Blowing in the Winds of Change

Good morning World, :hello:

We came back into town yesterday. Mifi box has been getting temperamental so I ordered a new one - along with a few other useful bits for the van and some extra supplements [more about those later] - so had to collect a pile of packages from the village shop anyway.
After a lovely fresh, hazy start to the day the temperature quickly rose to 28'C, so M and I ended up at the beach. It is lovely listening to the surf, enjoying ozone-rich air and a cooling breeze while still being able to rest in the van with all the windows open. The police patrols know me now so leave us in peace as long as I am gone by nightfall - camper-vans are officially banned during the summer season due to pressure from local camp-site owners - but having property nearby and using the van as my daily transport allows the officers to make an exception to the rule (one of the policemen has a sister with ME so he is very understanding, advocating for me with his colleagues).

M has been incredibly well behaved recently; he deserved a reward so we shifted in time for the evening rush at the dog park; barely saw him for a couple of hours as he hurtled about with dozens of other dogs while I chatted to their owners.
We are now "stealth camping" in a side-street. I don't much like the all-night traffic noise instead of nightingales, owls and insomniac cockerels but it does save a lot of energy not driving back to the campo [only eight miles, but even so.. ].

The new mifi box seems to get much better reception than the old one which goes some way towards justifying it's high price tag [£85! :eek:].
Something has gone wrong with the van's 12V system so I also bought cables and connectors in order to be able to at least run the freezer off van's alternator as an extra fridge while we are travelling. It will mean working out a new approach to our diet on the road but better than living exclusively off beans on toast [me] and supermarket meat [dog].

The largest River package was a bit of a surprise - a huge pot of gloop; am trying a supplement which is supposed to prop up the mitochondria of PwME - but discovered after ordering that it's more effective for recently afflicted people whose mitochondria has not yet been damaged by the disease. Oh well, it's here now - I thought pricey at £36 - will give it a go.

This year so far my budget has been £1,500 which includes m' new Spanish Will, repairs to the electrics at DH's cottages and extra security for the Nest (as well as groceries and vet checks for M, of course). Must remember to top up the bills account before leaving though.

Dansmam wrote: »

Hi Robin good to see your update, sorry to hear health is such a trial for you at the moment and you're so missing DH, here's a virtual hug, for you, and an ear scritch for M. Is your plan to stay back in the uk or is it more of a visit to put the house up for sale? Safe travels when you feel ready x

Hi Dansmam,
Lovely to hear from you, and cheers for the virtual hug - much appreciated; physical affection beyond doggie-licks is a rare thing in m' life these days - M chose a belly rub instead of ear scritch, hope that's ok?
Not thought about long term plans really, beyond the need to liberate accessible funds. T2 has given notice so it would be a convenient time to sell that house, then some of the proceeds could be used to convert part of New House's extensive ground floor storage into a Granny flat for me. DS4 has already done a lot of work on NH - I barely recognised the back garden in the latest 'photos he sent me; last year's tangled wilderness is no more!

Divo Four has not been having an easy time of it though; uni is much harder than he found it while studying for his first degree, and his beloved mentor is very ill. Nevertheless he is still winning prizes for his published work, both cash and academic accolades. Wonder if I will live long enough to see him become a household name?

Sun_Addict wrote:

Good to hear from you Robin but sorry to hear you're having health problems. Hope you're feeling better soon and strong enough to make the journey back. Take care xx

Hi Sun.A,
Lovely to hear from you too; I was sorry your holiday clashed with the last lot of bad weather in this part of the World - between rain, wind and blown Saharan sand it must have been so frustrating for you. :cool:
Thanks for giving me a little chuckle - am already nearly four years beyond the expected lifespan for a long-term PwME, so "feeling better soon" is very unlikely to be in my stars - but am not quite ready to give up yet despite everything from breathing to any and all activities becoming harder by the month. I find it quite obscene that folk with ME still struggle to get awarded disability benefits even when further along the disease process - feel so lucky to have been able to avoid the ATOS sadists thus far!

fraserbooks wrote: »

Hi Robin, I don't usually post on this board as I am not in debt myself but I just wanted to say your post made me realise how little I knew about M.E. and I spent some time looking at the M.E. society website after reading it.. I am going on holiday next month with a friend who has it and wanted to be a bit more prepared so Thank you for sharing.

Fraserbooks - thank you so much for taking the trouble to learn more about this horrible hidden disability. I am certain your friend will have appreciated your efforts to make the holiday more enjoyable for him/her.