new horizons..

[scoobydoo1]

well guys quite a lot has happened since my last post. Since my upgrade of painkillers to codipar (15/500) cocodamol my pain has plateued so im in pain all the time now, spasms have as reported reduced dramaticaly since being took off the folic acid, been having more cases of where i feel i cant talk/ mouth tired and generally more nackered

but on the plus side I saw my occupational health doctor yesterday who was very receptive and interested in lupus, I think when he commented about all my bloods appearing to be ok and i countered his question with my illness diary, blood results, appointment letters and information from you guys he said ok, i cant argue with that. so now have to go back in 4 weeks for a review, my boss had a good chat with me and has changed my work patterns, I was working from 7am- 8;15 pm twice a week and a shorter shift to make my 30 hours, now working 4 days, shorter hours and on the obs ward where its not as hard going, but still lets me do what im good at looking after people.

nice to have the oportunity to educate people about lupus, its helped me and hopefully will help other lupies get treated more appropriatly in my department, so onwards, hope you are all well, if not my thoughts and hugs go out to you. mark

[pattismith]

Great to hear you are doing well , just show's it's so worth to learn about our conditions and be able to speak up for ourselves when necessary, keep up the great work , and well done for being so positive :)t

[Silvermyst]

That's fantastic Mark, so pleased for you. Its so nice to hear something so positive in respect of being taken seriously at work, so often not the case. Yay for you, well done for hitting them round the head with your evidence LOTS of positive thoughts coming your way! Sam

[Purpletop]

That's good - a responsible employer. I'm sorry it isn't sorted out yet for you but hopefully all will calm down soon. How are you feeling about the change in work hours? I was gutted when I had to stop working and still am that I can't do what I used to do anymore. But health is paramount, know that. Good luck, Mark!

[scoobydoo1]

thanks guys, hopefully when i get my rhumatologist appointment will move even further, mike my gp has actually sent my illness timeline and diary electronically so they can have a good read before i get there, good hey.

a for work, im still doing 30 hours, well I had accrued time for staying late teaching etc so my boss has allowed me to use these hours to shorten my shifts even more, i am still able to work, i have proved that i am not stupid and know when to stop certain things like trying to put canulas in people when i am twitching also i am still on my department, with my friends and colleagues who know what has been happening, they have seen it and had to look after me. When I had my first flare years ago I had no idea what it was, how long it would go on or if i was dying but i got through that with not much support and carried on and got what i wanted my nursing career and a job in a/e, which i still love nearly 12 years and god knows how many little flares, and this annoying 8 month one later, now I have a realy good idea what im fighting and am getting an army of support from everyone online at work and all the medics so, lupus may have slowed me down but it will NOT beat me.

[Hidden in reply to scoobydoo1]

absolutely love your positive attitute, please keep it going for us lupies that are going throught the flares and hard times at work. Reading your post as giving me a positive insight to this week. For me, I'm now working 26 hours Mon-Fri in a less challenging and boring role. I've applied for another role within my organisation but I don't think my manager wants me for that role due to my flare ups and time I have to take off work. Had an internal interview for this role and waiting the outcome which I will find out today. I just feel so defeated already...thanks again for the post.

[scoobydoo1 in reply to Hidden]

glad that my journey is helping others, always stay positive, seen it too many times where people lose faith and there illness progresses very rapidly. every crappy day your here be thankfull because there are others who arent here any more. life is prescious, and in our case a bloody hard slog so always try and see the positives.

[roobarb]

Great news scoobydoo. It sounds like you have taken a big step in the right direction. Long may it continue. X