Scary Things, Big Bangs, Birthdays, Ronnie and Reggie.

When did life become so serious? This is a question I have asked myself over the past month or so and to be honest my answer is….it never really was. I think we all get caught up in the whirlwind of life and forget, as usual, the important things.

The past week in the UK has been a fiesta of festivals with Halloween and Guy Fawkes night. I have manoeuvred my way through little witches and fake fangs to excited children running through the house to catch a glimpse of the night sky lit up with multi coloured lights that sprinkle as they fall to the ground. It has reminded me that the most important things are the moments in time that create memories. I have many special moments through the years but more recently I have taken time to stop, breathe in what is happening and then store it in the part of my brain that is for the most precious of memories.

I know, in advance, that this weekend will be one of those moments. Boo is going to be 8 and what with her news this year we have allowed her to have a Cookie cooking party. So, this weekend I will be tip toeing through, dough, glitter and icing. To top that she is the proud new owner of two guinea pigs, Ronnie and Reggie, more chores I think. I am sure that at some point I will have to excuse myself, wipe a tear and blow my nose. But I need to make sure that I do not smudge the “Chef” moustache that I have to apply as per Boo’s instructions…..I promise photos will follow.

I have now settled in at work and think that everyone is more comfortable with my appearance. People have started saying hello and given me the opportunity to prove that despite the exterior I am still the same old me. It’s almost like old times. I have found myself in the “naughty boy’s” corner with Phil, it’s brilliant fun J I had to giggle when I learned the fire alarm went off and to my buddy’s dismay they realised there would be no running with me full speed in the chair with my silver blanket as I had already gone home. There will be another time for the “Batman” moment I am sure J

Ok, on to what I suppose is the real news…my HUVs.

Well the numerous meds continue with a probable addition. My brilliant consultant, for those who are wondering I am being sincere, has decided to try me on meds that haven’t been used on HUVs before. He has to go to the hospitals governing body for permission but has no concerns regarding permission as we have exhausted every other medicated avenue. I am currently on 9 different forms of medication, this will be number 10. This one will be a different sort of medication and could be quite trying but I will cross that bridge when I start. I am in mixed minds about whether I want it to start sooner rather than later because of the Festive season fast approaching…..But looking completely on the positive side the meds have allowed me back to the land of the living…...though it maybe a case of hair today gone tomroow?!?!?!?!

I am now up to 10.5 hours per week so not far off the magic “15”. I feel that it is amazing when you consider that only 2 months ago we were still worried that I wouldn’t get back at all…..I know that in previous posts I have mentioned the importance of working with your place of employment when off long term sick. It has really helped my return and subsequent placement on my return. It has made the transition all the easier. This coming week I am using Access to Work to get there. This is where the government help towards journey costs to and from work. This will prove invaluable as we have been paying for taxis. It is a really easy process, well it is now I know what I am doing, so if you have any questions please post me.

A lot of you have said you have tried to leave comments and are unable. If this is the case please message or text me and I will copy and paste your thoughts onto the blog J

Once again I want to thank everyone who takes the time to read the blog and especially to those who have taken the step to be a follower. The condition is extremely rare and I feel privileged that I have the opportunity not to only educate you guys but also to support others in the same boat.

Just as a last comment I wanted to let you know that I have had had over 1200 people view the blog, from all continents, which is amazing and definitely spurs me on to continue writing my inane comments…..

The picture this time is of Roxy, my beautiful constant partner in crime and Ronnie and Reggie, Boo’s new guinea pigs who joined my crazy family today, bless them…..

Until next time

Sarah ©