Hi all, just wanted to maybe pass on some positive thinking and give some of you some hope that things will improve ?
Last xmas i couldn't cut my turkey, couldn't pull a cracker,couldn't wrap or open presents. I couln't sleep with the pain and shuffled rather than walked. I was at this time on methotrexate, hydroxychloraquine and sulphalazine ( along with all the pain killers etc) and awaiting my 2nd assessment for anti tnf which i have now been on cimzia for 10 months now.
This xmas I wrapped a few presents wearing my splints, pulled a cracker, cut up my own dinner and felt that I helped a little in the kitchen too.
I failed on the pacing so now am completely exhausted - but I knew that would happen- still finding pacing the hardest part !
So to all of you having to go through the awful part of trying new drugs, giving them chance to work and then find they don't just make sure you tell the people that make the decisions about your treatment the real picture - no brave faces, no hero's- just say it like it is because they cant feel the pain, they cant see the exhaustion and frustration which is all part of this horrid condition, they don't see how we struggle with every day things and they need all this info as well as the swollen hot joints which they can see and feel to make the move to use new drugs and treatments.
So to all of you ,especially those come on here and rant and rave in despair, don't apologize, keeping doing it,use us as a practice and then go for it at your next appointment - remember it may not always seem it but the doc's/ nurses are on our side and want to see us improve BUT they need to see it as it is from our side of the fence.
So here's hoping that a lot can look back a year and can see some positives and those that cant- well maybe 2012 will be your year, xx