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Sleep, Precious Sleep…

September 15, 2012

I have had some sleep and PROPER sleep – not tranquiliser induced (no temazepam since Tuesday)! Last night I actually slept from 1am-6am without even going to the loo – FIVE whole lovely hours.  The night before I slept too… I’m thinking the steroid taper is helping – now I’m on 12.5mg it’s not having such a powerful insomnia effect.

Life is so much better with sleep.  Yesterday I saw some friends for the first time in months, I put on some make-up, I put on a dress and I felt human!  They both said how well I looked, and actually (if you forget about the medication) I’m living a healthier lifestyle than I ever have – I’m not smoking, not drinking, eating lots of fruit, cut out chocolate and crisps (apart from at the weekend when I treat myself), so maybe I do actually look better than I have for a while.

I am noticing some changes this week.  The aches and pains and twitches I had been living with (and got used to for so long) have returned.  I hadn’t really realised they had gone until now when they are coming back.  This makes me realise 3 things 1) That I have obviously been living with this chronic illness for a while 2) That the aches and pains have bad a cause 3) That the steroids have actually been doing something.

Now I’ve had a chance to think about my ‘whole body’ it has made me realise that the rheumatologist appointment that I was due to have in September/October has never materialised.  I remember after my last one the reception was closed and the nurse took the booking form, I think this booking form never made it to the booking desk. This causes me anxiety – I need to see the Professor to get my MRI results and discuss the general plan of action.  I have noticed this happening a few times when my appointments have lasted longer than the reception desk is open for, the next appointments don’t get booked – this is a problem with the system and it’s very frustrating. I will have to do some chasing on Monday 😦

Anyhow, let’s see if I can go and make the most of today seeing as I have some sleep banked up for it!

  1. Just wanted to drop you a note and let you know that you aren’t the only one out there going through something like this. The steroids, the medication, the doctor’s appointments. It’s awful. Keep hanging in there!!

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