New month, new page

It has been a relief this morning to finally turn over the page of the calendar to June.  May was so busy that just looking at the list of appointments and events was tiring.  My illness is still such that even nice things, seeing friends and family, sitting on a friend's horse, going out for dinner or to the cinema, are often accompanied by a little flutter of panic in my stomach about whether I will cope. Will it take too much out of me, draining the all important energy reserves?  And what about logistics - how much walking is involved, will I have to stand up for long, how will I get there if it's beyond my driving limits?  And all this from someone who once thought nothing of riding and competing on top of a demanding full time job.

I've found that having nice things planned is really important, even if they are a little daunting.  Everyone needs something to look forward to, but especially to break up my monotony of home and appointments.  The psychological boost often lasts longer than the physical recovery time.

I have no hospital visits scheduled for June or July and hopefully it will stay that way!  On Thursday I had my regular appointment at the sarcoidosis clinic at the Brompton.  They're going ahead with applying for funding to Medway PCT (or its current incarnation) for infliximab. It is used commonly for other autoimmune conditions, Chrones and rheumatoid arthritis, but its a fairly new treatment for neurosarcoidosis.  I should know by the time I have my next appointment there at the end of August.  Fingers crossed!