August 16, 2017

Weeks thirty-one and thirty-two

Posted in August, November tagged , at 12:14 pm by viewfromthisdesk

It’s been an interesting and difficult fortnight. However, I can’t say I wasn’t expecting it. I write this blog trying to pretend no one reads it, or at least if they do, I don’t know them. You are all unknown and mysterious.

That is a daft frame of mind I appreciate, but if I’m going to write then that’s the mindset I start from. Because if I think about you as an individual, as a friend or family member, I’m not going to be honest because I don’t want you to worry or be upset. I protect you from the truth and no one wins. You don’t know I’m struggling and I bottle it all up.

I totally know that my post ‘when the darkness wins’ has upset some of you. I also know that my post ‘One Million Lovely Letters’ was much more cheery and read by half the people.

So unless you sign up to get these witterings by email, you might miss the happy ones. Relying on faceache to show you everything is like relying on Father Christmas to bring you that new car *and* squeeze it down the chimney without scratching it. So click on the grey box that says follow and you get to laugh with me much more than crying.

I was humbled by what followed both those blog postings. I received my very own Lovely Letter, not from Jodi but from someone else who had watched the programme and thought of me and then read my blog post about the show. That random Lovely Letter made my week. It’s amazing what a stamp and ten minutes of your time can do to cheer someone up. So I encourage you all to do it because I can vouch for the magic it makes. I also wrote three of my own Lovely Letters. I didn’t manage one a day for a week but three is better than none. And I want to do it again soon.  I may have cheated insomuchas one of them was typed and one of them was a post-it note sized card but I still did it.

I also had surprise parcels and gifts. I had a gorgeous bunch of yellow flowers from a dear friend and they also brought doughnuts which were lush. I had a packet of kit kats which you all know I have a weakness for, an engraved spoon which has more meaning than just the words etched into it and a manatee tea strainer which is so epic that I cannot put into words.  And all these things before my birthday!

So maybe I need to be more aware that people do care about me and my mental health. Maybe I’m not as alone as I thought I was. People may be geographically distant but not emotionally.  And if I upset you then please tell me, or if you have questions then ask them.  Ask me to elaborate on something or discuss further or pass on sources etc.  If you interact then I know you’ve read and are interested.  Email me, messenger me, a proper letter even!  Human interaction can be lost in this modern technology filled world.  Tell me you saw that scenario I wrote about from a different point of view.  Challenge my negative thoughts and memories.  Recommend a film to watch or a book to get on my kindle and then we can talk about it like proper grown ups.

I hide behind these sentences because I cannot meet you for a drink in town or travel to your sofa or speak to you on the phone.  I use this writing medium to explain the stuff that my speech issues prevent me from saying.  I can type at 2am a reply to a message.  So don’t read and be sad, read and reach out and tell me how things are.  Tell me it’s not like that, tell me it’s actually somehow different.  Help me look at things from a different angle, through different coloured glasses.  Remind me to stop eating everything in sight.  Tell me about your lovely letter that you wrote and the feedback you got from it.

I’m still here, just not physically.

January 18, 2017

Paying it forward

Posted in November at 11:24 am by viewfromthisdesk

Or attempting to at least.

On New  Year’s Eve, I agreed to participate in a pay it forward thing for 2017. I was super cautious after the mess I made of random acts of kindness but I decided that this year it would be one act a month and would cost no more than five quid. That way, I can’t get carried away and it’s fairly subtle.

This morning I saw some flowers in a shop. In a colour I’d never seen before. I knew these flowers were someone’s favourites. It made sense in the shop to get them for this person.

Then it got super awkward. I’m stood on their doorstep realizing I hadn’t thought it through. How to explain why I’m suddenly buying them flowers? I did make a hash of it to be honest. I repeated myself about ‘I know you like these’ I thrust the flowers out like a jousting pole, I fidgeted on the doorstep like I was stood on hot coals. I was not in control.

But this person has flowers and I’m now aware that I need to try harder next time to not be a wittering idiot. The first time is always the hardest, right?

 

In other news, I still miss Pirate Cat like crazy. Her memorial beads are in progress  and I have super amazing mates who have contributed. I also have the lurgy, my throat is lined with razor blades and broken glass, my head is going to explode.

November 1, 2016

Grieving for the past

Posted in November tagged , , at 10:45 am by viewfromthisdesk

I just stumbled upon an excellent blog post entitled ‘Grieving for me because of M.E.’ and it was blinking brilliant.  Totally resonated with some of the thoughts and feelings I’ve been fighting with these past few years.  Hubby and I often talk in terms of ‘before’ which is kinda like modern societies BC / AD time splits.  ‘Before the diagnosis’ would be a good title but I was struggling for a few years before that actually occurred. ‘Before’ is all and more of these.

Before I was ill.
Before I got tired.
Before things hurt.
Before I couldn’t walk unaided.
Before I had to give up alcohol.
Before everything had to be considered in minute details as to how/when/where.
Before people thought I was unreliable.
Before working full time wasn’t possible.
Before being a burden on those around me.

I know I try and laugh and joke and use humour as a distraction tool.  If I’m making you laugh with me, then you won’t notice the pills I’m swallowing or the furniture I’m clinging onto to walk around.  You won’t notice the pain dulling my eyes or the strappings and supports that are holding me together.  If I make my crutches colourful and exciting they’re an accessory not a burden.

And some of you gorgeous, lovely people have constantly told me to be honest.  To trust that you won’t run away and you’ll stick with me no matter how bad.  But I don’t want that.  I want before still.  I want to be the person I used to be.  I am grieving for before.

October 11, 2016

Long time coming

Posted in November tagged , , , , , at 12:01 pm by viewfromthisdesk

It’s bizarre how fast this year is progressing.  Yesterday was apparently eleven weeks until yuletide which is scary enough to remind me I haven’t even given it a thought yet.  I was also reminded that two years ago I was in a pretty bad place and my meds had been increased significantly and I wasn’t sure how I felt about that.

With a condition like ME, nothing is ever constant.  There never seems to be a pattern or a routine that gives you the heads up on anything.  I am aware of situations that don’t help my physical or mental well being but these are not set in stone.  For example, last week I was temping and this usually makes me really, really ill.  The long days, stressful working conditions, bright lights, driving at busy times, it all combines to usually leave me in bed for the weekend at least.  Last week was particularly mental.  It was so busy and there was no one else to take the pressure off (usually I can shout that I’m locking myself in the loo to get away from the phones for five minutes and someone else will cover them) and I ended up working ten hours on the one day.  It wasn’t fun.  And then sensibly, I decided to throw my flu jab in the mix of a crazy week.

I have a jumble of feelings about the flu jab.  I have it because it’s offered to me and I don’t usually get anything free so I’m inclined to take it whilst it’s there.  I have it because my immune system is shot to pieces and so if I got any sort of bug it would flatten me for a couple of weeks.  I don’t like it though because it usually ruins me for a good couple of days.  Last year I had to miss a gig we had planned to go to because I was so nauseous and wobbly.  This year I was expecting to feel rubbish but figured that it would be combined with post-temping rubbish-ness and I’d just get it all over with in one hit.  This year I’ve (so far) felt okay.  Aside from the usual lumpy sore arm, it’s been okay.  I like this current mix of poison that they’ve given me.

I seem to be managing in the short term at the moment, I do feel that I’m taking a micro-management approach right now.  Rather than trying to plan in scales of weeks or months I am literally going from day to day, half day to half day.  It seems to be working for the time being.  It does mean that there are extra clothes/strappings/hot water bottles/tens machines scattered around the house but it’s how I’m coping for the moment.  I have a huge amount going on in my life for the time of year, usually I’m enjoying the leaves changing and the time to sit with Pirate Cat but that’s not possible right now.  And maybe, because I’m so busy trying to do so much is why the micro management is working because I’m trying to be well, or at least vertical, for so many things that I need to just get through one thing after another.  I’m sure it will all come crashing down in a pile of tears and ibuprofen gel and whatnot but for the time being, I’m surviving.

November 21, 2014

How was it for you?

Posted in November tagged , , , at 10:46 am by viewfromthisdesk

How was your World Kindness Day?  Did you get a surprise card or bunch of flowers?  I hope your Thursday was full of smiles.

I’ve started getting what my medical peeps call cluster headaches.  Attacks that come on suddenly, for no reason and make me feel like my head is both stretching to exploding point and sucking into itself via my eyeballs at the same time.  No trigger necessarily, not just when I’m at work or at home or in the morning or afternoon.  And sometimes they’ll last an hour or so, the longest I’ve had is three days.  I hate them.

But in a week’s time, I’ll be on Lundy.  And you all know what that place means to me and how much it fixes me.  Please keep everything crossed on December 1st that the helicopters are not affected by weather or mechanical gremlins and that I get an early trip across.  Not just because I selfishly want to get there as soon as possible, but so I don’t get into a total tizz having to listen to the noise of the machines (I’m so scared of them, honestly, I really, really hate helicopters) and trigger a ME fail.

 

Whilst I’m here, I’d love it if you’d consider using easyfundraising whilst you do your online shopping.  Food, pressies, insurance, train tickets and concert tickets too – just loads of retailers are involved like John Lewis, Amazon, Ticketmaster, pet food suppliers, grocery retailers and there are millions of good causes to choose from.  I’m possibly suggesting Evesham Bat Care ………… 😉

November 7, 2014

Looking towards Thursday 13th November

Posted in November tagged , , at 11:45 am by viewfromthisdesk

I’m not hinting for anything 😉 but I wanted to share that I’ve learnt that next Thursday; the 13th November is World Kindness Day.

No-act-of-kindness

So I’m going to do some randomly nice things.  Here is fair warning that it might be for you.  It might just be a note or a text to say I appreciate you or a bunch of flowers but I want to share my thanks and all that girly gushing-ness on this particularly poignant day.

 

P.S. Monday 17th is homemade bread day but my breadmaker has died 😦  Feel free to … you know … send me bread, or cakes, or a new breadmaker! Hahaha

November 5, 2014

Starting over again

Posted in November tagged , , at 11:19 am by viewfromthisdesk

This is a positive post 🙂

Since I’m enjoying doing my ribbon wreath, albeit a bit at a time I’ve made plans for my next wreath which I’ll make out of those tiny baubles that are about an inch diameter.  Baubles plus ring plus glue gun equals creating giggles and fun and a fabulous new thing to show I’m still able to craft and make pretty things. Something kinda like this I guess.  My sister is talking about making a pom-pom one so I’d best stock up on glue sticks whilst raiding the charity shops for tiny baubles!

baubles

I’m also needing to raise money for the bat care work.  The promotion of sponsor a bat for a fiver and give it any name you want is almost popular; we’ve had Jared Leto, Johnny Rotten and Mr Fluffy plus a couple more, but the hope that I’d have some proper rock star names hasn’t quite been achieved. However, all sponsorship will help the cute ones next summer.

In order to try and raise a bit more I’m thinking I’ll dig out all my card making stuff again.  The effort to sell it all didn’t really work so why not do something I love, with stuff I have, to raise money for something else I love?  Maybe if I’m not trying to make a living from it, I’ll get more pleasure out of it?

So, don’t forget me or the critters for upcoming events 🙂

October 20, 2014

Tying myself up in knots

Posted in November at 9:09 pm by viewfromthisdesk

Almost a year ago I asked for bits of ribbon and lace. I thought I should share my project, if only to ask once more for scraps and hanging loops from clothes! It’s been difficult going due to my obsessive need for no gaps. I can only sit and tie ten, maybe fifteen bits at a time. And it’s fiddly work which kills my fingers and back. But I’m pleased so far and whilst it wasn’t ready for last year and it really isn’t likely to be ready this year; I’m getting there.

image

September 10, 2014

Update

Posted in November at 9:35 pm by viewfromthisdesk

Candle both ends.
Multiple bats in care in spare room.
Broken sat-nav.

Bad times.

July 18, 2014

Friday night goodness

Posted in November at 8:14 pm by viewfromthisdesk

* sunny afternoon
* bit more progress in the garden
* a delish evening meal of strawberries and chocolate ice cream. Yep really, just that.
* home alone (clearly) so watching chick flicks.
* if I didn’t feel so full, I’d be diving into popcorn too now.

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