MND can get in the sea

In the weeks since the last blog, we've been busy doing some really worthwhile and positive things, but unfortunately in the days in between, I have been feeling very sad, frustrated and annoyed with my situation.  We will start with a positive – I received the results of the biopsy I had taken of my nose.  I had a persistently bleeding area which looked suspicious of skin cancer, but the results came back as sun-damage only and since having the area removed, I have had no further problems.  This is a relief as it was liable to bleed at every knock and when other people are getting you dressed, they may not always remember to take particular care not to touch it with jumpers etc. Another positive came in the form of a parcel from John which contained a signed Derby County FC shirt!  As Alice took the photo of me holding it up, she noted I was already wearing a Derby top and scarf, so this really completed the look! So, although there is plenty of good, th...

I've had a fortnight of sleeping downstairs in my new bedroom now and it's going very well. Alice surprised me with some Derby County duvet covers and they're keeping me cosy.  It's certainly quiet. Alice's room is at the front of the house and when she asks me if I heard a car alarm going off, a cat scrap, a fox screeching, or an owl hooting in the woods opposite, I say that I didn't. My room is at the back and there is very little noise in the back gardens that overlook my new abode.  With my strength and mobility compromised, the profile bed is very helpful. I can use the handrails to turn over in bed to my preferred foetal position, and I can raise it to assist getting out of bed in the morning. The end of summer rain showers that we've had in Britain have been rattling on the flat roof, which is quite comforting when I'm tucked up in the warmth of my bed. Teddy hasn't slept on the bed with me yet, he just waits until I'm up - che...

Apart from a quick visit to the island, we have spent the last few weeks at home in Southampton, which makes a change from our usual gallivanting around the country at weekends. Not that we've been idle though. We've run two local parkruns in Hampshire, I've DJ'd at my first outdoor event, we've had a visit to hospital, and I've had a couple of home visits. My friend Mark, is one half of Southampton DJ duo Soul 45, and he was kind enough to give me a slot on their annual Boogie Down BBQ, a free, community event on the common which has become very popular. He told me it had to be dance music all the way, so I left the punk, pop, glam, and electro at home, and went for soul, funk, reggae and disco. The fact that I went on first at midday to an audience of about 30, didn't stop me having a great time, and I had a bunch of 'groupies' from our running club cheering me on. We stayed and had a picnic, while watching proper DJ's d...