May 3, 2016

Life is too short to not live in pyjamas

Posted in May tagged , at 2:40 pm by viewfromthisdesk

There is reasoning behind my random title.  Having just had a lovely four days off work, what with the early Spring Bank Holiday and a cheeky Friday off work because one of my besties was visiting I have realised that I spent a large chunk of those four days, dressed in pyjama trousers.

They’re fab trousers, I’ll have you know.  Burgundy with reindeers on them, so totally appropriate for May.  But they are comfortable and soft and don’t have zips or buttons which has to be the best feature of them by far.  I wasn’t totally mad, I didn’t wear them to the concert on Friday night and I didn’t wear them when we left the confines of the house and garden to venture into The Great Outdoors.  I did however, mooch around my garden plenty in them.  Sometimes paired with a vaguely similar coloured t-shirt, sometimes my dressing down, sometimes my coat.  Who cares.

I have to be thankful for the little things that occurred whilst wearing my amazing pyjamas.  My friend still visited, knowing full well that pyjamas are a core part of my wardrobe sometimes.  The chickens still got fed and laid eggs – they don’t care what I’m wearing.  A lovely mate came to collect said eggs and didn’t give two hoots about my outfit.  My friend and I cleared out the poly tunnel greenhouse (bonkers idea on my part) and we finally managed to ice the Christmas cake.  Yep, you read that correctly.

What I guess I’m trying to share is that sometimes, pyjamas are a suitable outfit.  Things got done around the place regardless of my reindeer clad legs.  I was comfortable and felt capable of doing stuff.  That has to be a bonus.  I’m not sure my neighbours appreciated my clothing choices but that’s for them to deal with in their own minds.  The fact I was out of bed and kinda vertical is a achievement on my part which I’m celebrating.

 

And because I know everyone wants updating: the rose bed still needs weeding.

May 18, 2015

Turn up for the books

Posted in May tagged , , , at 12:29 pm by viewfromthisdesk

I did something wild and crazy this morning.

I stood on the scales.

I know.  Scary and mental and why-the-heck-for moment there.

But it says that I’m not *actually* as heavy as I thought I was.  I’m even lighter than the wedding day numbers!  Shock, gasp, surprise!

I’m blaming the lack of numbers in the consumption of my own-body-weight in home made rhubarb ice cream.  Whilst it is pure cream, there was a huge amount of home grown rhubarb in there too.  And I didn’t have tea, just pudding!  Plus, there was a traipsing around a wood yesterday, a mooch along a river bank on Saturday and then the total re-arrangement of the middle floor of the house.

Whilst I now have generated a very lovely guest bedroom, I have utterly destroyed my bat care room and there is no landing anymore, just a Krypton-factor-esque scramble to the next set of stairs.

Every night this week I’m on something bat related so I absolutely must remember to not take bags sugary sweets, not accept cake (just mugs of tea) and dance to the tunes in my head whilst waiting for the cute ones to do something worth writing down.

I’m still lazy, I’m still attached to heat pads or TENS; I’m just dancing (more swaying tbh) this week for a change.

May 20, 2014

It wasn’t as bad as I expected …

Posted in May, Twilight Walk tagged , , , , at 12:23 pm by viewfromthisdesk

So the walk was fine.  Honest.  It was a bit disorganized in that I’d looked up the route to make sure I was happy with where I was going etc and then they took us another way.  Odd.  And we had to do follow-my-leader but the pace was okay for me, so that was fine too.  And we did indeed dress up  as promised :-

walk pic

Needless to say, the tutu and wings theme was quite common, but my wings were the best – they weren’t pink for starters!

We were all worried about the after-effects, let’s be honest.  I didn’t know how my body would cope with the distance or my mind the anxiety about it all.  But aside from cramp in my calves all weekend, I’ve been remarkably alright.  My emotions took a hammering on Saturday with an email from a friend who is battling this big c rubbish-ness.  I thought she was okay because I’d not heard from her for a while.  Goodness I’m dumb sometimes.  And I’m now really angry about the situation which doesn’t help her and doesn’t make me feel like I’m helping.  But I have to remember that us three raised almost a thousand pounds on Friday night.  That pile of tenners will help some scientist somewhere fix this wretched disease and then my friend will be back with me, explaining why my onions won’t swell or why my seeds are taking for-ev-er to germinate.

May 14, 2014

So much to tell you

Posted in Health stuff, May, Twilight Walk tagged , , , , , at 11:51 am by viewfromthisdesk

Last week I saw the M.E. Psychologist doctor bird.  She was far too young for my liking, I’m not sure that she wasn’t actually on work experience.  She said that due to funding issues, there’s not really anything more they can do for me other than discharge me from the service and offer me a drop-in clinic thing.  Ah well.  I got lots from it and hopefully my space can be given to some other person struggling with a new diagnosis.

Yesterday I finally got to see the Pain Management Team.  The youngster had told me to hold my ground with them and demand help.  I said if she read about a sit-in-protest situation in the hospital, she’d know it was me.  She said my excessive use of humour is preventing me from accepting the chronic-ness of my diagnosis.  Silly wench.  Anyway.  Back to the pain team.  Lovely chronic pain nurse and another youngster quack, but he had a beard so clearly trying to look older.  I did indeed, refuse to budge until I had a shopping trolley of things.  My pharmacuticals are being changed to give me more of a constant pain relief, I’m being referred for hydro-therapy, I have to go to some happy clappy group session to stay in the system but the thing I really wanted; I’m on the list for a TENS machine.  Yey.  I only get it for a month to try and then if I like it I can buy one.  I’m chalking that up as a result.

Two days to go until this crazy Twilight Walk.  I had hoped to hit £600 when the donations were flying in, but we’ve paused at £551 for some weeks.  Never mind.  So, 5km.  Have seen the route, that’s fine, have planned lots of pink things to wear, not so fine but it’s a good cause.  And it’ll be dark I hope.  Hahaha

Then next Friday I’m leading a walk through the park and along the river in town for education and public interaction with the bats.  9pm meet at the park-side of the Bell Tower if you’re interested?  Should be fun and I won’t be wearing pink!

May 2, 2014

It’s the Final Countdown, a la Joey Tempest

Posted in Health stuff, May, Twilight Walk tagged , , , , , at 1:25 pm by viewfromthisdesk

I’ve got that keyboard bit in my head lots.  Nothing like a bit of 80’s cheesy rock to inspire and motivate eh.  Put Europe on loud, turn up to 11 and bounce around the room.

So.  Two weeks to go.  Eeeeek. Two weeks until this crazy Twilight Walk.  When we decided to do this madness, I thought it would be good if we reached £150 in sponsorship donation thingies.  Now we’ve just hit £551 and I’m totally overwhelmed.  What does strike me as insane, is that all bar 4 of the 40 donations, are friends, so I’m hoping the family ones will pile in once we do it and are lying in a crumpled heap on the sports field.  Then the total might be stupidly amazing.

My preparations are going well, I’m walking the length of the front garden (120 feet) at least twice a day.  I’m sure that’s more than enough to get me through 5km at 10pm at night.  Oh, and I’m carb loading for energy.  Thought I’d start that early and get through this mountain of hot cross buns I’ve been stock piling for the end of the world.

Aside from all that, I’m not ideally well.  I’m having a joint flare up and as my quack cannot get me to physio for splints or supports before 2018, we’re having some time of increased pain meds.  Nice.  When I say ‘joint’ I do mean more than one of course.  Nothing simple with my skeleton.  Need to get on top of this quickly though, I’m being booked up for proper paid commercial bat surveys (woop woop) and I’ve got the first Evesham Bat Walk of 2014 happening on the 23rd.  I need to be able to string a few words together in the right order, and walk and hold stuff.

Come along if you are free, it’ll be a fun hour, I promise.  I’ve been told I’m highly entertaining.  Not sure if that comment was meant as a compliment, but I’m taking it as such.

May 6, 2012

Bank Holiday Blues

Posted in Health stuff, May tagged , , , , at 3:55 pm by viewfromthisdesk

So, May bank holiday weekend, typically associated for me with a weekend camping at Stoneleigh Royal Agricultural Showground. No camping for me this weekend. My joints cannot take the fluctuating temperatures, the uneven surfaces, the unpredictable day. So, hubby has gone for the day and he was out all day yesterday too leaving me feeling very lonely and miserable.

Now I know that some of you reading this will be most annoyed that I didn’t call you and ask if you wanted to spend the day together.  I’m sorry about that, but honestly, I’m not great company.

I’m lonely and miserable and tired and feeling pretty pathetic.  This stupid, evil, horrid illness has wiped out all scraps of self respect and confidence I ever had.  I’m wanting to go in the garden and plant seeds so I have salad and veg all summer and I can’t open the fiddly little packets, can’t pick up the tiny seeds, can’t stand long enough to pop compost.  My hands don’t work, my hips are in agony and yet another favourite thing of mine has been stolen by this wretched condition.

I started to sort through all my craft items too yesterday which wasn’t great for my brain.  I used to design and make (dare I say it myself) gorgeous cards and I was so proud of my work.  So pleased with the joy my things gave others.  I can’t do it anymore, I can’t hold or cut or move or stick.  So it’s over.  I have ticked the box on my tax return that says the business is finished, I have deleted my facebook page and probably, the most drastic of all, I removed the vinyl lettering off the back of my car which gave my website details.  Another door closed.  Now I just have to clear everything out, sell the bits and move on.

So, I spent large chunks of yesterday wanting to just crawl back into bed.  It’s the least painful place to be in my world.  Today, I was prepared for wanting to do that again, I took my phone and kindle upstairs, ready for a day of hiding away from the world under my duvet.  But then the sun came out and convinced me that getting dressed and just doing something as simple as pegging out some washing, whilst exhausting, is actually a positive move in the day.

I want to weed and prune and mow the lawn though.  I want to plant seeds and tidy the greenhouse and start another year of self sufficiency.  I’m so deeply frustrated, so annoyed at having to rely on others for the simplest of tasks.

I’m not writing this for attention.  I’m not wanting you to ring me or text or email to ask if I’m okay.  I’m just being honest.  All too often I gloss over the cold hard truth for you.  Not today.