Month: November 2018

I still lack motivation, but I do feel that I have a little more “get up and go” than I had yesterday.  The weather is still pretty dire – grey and windy, but at least it isn’t raining and it seems a little brighter today.   I feel a tad rigid this morning – maybe I slept in an awkward position, or perhaps it is just Parkinson’s.  Either way, I have significant pain in my upper back and struggle to sit comfortably on the sofa.  I decide that a sauna might help, so, after my usual routine (tea, nutriblast, dog walk and PopMaster) I get a few things together and head off to Woodland Holiday Park.  The heat certainly helps, and I feel that I am moving a little more freely afterwards, and I’m not in so much pain.

I’m starting work on my weekly vlog today, because I have my meeting with Norman Lamb (my Member of Parliament) tomorrow afternoon to discuss the local health trust’s refusal to permit certain medications for me, so the afternoon is spent deciding on a subject (impulsive and compulsive behaviour in Parkinson’s Disease), and I make a start on researching and writing a script.  I grab a few logs from the stack of wood in the back garden (ones that don’t require splitting, because I don’t feel up to wielding a log splitting maul at the moment), fill the log basket, light the fire, have a quick tidy-up and run the vacuum cleaner around downstairs.

The weather here in Norfolk ain’t great today.  It’s raining, grey and windy.  I wonder if the weather has an effect on my mood, because I’m feeling spectacularly unmotivated (again), and really struggle to do anything at all.  I know that apathy/lack of motivation/depression are all a part of the Parkinson’s Disease package, but perhaps I’m additionally suffering with seasonal affective disorder (SAD), so perhaps I need to put a light box on my Christmas present list (that I haven’t been able to motivate myself to write, as yet).

The dog drags me out for a quick walk around the field this morning – I’m very glad to get back inside the house in time for PopMaster, and I spend much of the remainder of the day just sitting on the sofa in the lounge, reading The Metro, and trying to do a little Christmas shopping online.

The dog persuades me to take her for another brief excursion late this afternoon, and then I split a basket load of logs and carry them into the house for this evening’s fire.  I tidy the kitchen and light the fire before my wife arrives home.

I really need to apply for the renewal of my “blue badge” today.  I had an email from Norfolk County Council some time ago now, warning me that my current badge expires soon.  It’s not something that I ever envisaged myself needing, but now I have had one it is difficult to imagine life without it.  It is sometimes embarrassing to use it when you have a hidden illness – I see people staring as I get out of the car, and you can almost hear them thinking “what’s he doing in a disabled parking space?  He’s not disabled!”.  It’s even worse when I’m in my car (rather than my wife’s), because it’s a sports car – sick people aren’t allowed to have sports cars, didn’t you know?  I almost feel obliged to hobble or stagger a little as I get out of the car, just to give some some sort of visual evidence, but as my Parkinson’s progresses then the hobbling and staggering becomes unavoidable in any case.

I print out the application form from the council website, sign and date it, and then set about finding all of the required supporting documentation to prove that I am who I say I am, and that I am entitled to be issued with another blue badge – they already have proof of my identity from my original application, so surely they just need to confirm that I’m still eligible?   It’s not worth arguing about, though – if you don’t play the game according to the rules (no matter how ridiculous) then you lose…  I locate all of the necessary paperwork, scan it in to my MacBook, and upload them to the council website.

Once that’s done, I walk the dog, split some logs and fill the log basket, light the fire (it’s cold outside, and I’m feeling chilly) and vacuum downstairs before my wife gets home from work.

I have a few admin tasks to complete, but I’m a little under-motivated at the moment.  I started writing an email to Norman Lamb (my Member of Parliament) last week, in advance of my meeting with him this Friday, and I really need to finish it and get it sent to him today.  Before I can get stuck back into that, I have a dog that needs walking, a host of messages and comments on social media that I need to respond to, and an application form for renewal of my “blue badge” that needs to be completed, scanned into my MacBook and emailed to Norfolk County Council.  I prioritise, take the dog for a walk and quickly respond to my social media messages and comments.  I compose a fairly detailed and lengthy email to Norman Lamb, setting out my reasons for consulting him (I want his advice on two matters concerning the local health trust – their refusal to prescribe exenatide for me, and their likely refusal to prescribe medicinal cannabis for me).  I strongly suspect that I won’t get anywhere with either of these problems, but if you don’t ask, you don’t get!

I finish typing the email just as dusk is falling, and send it before I take the dog for her afternoon stroll.  On return, I split a few logs and fill the log basket for tonight’s fire, and have a bit of a tidy-up in the kitchen.

My wife arrives home from work, and we go to Woodland Holiday Park for a swim and sauna – neither of us feels much like it, though, and we cut our visit short after half an hour or so, head off home and get an early night.

I have a slightly better day today, in terms of feeling that I have made myself useful.  My wife goes Christmas shopping in Norwich this morning, not returning until late afternoon.   I give “my corner” (the area that I habitually occupy in the lounge) a thorough clean, and go through all of the documents and mail that I have accumulated – getting rid of unnecessary paperwork, filling away utility bills, and prioritising documents that require my attention.  I then clean one of the Chesterfield sofas in the lounge, washing the leather before applying leather “food”, and buffing it to a nice shine.  Next on the agenda is the fireplace, and I wash the slate hearth and the outside of the wood burner.  I split a few logs and fill the log basket, and then run the vacuum cleaner around downstairs.  I take the dog for her afternoon walk, and light the fire just as my wife returns, laden down with shopping bags.

It’s a “nothing” kind of day (for me, in any case).  I have a good lie-in this morning, not getting out of bed until after 10am.  I sit on the sofa drinking my tea and Nutriblast, and catching up on reading The Metro online (I have at least eight unread editions on my iPad) while my wife runs around doing the laundry, changing the bed, cleaning the bathroom, etc.   I feel guilty that she is doing everything, but if I try to help then I feel that I just get in the way.

I do get up off my backside this afternoon, split a basket load of logs for the fire this evening, and also clean the windows of the woodburner.

This evening my wife and I go for a swim and sauna at Woodland Holiday Park.  I’m still snuffling with the remnants of my cold, so only swim a couple of lengths and spend the rest of the time in the sauna.  My wife swims her target 100 lengths.

I’m not having a good day, voice-wise.  I spend the morning researching and scripting my weekly vlog, and then the trouble starts – when I am filming myself.  Strangling my sentences.  Slurring.  Mispronouncing words.  Incorrect emphasis.  To cut a long story short, I reckon that around 20 to 30 takes is usual for a 4 to 5 minute video – this week I had 66!   Even though l have all of these takes (mostly re-takes) to choose from, I am unhappy with the final result, and feel that I would struggle to understand every word that I’m saying, if it wasn’t for the subtitles.

I walk the dog and then fill the log basket whilst my MacBook is busy outputting the finished video, and then upload it to my YouTube channel.  My wife arrives home from work and cooks our evening meal, while I post links to my vlog on Facebook, Twitter, Instagram and a number of online Parkinson’s Disease forums that I subscribe to.

I’m definitely on the mend – my aches and pains have subsided to a tolerable (more normal) level, my head feels clearer and my dripping nose is dripping less than it has been.  I take the dog for a walk, listen to PopMaster and then research prices for posting a roll of upholstery fabric to a company in Norwich (for my wife) – it turns out to be so expensive to send it by courier that I offer to deliver it myself!

I decide to go to Woodland Holiday Park for a sauna – I’m not feeling up to swimming, but the thought of warming my bones up is most appealing.  I spend a swift half hour in the sauna, dash back home to take the dog for her afternoon walk, and then drive to Norwich to deliver my wife’s fabric.  On the way back, I stop off at my wife’s youngest son’s house in Hevingham – it’s his (and his wife’s) first wedding anniversary, and my wife and I have a gift and card for them.  We don’t stay for too long, and I head back home to feed the dog and light the fire while my wife goes to Lidl in North Walsham to get some groceries.

It’s my third day of feeling like death warmed-up, and I have another day of doing very little.  I take the dog for her morning walk (at least it isn’t raining this morning, and the wind has dropped) and then I sort out a problem with our previous electricity supplier, who decided to take money from my bank account despite the fact that they no longer supply us.  I  ensure that I cancel my direct debit instruction so that they can’t repeat their mistake.

I drive over to my doctor’s surgery in Aldborough to pick up a repeat prescription, and then tidy up downstairs, run the vacuum around and then split a few logs and fill the log basket.

My wife is late home this evening (she’s babysitting our youngest granddaughter), so I rustle up a cheese and ham omelette for my dinner, light the fire and watch some rubbish (The IT Crowd) on Netflix.

I’m still under the weather, still not feeling up to doing anything at all.  The fact that it’s cold, wet and windy outside isn’t helping at all.  I dash out with the dog mid-morning when it stops raining for a few minutes, but get caught in a downpour of hail, which does nothing to improve my mood.  It’s a really grey day, and it feels like darkness is falling all day long.  Another pause in precipitation sees me hastily (well, as hastily as Parkinson’s allows) filling the log basket from the stack of logs in the back garden.   I light the fire at lunchtime – much earlier than usual, but I’m not feeling great, so that justifies it!

All too soon, it’s time for the dog’s afternoon walk – it’s still raining, but darkness is closing in, so there’s no delaying it.  There’s three other dogs and their walkers on the field, so our dog gets a run around to use up some of her energy, but we’re soon headed back home to the warmth of the fire.

I have an appointment to see my Member of Parliament (Norman Lamb) on the 31st November, and I want to send him some details of the matter that I’m consulting him about (the local health trust’s refusal to fund exenatide for me, and the likely refusal of the trust to allow my neurologist to prescribe medicinal cannabis for me), so I make a start on an email detailing the circumstances so that he is up to speed with things.

I’m feeling a bit sorry for myself today.  My nose is dripping like a tap (but then, anyone who has ever seen me will appreciate that noses do run in our family), my head feels as though it is stuffed with cotton wool and I ache all over.  I venture out of the house three times – twice to take the dog for her walk, and once to fill the log basket.   I do very little else – replying to some messages that I’ve received on social media, lighting the fire (because it’s cold and wet outside, and watching the flicker of the flames makes me feel better), and (rather belatedly, because I forgot) putting a gammon joint on to cook for tonight’s dinner.

After dinner I apply a large Dalwhinnie, self-medicate with some cannabis, and watch the final episodes of The End Of The F***king World on Netflix.

I’m full of cold this morning, having successfully incubated (in record time) the germs that our youngest granddaughter has been spraying in my direction for the last 24 hours or so.  I’m not feeling too sharp (and I’m still aching from stacking all those logs on Friday night), so I spend the day sitting quietly in front of the fire, only venturing outside to replenish the log basket when absolutely necessary, and to take the dog for her afternoon walk (my wife took her this morning because she felt sorry for me).

This evening we go to Woodland Holiday Park where my wife swims 100 lengths of the pool while I simmer gently in the sauna.

We are in Hevingham for the day, at the house of my wife’s youngest son and his wife, looking after our youngest granddaughter.  She is full of cold, so I resign myself to catching it – I don’t often catch colds, but then again I’m not often cooped up in such close proximity to a germ laden child!   In spite of being very, very snotty, she is quite happy and a pleasure to be around.

By the time evening rolls around and we head back to Southrepps (taking our granddaughter with us), I imagine that I have the beginnings of a sore throat (surely I can’t have developed symptoms so quickly?).

I decide to apply the tried and tested remedy – alcohol!  I vaporise a little cannabis (to help me relax and get off to sleep), pour myself a healthy measure of black cherry schnapps, settle down in front of the telly with my wife, and watch an episode of The End Of The F***ing World on Netflix – a recommendation from my wife’s ex-husband.

It’s a busy Friday, as usual – I have my weekly vlog to research, script, film and edit, I have another delivery of logs at 6pm, and I need to be in Hevingham as soon as possible after receiving the log delivery because my wife and I are looking after our youngest granddaughter for a couple of nights whilst her parents are away in Birmingham attending a Florence And The Machine concert and The Supervet.

I’m busily editing the video when the log man knocks at the front door (30 minutes early) and I lose editing momentum while we move the wood from his trailer into our back garden using my wife’s pink wheelbarrow – very fetching!  Luckily it is dark!

By the time I’ve stacked all of the wood neatly against the back wall in the garden, finished my vlog and published it on my YouTube channel, vacuumed downstairs, grabbed a handful of clean clothes and packed the dog into my car, it’s almost 8.30pm and my wife’s beginning to get a little tetchy (she’s already in Hevingham awaiting my arrival).

I accompany my wife to work today (didn’t you know, it’s “take your blithering idiot to work” day?).  My wife has two appointments this morning to measure up for curtain poles, curtains and loose covers, and I offered my services (as chief tape measure holder) which she gratefully accepted.  So, we are up a little earlier than usual – my wife preparing tea, coffee and cheese omelettes while I take the dog for her morning ablutions.

We leave Southrepps at 8am to drive to Wellingham and Syderstone where her clients properties are located, and it’s mid-afternoon by the time my wife drops me off back home.  The dog is pleased to see me, and we go for a wander around the field by the village hall before darkness falls.

This evening my wife and I go for a swim and sauna at Woodland Holiday Park.  I swim 4 lengths and spend the rest of the time working up a sweat in the sauna, my wife puts me to shame by swimming 80 lengths.

There has been a new donation to my JustGiving campaign, which is great – there was an initial flurry of donations when I launched it, but there hadn’t been any for several weeks so I was thinking that perhaps that was it!  Maybe it was precipitated by my latest update?

I decide to go to the Woodland Holiday Park to use the pool and sauna, so I grab towels, wash bag and a bottle of water and drive over to Trimingham.  It’s only when I’m in the changing cubicle that I realise that I’ve forgotten my swimming trunks – stupid boy!  The receptionist gives me a strange look as I walk out, 5 minutes after I arrived.

I take care of a few things that I needed to do at home, and then depart for Woodlands at Trimingham (again), this time I make sure that my trunks are in the bag!

It’s my stepdaughter-in-law’s birthday today, so the whole family descend on their house this evening to give her her birthday gifts and share a takeaway.

Our boat has been on my mind since we returned from holiday – I bought a new float switch for the bilge pump a couple of months ago, and still haven’t fitted it (in essence, the float switch operates the bilge pump when the amount of water in the bilges rises to a certain level – without this, the boat is fairly liable to sink).  After taking the dog for her morning walk and listening to PopMaster, I grab the boat keys and head over to Wayford Bridge (where our boat is moored) to check that it’s still afloat and to fit the new float switch.

I had been worrying unnecessarily – the old float switch (which had previously malfunctioned) has been busy doing the job that it was made for, and the boat is fine.  I didn’t fit the new float switch, though, because I left it at home (I wrongly thought that I had taken it to the boat and left it there).  I start the engine and run it for quarter of an hour or so (to ensure that the batteries are charged) whilst I’m clearing away fallen leaves from the decks.  I then amble back towards Southrepps, stopping at Lidl in North Walsham to buy some pecan nuts and almonds to roast (to snack on whilst watching telly).

The dog drags me around the field by the village hall just as it is starting to get dark, and then I split a few logs and fill the log basket.  I intended to pop over to Woodland Holiday Park for a quick swim and sauna, but I feel myself flagging and decide to give it a miss today – maybe tomorrow…

I light the fire, and await the return of my wife.

Sometimes the fact that I don’t have the energy that I used to have is brought home to me, and today is one of those times.   Going shopping and then swimming yesterday (even if I did only swim half a dozen lengths) has significantly depleted my meagre energy supply.  I didn’t notice a significant increase in fatigue when I took the dog for her walks, but chopping up a basketful of kindling and then splitting a few logs for the fire tonight was almost beyond my capability.  I was huffing and puffing like an asthmatic steam engine when I carried the log basket into the house from the back garden, and had to take a seat and recover afterwards.  An hour and a half later, I felt up to the gargantuan task of running the vacuum around downstairs and then lighting the fire.

It seems a little pathetic to complain about such trivia, but it it’s fast becoming an issue, and I realise that, in the not to distant future, I’m simply not going to be able to accomplish these tasks, and that’s a depressing thought.  It’s also the thought behind my frequent holidaying – I’m travelling while I’m still able to do so, and actually spent some time today researching holidays for next year (and I’ve only been home from the last one for a fortnight!).

My wife and I decide to go to shopping in Roy’s of Wroxham this morning – we need to find a (belated) birthday present for my wife’s younger brother, and we are also on the lookout for suitable Christmas presents for quite a lot of people!

I get a little claustrophobic when shopping, so its not long before I’ve had enough and am ready to get back to the car and drive home – but we did find a few presents, and I even found a nice Weird Fish top that my wife bought for me.

This evening we go to Woodland (a local holiday/leisure park) to use their swimming pool and sauna.  My wife swims 100 lengths of the pool whilst I only manage half a dozen – I do, however, excel at sitting in the sauna and sweating profusely.  We get back home to a lovely turkey chilli for our dinner, and then watch another couple of episodes of Happy Valley on Netflix.

I’m left to my own devices today – my wife took a day off this week to look after our youngest granddaughter, so she felt obliged to go to work today – so I take the dog for het morning walk and them spend the rest of the morning posting links to my latest vlog on Twitter, Instagram and various Parkinson’s Disease forums (I already posted links on Facebook last night).

My eldest nephew and his girlfriend call in to see me this afternoon, which is a pleasant surprise because I haven’t seen them for several months.  They drag me (kicking and screaming) over to The Vernon Arms for a couple of pints of Abbot Ale and a good old chinwag.  It’s almost dark when we leave the pub, so I take the dog for her afternoon walk and then bid farewell to my visitors.

My wife arrives home from work soon afterwards and prepares our evening meal while I get the fire going, and then we sit down to watch an episode or two of Happy Valley on Netflix.

My voice is giving me cause for concern (again).   My neighbour told me I was suffering with an “incorrect feedback loop” when I told him I was unhappy with my clarity of diction, insisting that my voice was fine – but I can clearly hear the difference between my recent vlogs and those that I made 12 months ago.  I film myself for my weekly vlog (with a multitude of retakes), finally resigning myself to the fact that my voice isn’t going to get any clearer, no matter how many times I try.  The latest weapon in my arsenal is a cup of ginger and lemon tea, which I sip in between takes, and I feel that this does help a little.

I take the dog for her afternoon walk whilst transferring the raw footage from my camcorder to my MacBook, and then get stuck into editing it.  All finished, uploaded and published by the time my wife arrives home from work, which is good.   I light the fire while she prepares dinner, and then we watch a couple of episodes of Happy Valley on Netflix., which is proving to be very good!

I’m still pretty knackered today (or perhaps I just don’t feel very motivated – whatever!) so I have another day of doing very little.  I make a (very) short list of things that I need to achieve – go to the allotment and harvest some spinach (which I do when taking the dog out for her afternoon walk – I also harvest a couple of fairly ropey cabbages and pick up all of the onions, which have been lying on the ground drying out for several weeks now), split a few logs and fill the log basket for the fire this evening (which I do just as it’s beginning to get dark), and vacuum downstairs (which I do while the dog is eating her dinner in the conservatory – she hates the noise of the vacuum cleaner).

Mid-afternoon, I pop into see one of our neighbours for a chat and a cup of tea – he has Crohn’s Disease, and is interested in hearing how our friend (who also has Crohn’s Disease) is faring with treating her condition with cannabis oil (she is doing really well – cannabis has proved to be a miracle drug for her).

I light the woodburner before my wife arrives home, and then we settle down in front of the telly (after we’ve had some dinner) and choose something to watch on Netflix.

I’m really glad that I took the time and trouble to put another tarpaulin over the logs in our back garden yesterday, because it’s chucking it down with rain this morning.  Its gone 11am by the time it has stopped and the dog and I venture out for our (delayed) morning stroll.

The last couple of days have caught up with me today, and I’m not feeling at all energetic – I spend a lot of the day doing very little  (aside from dog walking), although I do split a few logs and fill the log basket in case we want to have a fire this evening.

I feel surprisingly okay today, in spite of my log carrying and stacking exertions yesterday evening – I was expecting to be aching!

My wife and I are looking after our youngest granddaughter today, and we plan to take her over to Wroxham Barns where they have a collection of farm animals for children to see, so my wife is up early and out of the house to collect her from Hevingham, while I stay in Southrepps to walk the dog.

We drive over to Wroxham Barns and spend a pleasant couple of hours visiting the array of goats, sheep, pigs, donkeys, chickens, etc.   We end up having a sandwich and a drink in the cafe there, before heading off back to Southrepps.

My wife drives over to Hevingham (again) to return our granddaughter to her rightful owners, while I take the dog for another walk, cover over our carefully stacked logs with a tarpaulin, vacuum downstairs and then light the fire.

I said I was taking a couple of weeks off from blogging, coinciding with a couple of weeks holiday.  How quickly two weeks has become three weeks, but now, I’m back!

My wife and I had an amazing time – soaking up the rays, eating and drinking entirely too much, and snorkelling in warm, clear seas (not necessarily in that order!).  My Parkinson’s didn’t restrict me too much – I don’t have a huge amount of energy these days, but then there was no pressure to expend any, I was able to do as much (or as little) as I felt capable of.  While we were away, we celebrated our 5th wedding anniversary, so that made our holiday particularly special.  Travelling is a tiring business, though, and the week subsequent to our holiday has been spent recovering from the travelling, adjusting to the time difference, unpacking suitcases (mostly by my wife), washing all of our holiday clothing (all done by my wife) and generally getting back into the swing of life in Southrepps.

Whilst we were away from the UK, I went without my usual medication (cannabis) and depended upon the demon drink to relax me and to help me get off to sleep.  It’s a relief to replace alcoholic intoxication with herbal, and herbal is so much more effective!  So, I should be jumping for joy at the news they cannabis is now legal (from 1st November 2018) for medicinal use – surely all I need to do now is request it from my GP?  Wrong!!!  Even if my GP were allowed to prescribe it (which he isn’t – only specialist clinicians are permitted), the government guidelines for the prescription of cannabis are so restrictive that it is unlikely that anyone will be able to quality for it – what a surprise!  (NOT!).  The battle for access to this amazing plant rages on!

The weather changed while we were gone, and there is now a definite nip in the air, so thoughts turn to cosy evenings with the woodburner blazing away.  I contact the person we last purchased logs from, and arrange delivery of a cubic metre of hardwood logs this evening.  It’s extremely dark when the log man arrives with his trailerful of wood, so I illuminate the back garden with the light that I use for filming, and we cart the logs in from the road using my wife’s pink wheelbarrow – very fetching!  My wife arrives home from work in time to help me stack them in the corner of our back garden, and then I fill the log basket, light the fire and we can relax.