July 1, 2018


Posted in June, Monthly update tagged , , , , at 10:47 pm by viewfromthisdesk

June has been busy and frustrating in equal measures.  And we’re now half way through the year and so far, my targets for myself to keep me busy and not thinking and out of the house have been reasonably successful.

Cinema was ‘Deadpool’ and ‘The Book Club’.  Very different films with very different companions!

Theatre nights out were a transmission of Oscar Wilde’s ‘An Ideal Husband’ and then a live performance of Agatha Christie’s ‘Love from a Stranger’.  Apparently it’s not performed very often.  I can understand why.   The lady sat next to me in the interval said ‘Why has no one died yet?’ which was on my mind too.  Then at the end her comment was ‘That was a waste of £31, I’ve not been that bored for a long time’ and I could see her point.  It was slow and the storyline was iffy and I too left feeling disappointed and slightly overcharged.  But it was the theatre and I did it on crutches.

Films were ‘All the Money in the World’ about the Getty kidnapping and ‘The Dinner’ which despite the star names was absolutely awful. The 15:17 to Paris and The Maze Runner: Death Cure.

Books were ‘The Legacy’ by Katherine Webb, ‘The Betrayals’ and ‘Good Girl’ both by Fiona Neill, ‘The Choice’ by Samantha King, ‘Blood Sisters’ and ‘The Killing Type’ by Jane Corry. ‘Where the Missing Go’ by Emma Rowley which was marketed as a psychological thriller but the whole time I was reading it I just kept thinking about the film ‘Room’ and was therefore disappointed. ‘Almost Love’ by Louise O’Neill, ‘My Animals and other Family’ and ‘Walking Home’ by Clare Balding. ‘The Marriage Pact’ by Michelle Richmond was probably my favourite book of the month but a very close runner up was ‘Into the Darkest Corner’ by Elizabeth Haynes. ‘The Kiss Quotient’ by Helen Hoang which sounds rubbish but at 2am it held a decent storyline.

75 books in six months. That’s a mad total to live up to in the next six months!

Music was Supernova a local band, my last night out before the operation. I also had tickets for a Motorhead/Metallica tribute evening and then tickets to see Tequila Mockingbird a band we’ve heard on Planet Rock a fair bit. Alas, I didn’t make it to either of these, the foot for the latter and an ME crash for the former. Hate wasting money. I did manage to go to a Whitesnake/Def Leppard tribute evening gig even on crutches with my stupid foot.

Foot op happened on Monday 4th. Had to be at the hospital for 07.30 and I’m sure I didn’t go to theatre for a good 4 hours. The waiting was the worst (mainly because I just wanted a cup of tea!) but I managed to read three magazines and a whole book so it wasn’t wasted. It was a necessary evil. Except at the original appt, I was told I’d need to stay off it for a couple of days. Fine. But on operation day I was then told I couldn’t drive until at least the end of the week and couldn’t weight bear on it or get my foot wet for two weeks or until my outpatients appointment for the stitches to come out! Less than fine. And then the surgeon drew on my leg with marker pen which is hard enough to get off before you then consider the not getting it wet rule. Thank goodness for tea tree wipes. The operation took place on a Monday and the foot was mostly numb for the rest of the day. Tuesday it got a bit tingly, Wednesday was interesting as I had to go to work for a couple of hours and the only footwear that fitted was my purple slipper boots that a top friend crocheted for me. Utter professionalism there. I’m sure you’ve all twigged by now, I’m not the most patient of individuals and the healing process that causes itching is my downfall. I was grumpy and snappy and quite the cowbag. By Friday I’d learnt that taking ibuprofen two hours after liquid morphine is the best combination for pain management this early in the healing process. Saturday was a nightmare, couldn’t get on top of the pain at all. A week on and I was just about managing but the lack of walking or driving has proved tricky.  If the lump comes back – because it’s not guaranteed that the operation will have cured the issue, I’m not sure I’d want to go through this again – and especially not in the midst of bat season.

Lots of bat stuff: five roost counts, a dawn survey, a dusk survey, a bat walk with fabulous people and epic shoes – there’s a video of the shoes on faceache and I don’t care that I could probably have been seen from space. Plus it was Evesham Bat Care’s fourth birthday on the 21st. I am immensely proud of this group of people and what we’ve achieved. This summer I have a pile of trainees and I can only see this as a positive thing for EBC.  I now have a kitchen full of pups which is really, really exhausting.  They need feeding every three hours and that’s through the night as well.  You can follow the journey of Sparkly, Moley, Blondie, Ted and the HR2 gang on facebook via EBC.

Health wise, it’s been all about the foot.  I can’t even think beyond the foot to be honest.  I just hope ourpatients on the 4th July goes to plan and I get my foot back.

I did do something new and challenging for me this month; I did a journey on my own on trains. I had to go for a meeting during the post-op period and I couldn’t drive so the train was my only choice. And I had to change trains too, it wasn’t a case of get on and get off, it was tricky. I’ve not travelled on my own life this for over 15 years. So it was stressful but a bit exciting and I managed it and I wasn’t late and nothing bad happened. Don’t get me wrong, I’m not wanting to do it again in a hurry but I did it.

I did it.


June 12, 2018

Finding the strength to say no.

Posted in Health stuff, June tagged , , , , , at 8:26 pm by viewfromthisdesk

It’s a tricky thing to write about but I know I need to. Today I’ve hurt and upset someone which makes me sad but I’m also hurt and a bit angry at their lack of understanding. So I’m going to write about it b’cs that will help me work through my feelings calmly.

Sunday is Father’s Day. Always going to be tricky. So the in-laws have suggested going out for a meal,which is fab. The downside is the place they want to go to is over half an hour away. And I’ve looked at the menu, it’s expensive. I have a mad few days leading up to Sunday and then Monday is my operation and I need to be not stressed out or more knackered over and above the norm. And the only table they can book is half four, so neither lunchtime nor teatime!

I tried to explain I couldn’t travel that far, nor was I comfortable about the prices. I clearly wasn’t very eloquent.

I don’t think I’ve ever said no to them on the grounds of health before. Yes I’ve missed stuff last minute b’cs of migraines or other stuff. I’ve missed events b’cs of diary clashes too. I’ve just never said no in advance. And that’s absolutely my fault. I’ve pushed myself to attend and smile and hide the truth about how I’m feeling. Once I kept my sunglasses on b’cs I felt awful but I didn’t say no.

I don’t ever want to say no to anyone. I want to feel wanted and invited, I equally need people to understand that sometimes things aren’t ideal and I pull out last minute. The illness hasn’t just popped up either, this has been me for eight years now, its not a new situation.

And saying no has been hard. It’s not what I want but I have no other option.

Or do I? Should I have just pulled my big girl pants on and said yes? Am I being selfish in a bad way?

June 8, 2018

First time experiences

Posted in Health stuff, July tagged , , at 8:45 pm by viewfromthisdesk

I think I had my first panic attack today and I didn’t like it.

Part of my M.E. quirkiness is that I get hyper stimulated easily. Especially with light and noise. I guess that’s why bat work suits me – it’s dark and mostly quiet. So I’m quite particular about where I go at certain times and I have precautions I can take to avoid issues.

Today we went to our usual supermarket -it’s not the biggest in town but I can cope with the layout and light levels and everything, I know where everything is, I can write my list in order of the shop so it’s an easy and quick in and out. Except it has all changed.

I immediately felt disoriented – Should be looking at bread but instead it was crisps. Where is the orange juice? Where is the thing we were going to have for tea? The aisles were full of carts and cardboard and people going ‘excuse me, where is the cheese?’

My head started pounding, I got ringing in my ears, my eyes were itching and I just couldn’t concentrate or breathe properly. Quite horrid. It’s  never happened before that I can remember and this experience has spooked me a bit. I feel quite uneasy about what an effect it had on me. AND I HATE IT. Hate how the illness was in control of me. How the simple act of shopping which I was able to do, is now something I’m over thinking and am worrying about. Yes I could do online shopping but I don’t like that very much, that feeds my hermit-ness too much.

May 31, 2018

May list

Posted in May, Monthly update tagged , , , , , , , at 6:14 pm by viewfromthisdesk

May is a strange month. Bat work starts in earnest and I’m usually struggling to adjust my sleep patterns. This year has been no different.

Theatre this month was an NTLive transmission of Macbeth. I umm’d and ahh’d about going after how brilliant the RSC transmission was last month, I was offered a bat survey job the same night too but I went because I love Shakespeare. Alas, I have learnt the hard way that I do not love Rory Kinnear or Macbeth set in a post apocalyptic civil war type zombie setting. I left in the interval and wish I’d said yes to the survey. I also went to see the local am-dram group do an evening called ‘Once upon a song’ which was as the name suggests; different songs from films and musicals etc.

Cinema was ‘The Mercy’ with Colin Firth. Interesting subject matter but some of the camera angles made me feel quite queasy

Music was a band called ‘The Pleasuredome’ who were at an 80’s night fundraising event.

Films I watched were ‘Pitch Perfect’ 2 and 3, ‘Stronger’, ‘Molly’s Game’ which I’d wanted to see at the cinema but never made it and ‘Film Stars don’t die in Liverpool’

Remember last month I took part in a quiz in a pub? We thought 14th out of 16 teams wasn’t too bad.  So we went to the May one and came 5th out of 9 teams. Not sure that’s much better than before but as working that out involves maths, I’m not going to try. I can’t go to the June one because I’ve got a bat thing scheduled but if it rains I guess we’ll end up at the pub.

Books in May were ‘My Husband’s Wife’ by Jane Corry and ‘The Other Woman’ by Sandie Jones – both new authors that I want to now read more by, ‘The Misbegotten’ and ‘The English Girl’ both by Katherine Webb, ‘All fall down’ by Jennifer Weiner which was all about maintaining the perfect facade for the world whilst your life is actually going to pot, was a bit too close for comfort. ‘The Shadow Wife’ by Diane Chamberlain, ‘Never Alone’ by Elizabeth Haynes, ‘In her Wake’ by Amanda Jennings, ‘Close to Home’ by Cara Hunter and ‘The Stranger’ by Saskia Sarginson.  Only ten books this month, slightly more than last month – you can tell my evenings are busy with bat stuff now!

Health wise, it’s much the same, the things that were playing up in April have not really eased up. My joints are bad, even the warm weather hasn’t helped improve matters because when it’s warm I try and do too much which is stupid. I saw a new doctor about the lump on my foot which has been there for about fourteen months. It’s a curious situation as I hate feet – especially my own, so having someone up close and personal was utterly cringe. So it transpires I have a cyst of some fancy name and it’s never going to go away on it’s own or with what my GP and I were doing. So under the knife I will go again. Apparently they have to cut down to the bone joint and remove the cause of the cysts which are usually bone spurs. On occasion, metal rods have to be inserted to immobilize the joint. All under local anesthesia!!! And because Warwickshire NHS are flipping brilliant, I have had my pre op today and actual op booked in for June. Is 2018 my year for removing all my curious lumps and bumps?!

Bat wise its been a tiny bit bonkers. This month I’ve done three bat walks, one bat box check, one roost count, one building survey, two and a half dawn surveys and five dusk surveys. Typing it out doesn’t make it seem like much but I know it felt like much more each week. There has also been the usual increase in care call outs.

My desire to hermit has not gone away and having lots of bat work has helped because it’s dark and no one has to be chatted to for a couple of hours. Except the bat walks, when I have to turn on the charm and enthusiasm then. I’m over thinking things and finding the glass half empty in everything. Comfort eating has returned with vengeance and so my dislike of myself has the added ‘greedy cow, you’re disgusting, of course no one likes you’ layer. I’m avoiding social situations if I can and I’m not sleeping. Nothing like a 3am conversation with yourself to dredge up tonnes of self negativity and criticism. During the day I’m trying to work against these thoughts by focusing on the garden, watching stuff grow, seeing seeds emerge, planting out vegetables, pruning and weeding and supporting. My sweet peas match my clematis which was utterly unplanned but looks beautiful.

This too, shall pass.


May 1, 2018

April news

Posted in April, Monthly update tagged , , , , , , at 8:38 am by viewfromthisdesk

The Easter bunny forgot where I lived and I didn’t get any Easter eggs so I’m still sulking as I type this April summary:

Theatre was Wicked at Birmingham Hippodrome for mine and the boy’s 21st anniversary and I also saw a transmission from the RSC of MacBeth.  Possibly the best version of MacBeth I’ve ever seen actually, and I’ve seen it lots.  I also fulfilled my bucket list wish of actually going to the RSC and I saw ‘Duchess of Malfi’ by John Webster, except it wasn’t the main RSC theatre, it was the smaller Swan theatre at the back so I’m not sure if that counts.  I saw the comedian Joel Dommett, he of Celebrity Jungle fame.

Cinema was a fail this month, my own fault because I didn’t want to see Peter Rabbit with my friend because I’d be surrounded by ankle biters and I’m allergic to those.

Music was a Bon Jovi tribute band and the Marabooboo Allstars again.

Films I watched were My Cousin Rachel, Paddington 2, The Limehouse Golem and Flatliners (2017).  It is very true that remakes are not a patch on the originals.

I also took part in a quiz in a pub.  I was impressed that we didn’t come last.  14th out of 16 teams isn’t too bad.  Although I wish we’d come last as they won a unicorn hobby-horse.  Super jealous with that.  It’s hosted every month so apparently we’re going again in May if only to aim for coming higher than 14th.

I was working away the first week of April and the workload is very sporadic, so I have occasions when I can read lots.  Books in April were ‘I See You’ by Clare Mackintosh, ‘The Stolen Marriage’ by Diane Chamberlain, ‘Those Other Women’ by Nicola Moriarty, ‘The Idea of You’ by Amanda Prowse, ‘The Night Falling’ and ‘The Hiding Places’ both by Katherine Webb and ‘The Twins’ and ‘The Other Me’ both by Saskia Sarginson.  Only eight books this month, which isn’t shoddy I know but compared to other months that’s quite poor

Health wise, it’s the same old, same old.  I did too much when it was sunny and suffered as a result.  The old niggles in my hips, back and pelvis have returned so I’m back on the crutches but I have new sparkly black crutches which are pretty cool.  I’ve felt incredibly down this month, really sad and empty.  I’m finding it easier to hide away and hermit than go out and do stuff, which I know you’ll find hard to believe with the list above.  I don’t want to see people, don’t want to talk to people, don’t want to interact or be around others.  I’m finding it tricky to converse or relax.  I just want to hide away.  So I’m setting myself a challenge that May has to be different.  I have to be more positive and approach things from better angles.  I’ll be using social media to help me remember good stuff, asking friends to remind me of good times or memories.  Get them to recommend books or films and be more present.

I also hosted a bat care workshop to try and get more people interested in the magical world of the critters.  Nine people came and crammed into my kitchen, it was not without its worries and stresses – especially with my hermit wish.  Never done one before, didn’t have a clue what I was doing and blagged it spectacularly.  I set it up as a two hour thing and they didn’t leave for three and three-quarter hours instead.  I’d like to hope it’s because they were interested and entertained, not because I locked the doors and hid the keys.

So whilst on the outside I’m presenting a façade of cheerfulness and confidence, inside I’m a bit of a mess if I’m honest.  Getting out of bed and getting into the big wide world is super hard each day – I just want to hide away.  I don’t know why I feel like this, please don’t ask me to explain it because I can’t.  I’m being honest about it, be grateful with that.  I’m going to work hard at it because I want May to be different, I want this to pass.


March 31, 2018

March update

Posted in March, Monthly update tagged , , , at 12:12 pm by viewfromthisdesk

I’m not sure if people are really interested in these end of month posts but hey ho, here is my March summary:

Theatre was supposed to be ‘The Duchess of Malfi’ but snow stopped that, hurumpf.  I saw live transmissions of Oscar Wilde ‘Lady Windermere’s Fan’ and then Julius Caeser. I also saw comedians Reginald D Hunter, Bill Bailey and Sarah Millican.

Cinema was ‘I, Tonya’.

Music was Dan Reed & Danny Vaughan from Tyketto which was an amazing evening. Also Marabooboo Allstars who are a local band I’ve seen before.

Films I watched were ‘Wonder Woman’, ‘Hampstead’, ‘Gifted’, ‘The Shack’, ‘Daddy’s Home 2’ and ‘Una’

I’d challenged myself to read new authors this month.  I started with ‘A Secret Garden’ Katie Fforde who isn’t new but her book had the borrower receipt in it which inspired finding those books that someone else had read. One of those was ‘The Marble Collector’ by Cecelia Ahern.  I also read ‘A Daughter’s Secret’ by Eleanor Moran which was my first new author, ‘The Quality of Silence’ by Rosamund Lupton, ‘A Country Escape’ by Katie Fforde, ‘The Affair’, ‘Goodbye Gift’ and ‘The Missing Husband’ by Amanda Brooke, ‘My Husband the Stranger’ by Rebecca Done, ‘The Fifth Letter’ by Nicola Moriarty, ‘The Dark Angel’ by Elly Griffiths, ‘The Mistress’s Revenge’ by Tamar Cohen, ‘Last Kiss Goodbye’ by Tasmina Perry, ‘A Half Forgotten Song’ by Katherine Webb, ‘Secret Lives’ by Diane Chamberlain, ‘The Next Best Thing’ by Jennifer Weiner, ‘See Me’ and ‘Two by Two’ by Nicholas Sparkes another new author although I’ve seen plenty of his films adaptations, ‘No Place to Hide’ by Susan Lewis and ‘Small Great Things’ by Jodi Picoult. Twenty books in one month.

Health wise, I was super disappointed when my injections were cancelled on March 2nd because of the wretched snow.  This was reschedualled for the 16th instead. Dr Milne was very impressed with the scar sites, he claimed he couldn’t see where he operated. So I had some more steroids injected, I bled everywhere and then complained all evening about how itchy and annoying my ears were. The scars and surrounding areas were purple and bruised and sore the days after but he doesn’t think he’ll need to see me again – I’m welcome to just make an appointment if I’m concerned. I’m hoping this is the end of it though.

I had a random text message from my doctors saying I needed to have an MMR injection.  Now, I’m sure I had this when I was about ten back when it was very new but they couldn’t find a record of it and because there’s a measles outbreak at the moment, it was better for me to potentially have the injection twice than to catch measles and die.  It was a very cheerful experience.

The headaches have eased still but I’m struggling to get decent sleep, I’m not falling asleep very  well and then getting short nights. I’m grumpy and miserable but don’t know what to do about it just yet other than persevere and wait for things to return to whatever normal is.

I also had to see a new dermatologist about another lump I’ve had for a while.  It was also a new hospital to visit on my hospitals in the surrounding areas bingo card.  Lovely doctor, clearly only just graduated medical school and not been beaten down by the system into a drink dependency existence yet.  He poked it, went ‘hmmm’ took a photo and said he’ll refer me to Orthopaedics instead. The waiting begins again. I’ve got an appointment for early May.

So in the space of a week I had the MMR injection, my ears injected and my new(ish) lump poked at.

On the day of my last ears appointment, I had my first bat care call. It was actually a good call in the end,the bat had escaped through the thumb hole of the shoebox and flown beautifully around the finders kitchen before I arrived so I just gave him a check over and relocated him into a convenient bat box on the table wall of the house. Out of three calls this month, at least one had a happy ending.

Reading this, I’m impressed with how much I’ve done. I know it’s an exceptional month and come May, it’ll be an empty diary aside from bat stuff. Keeping busy is good and I know I’ve read so much because I’m not sleeping well. I’m hoping that April is less books and more sleep for sure!

March 3, 2018

And snow stops play

Posted in March tagged , , , , , , , at 11:49 am by viewfromthisdesk

I was really looking forward to March, the beginning of the month had so much planned and it was exciting stuff.  But then it snowed and because we don’t get snow all that often, life stopped.

March 1st, Thursday. A normal day by any other standards and until then, this place in which I live hadn’t really seen any white stuff, it had been bitterly cold but no snow.  Thursday lunchtime it was kinda trying to snow and schools kicked all the ankle biters out at lunchtime and my boss decided he wanted to be somewhere else, so leaving at lunchtime was for us too.  I didn’t mind, I had PLANS for the evening.  Plans that I’ve been hoping and dreaming for all my life.  For I was due to go to Stratford, home of the Bard, to the theatre.

Going to the theatre in Stratford is a bucket list item for me.  It’s one I’d like to manage this year if I can.  Thursday night was supposed to be my bucket list achievement.  A friend and I were going to see The Duchess of Malfi by John Webster, put on by the RSC in Stratford.  The theatre announced it was still going ahead but the roads were getting more and more dangerous.  It was decided that rather than end up in a ditch, we would not go.

We’ve got vouchers to spend on a future performance, the theatre was very good about that.  There is still hope that I will get there this year.  It was a massive disappointment but I have to be sensible.

Then Friday 2nd March was a Big Event Day.  It is hard to explain why it was so important to me but for those that have followed my journey know that Friday was injections day.  Not only that, it was due to be my last injections day.  Except Friday the roads were awful and the police were telling people not to travel.  All schools were closed, most workplaces were giving snow days and after ten minutes of opening, no shops had bread or milk or wine.  We were in a state of emergency, honestly.

So my injections have been delayed by two weeks.  I’m disappointed but being safe is more important than anything else.  I have to be realistic about this.  I waited and saved for so long, another two weeks isn’t going to change anything for the worse.  Be patient should be shouted at me wherever I go.  If I went anywhere, that is.  I’ve not ventured outdoors since returning from work on Thursday.

It’s now Saturday.  I have tickets to see a comedian tomorrow night at a venue in Cheltenham and tickets for a different comedian at a different venue in Cheltenham on Monday night.  Two nights that I’ve had tickets for for over six months.  I have everything crossed that the events are not cancelled and that the roads are clear.

For the first six days of March I had something in the diary for every evening.  So far, the first three haven’t happened.  Blooming snow.  And I have to be so careful in this weather.  I’ll fall super easily and hurt myself which could lead to a new forever issue.  I can’t risk getting cold because it leads to other issues which I could do without right now.  ME doesn’t cope with cold weather very well.

So, having not ventured outside since Thursday lunchtime I’ve been reading more – there’s not much else to do aside from watching the shapes and light patterns of the snow outside.  In February you’ll remember I challenged myself to read more autobiographies, I read two and really enjoyed it – I surprised myself so I’d like to carry that on through the year – although I’ll need to find this section in the local library which seems to have shrunk.  When I was in there this week, I was surprised at the amount of open space, lack of bookcases, lack of books.

My March challenge is new authors.  You’ll have noticed with my lists that I have a set of preferred authors and I binge read them.  So when I was in this week, I picked up a book from the returned shelves of someone new.  I also found the receipt of the list of borrowed books of a previous borrower within the pages of one of my books.  I’ve decided I’m going to try and read these too.  I’m letting my reading be led by fate or magic or something.

February 28, 2018

February summary

Posted in February, Monthly update tagged , , , , , , at 1:05 pm by viewfromthisdesk

Continuing the theme of letting you all know what I’ve been up to, here is my February summary:

Theatre was ‘Flashdance’ at Cheltenham Everyman which was great. I also saw a live RSC transmission of ‘Twelfth Night’ which was very funny and an NTLive transmission of ‘Cat on a Hot Tin Roof’which was good but a bit thought provoking and raw for my state of mind at the time.

Cinema was ‘Three Billboards outside Ebbing, Missouri’ which was really good if a bit dark.

Music was a Rammstein tribute band and a band called ‘Satellite Down’

Films I watched were ‘John Wick 2’, ‘Table 19’, ‘Spinal Tap’, ‘The Last Word’ and ‘Seven Pounds’. I wouldn’t necessarily recommend any of them.

I’d set myself the target of reading at least one autobiography in February and in the end, I read two very different ones.  Books I finished were ‘The Husbands Secret’, ‘The Last Anniversary’ and ‘Three Wishes’ all by Lianne Moriarty, ‘My Autobiography’ by Guy Martin, ‘The Day you Saved My Life’ by Louise Candlish, ‘How to be Champion’ by Sarah Millican, ‘Things I’d Wished I’d Known’ by Linda Green, ‘The House on Sunset Lake’ and ‘The Proposal’ both by Tasmina Perry, ‘And Then it Happened’ by Linda Green, ‘The Other Woman’ by Laura Wilson, ‘My Everything’ by Kate Marsh, ‘At the Waters Edge’ by Sara Gruen and ‘Human Remains; by Elizabeth Haynes.  This last book was addictive, I couldn’t put it down even before the twist happened and then you were just waiting to see how it all overlapped and came together.

Health wise, it’s been a curious mixture.  The second lot of injections made my ears go purple and bruised and scabby which I wasn’t overly pleased with but three weeks on that’s all faded and they look okay again now.  I do need more people to notice how flat and tidy my ears look though!  I have another appointment on the 2nd March which I hope will be my last one.  I’ve spent over a months wages on each ear now and I really, really need the spending to stop.

I’ve not had any major headaches all month which I’m super pleased about.  I’m beginning to wonder if my headaches are linked to my mental health and stress levels, it will be interesting to see how the headaches behave over the next few months as bat season starts up again and I get busier.

I succumbed to the coughing-flu lurgy that has been doing the rounds, I don’t think many people escaped that.  It was tough to keep well during that; too much coughing would trigger an asthma attack and not enough coughing just meant I was choking on nothing.  My whole being felt like I’d been in a fight and I ended up with a few days off work just being horizontal and trying not to breathe or move.  My ME obviously wasn’t great during this time but I couldn’t manage anything to any degree.

February 15, 2018

Six weeks words of wisdom

Posted in February tagged , , at 12:19 pm by viewfromthisdesk

I’ve mentioned before I’ve been keeping a diary this year to track extra meds or symptoms etc.  I’ve also been using it for notes about fun things like nights out or books I’ve read.  I then started jotting down inspirational things I’d found or seen or heard.  It may be pictures off the internet, song lyrics, quotes from a book.  As we’re half way through February, I thought I’d share them.  You may be able to send me some more.  I write them in random pages of my diary so they’re little surprises when I find them again.

* (January 1st had this one) Today is the first page of a 365 page book – write a good one.

* It is said some lives are linked across time, connected by an ancient calling that echoes through the ages.

* You can’t go back and change the beginning, but you can start where you are and change the ending.

* If it doesn’t challenge you, it doesn’t change you.

* Those who don’t believe in magic will never find it.

* Happiness can be found in the darkest of times if one only remembers to turn on the light.

* Confidence is sexy – walk into a room and own it!

* Sometimes I feel like giving up.  Then I remember I have a lot of people to prove wrong.

* You don’t always have to be a rock star.  It’s okay to be a groupie.

* Just because you took longer than others, doesn’t mean you failed.

* ‘Cause nobody wants to be the last one there // ‘Cause everyone wants to feel like someone cares. // Someone to love with my life in their hands. // There’s gotta be somebody for me like that. // ‘Cause nobody wants to go it on their own // And everyone wants to know they’re not alone. // Somebody else that feels the same somewhere. // There’s gotta be somebody for me out there. (Nickleback)

* Enter freely. Go safely and leave something of the happiness you bring! (Bram Stoker)

* I remember feeling lost.  It was bloody awful.  Hope you find your way.

* Positive thinking isn’t about expecting the best to happen every time.  But accepting that whatever happens, is the best for the moment.

* Believe only half of what you see and nothing that you hear. (Edgar Allan Poe)

* Some days, she has no idea how she’ll do it.  But every single day, it still gets done.

* You have to stop thinking you’ll be stuck in your situation forever.  We feel like our heart will never heal or we’ll never get out of this impossible struggle.  Don’t confuse a season for a lifetime.  Even your trials have an expiration date.  You will grow, life will change, things will work out. (Brittney Moses)

* Ships don’t sink because of all the water around them.  Ships sink because of the water that gets in them. Don’t let what’s happening around you, get inside you and weigh you down.  Stay up.

* Don’t wait for things to get easier, simpler or better.  Life will always be complicated.  Learn to be happy right now.  Otherwise, you’ll run out of time.

* I’m not a stranger to the dark // Hide away, they say // ‘Cause we don’t want your broken parts // I’ve learned to be ashamed of all my scars // Run away, they say // No one will love you as you are // But I won’t let them break me down to dust // I know that there’s a place for us // For we are glorious. (This is Me, Greatest Showman)

January 31, 2018

January summary

Posted in January, Monthly update tagged , , , , , at 4:28 pm by viewfromthisdesk

In my end of year post I wrote about how I needed to be selfish, do more for me. My targets were:

* one theatre experience a month.

* one music or cinema experience a month.

* tea and cake with friends.

Unofficially, I also wanted to read more. A friend signed up to do a reading challenge of two books a month which I thought was brilliant but I didn’t set myself a target.

In 2018 I started keeping a diary, not a ‘Dear Diary’ kinda thing but more a medical tracker and emotional calculator. Brilliant for keeping notes on all the extra medications I took for whatever reasons. This was also useful for noting down the positives that happened in terms of film, theatre and books.

So my January summary:

Theatre was a transmission of Oscar Wilde’s ‘A Woman of no Importance’ which I enjoyed much more than I thought I might even if I did ask loads of questions. I also saw ‘Strangers on a Train’ at the Alexandra Theatre. This is a classic apparently and was turned into a Hitchcock film.

Cinema was ‘The Greatest Showman’ which was brilliant.

Music was an AC/DC tribute band.

I also found a new films on DVD by post provider which has been really good, I’ve missed Lovefilm envelopes and our broadband is rubbish so streaming films isn’t an option.

Films I watched were ‘White House Down’, ‘New Year’s Eve’, ‘Girl’s Trip’ (not recommended) ‘Love is Strange’, ‘Enduring Love’ (not even a very young Daniel Craig could make it tolerable) ‘Flatliners’ (the original 1990 version), ‘Pressure’ and ‘House’.

Books I finished were ‘The Ghost Fields’, ‘The Woman in Blue’ and ‘The Chalk Pit’ all by Elly Griffiths who is one of my favourite authors. Also ‘The Art of Hiding’ by Amanda Prowse, ‘Mystery in the Village’ by Rebecca Shaw, ‘Summer at Sea’ by Katie Fforde, ‘Diary of an Unsmug Married’ by Polly James which was so rubbish I almost gave up at least five times, ‘Precocious’ by Joanna Barnard, ‘The Swimming Pool’ by Louise Candlish and ‘The Wrong Girl’ by Laura Wilson.

I held a crafternoon for MIND which was fun. I raised just under a hundred pounds which was overwhelming. The just giving page is still open if you want to add to the fund. Just search for me on the just giving website. We decorated fairy doors, there were sequins and gems and flowers and pens and watercolour pencils everywhere. And maybe some biscuits – M&S ones no less!

Health wise, it’s been tricky. Post-op itching aside, the ears haven’t been too bad although I did announce at 3am about ten days after the op that I regretted having them done because I couldn’t sleep on either side which is my default and preferred sleeping position. The steroid injections were super painful and horrid. There are no words to describe how awful the experience of twelve injections in each ear actually is. As much as I complain about this process or winge about the cost, it has absolutely been worth it. I feel like I’m a different person, I don’t need to hide, I am worthy.

I have been struggling with headaches again though. First one was five days then three and a bit days long with one non-headache day between but I don’t think it’something I need to see the doctor about yet, I am fairly sure I know what caused them. My first incapacitating day was the 23rd so rather than dwell on how pants that day was, let’s focus on how I managed all those days in the month before without succumbing to the dark duvet palace.

The last week of January I picked up some sort of lurgy, the usual sore throat, bunged up nose, red eyes, sore sinuses. It’s hard being positive and cheerful when one looks and feels like crap.

My ME has been more tricky to manage, I’m struggling to maintain an even keel. I’m quite fed up, quite grumpy and emotional, I can’t stand crying for no reason but it seems to be a thing. I’m not controlling my pain levels, I’m not sleeping well, I’m just not managing.

So I’m back to a day by day, hour by hour plan. I’ll survive. I’ve gotten this far, one more day is possible too.

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