket

Sorry I missed this but I'm glad today's better for you. I used to think that 'this' med (whatever it was) had to work because there wasn't anything further to take but good old medical science kept coming up with new stuff just before the med I was on stopped working for me. And surgery kept getting better and better too. With luck, they'll keep one step ahead of you just as they have done for me.

bubbadog

Glad you've woken feeling more positive and a clear understanding of what you want and how your going to approach it. We all slip into bad days and just need that little positive nudge to help us back on to the positive road. Keep yourself busy for those few months before you see your Rhummey consultant. Just remember your in the right place to get the support you need if you need it.