July 1, 2018

June

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.

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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.

 

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.

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.

June 29, 2017

Episode 4 Doctor in the House

Posted in Health stuff, June tagged , , , , , at 5:41 pm by viewfromthisdesk

This has been the episode I’ve been most looking forward to as for a while I’ve known it was about exhaustion, ME, fibromyalgia and similar conditions.  I wasn’t expecting to get a massive breakthrough, but I was hoping for enlightenment.

I totally resonated with the statement ‘I just want to feel normal, I don’t want to be this tired, I just want the pain to go away’ and then the most real one ‘they give out pills and then some more pills and then different or stronger pills and then pills for the side effects’ this is SO TRUE.  Ten minute appointments with a GP or a consultant literally just gives you a new prescription.  Meds help for sure, but they’re not the answer.

The doctor talked about how fibromyalgia and ME are mystery illnesses.  This is very true.  Doctors have told me on more than one occasion that fibro and ME are diagnosis’ given out when nothing else applies.  When all other things have been ruled out.  And indeed, that was true in my case, I spent years having tests for thyroid issues, scans for MS, blood taken for Lyme and lupus and vitamin deficiencies, electrical hook-ups for nerve damage assessment.  These were done repeatedly over these years of an unknown title to what was wrong.

I had a course of B12 injections which I didn’t think changed anything but I know some people find them amazing.  I also went gluten free for six months and felt more awful after that than ever before but again, I’ve found some people who swear by GF living and the improvements this gives to their ME.

I’ve never gone diary free but I don’t consume a huge amount of dairy.  I also don’t drink alcohol anymore.  I am aware that some people drink to numb the pain.  It’s utterly understandable, I would.

I saw the frustration in the faces of the family members.  The fed-up-ness of there not being answers, of the restrictions in the lifestyle and the reliance on pills.  And to some extent, there’s an element of suspicion – it can’t be as bad as they say.

The wish to maintain a normal life in terms of work or family responsibilities is so true for anyone with one of these invisible illnesses.  We push ourselves to be normal whilst physically struggling.  We want to be a good partner/parent/friend.  We cannot physically be that good but we push and push and push.  And yes, I’ve been told so many times that it’s not real, that it’s in my head and I just need to change my mindset or snap out of it or get (pay for) some CBT therapy so I retrain my brain to ignore the pain and exhaustion sensations.

Ignoring the pain and exhaustion and not being kind to ones self is a common thing with ME and fibro.  No one believes us so why should we believe ourselves?  Not coping with life, feeling like a constant failure is very real.  Regardless of whether you’d say that to another person or not is irrelevant, you have a reduced number of friends with ME and fibro anyway.  People are sick of you cancelling or leaving early or not getting wasted with them so they fall out of your life.

Going GF didn’t help me.  I don’t eat a lot of sugar or junk food, and whilst rainbow eating was fun, I didn’t feel any different then either.  It brought other issues and challenges as well but eating more fruit and veg is always going to be a good move and I’m working towards that every day.

I was hoping I’d get some magic solutions from the program, hoping I’d get something new to try or think about.  I’m struggling this fortnight, I’m sleeping during the day more, having chronic headaches and brain fog.  Alas, there is no magic wand, the Doctor was not in my House to solve my issues but it was helpful.  I felt like I wasn’t alone, I saw myself reflected in the people on the show.  I wasn’t a liar, I wasn’t imagining it.

I’m very certain that my mental health has a huge impact on my physical health and that’s something that maybe I need to focus on more this year.  Stop worrying, stop stressing, try and reverse or remove the depressive feelings I get.  I have no clue how I’m going to manage this but I know I have you guys to help me get through each day; one day – nay, one hour – at a time.

March 28, 2017

Laidlaws Rule

Posted in March tagged , , , , , , at 10:42 am by viewfromthisdesk

So I was mooching around the social aching face the other day and came upon a posting by a website called 22 Words.  I’m not sure if this is where it all started but it’s where I found it and I’m not bothered to search any further.

This posting stated there is a new thing called ‘Laidlaws Rule’ and this was invented by someone called Marc Laidlaw.  I’m sure it’s not at all technical or full of science but it is incredibly fun.  This rule states:-

‘The first line of almost any story can be improved by making sure the second line is ‘And then the murders began.’ ‘

Now, if I’m making the effort to battle through the finger joint pain and screaming bones everywhere else to type this post and share this with you, then you have to try this rule.  It is quite simply brilliant.  And means I got to pick up proper books for a few minutes too.

Now, as the rule states, this works for *almost* any story.  It doesn’t work for crime authors necessarily, especially not Simon Kernick who generally kills at least nine people in the first half dozen words.  It also isn’t quite so great on Haynes manuals for early Ford cars which form a large chunk of our bookcase.

However.

Take ‘Thomas and a Dragon’ based on the Thomas the Tank Engine Series by The Rev W Awdry.  Applying #LaidlawsRule to this, is as follows:

One morning the Fat Controller came to see Thomas.  And then the murders began.

You cannot tell me you did not spit your tea out a little bit at that?!

‘The Inside Track’ by Jake Humphrey

In the autumn of 2008, I was scooped up from the friendly, colourful, smiley world of children’s television and pitched head-first into one of the most high-profile, ruthless and exciting sports on the planet: Formula One.  And then the murders began.

‘Rockers and Rollers’ by Brian Johnson

When we were kids in Dunston, there were places we were told not to go, and there’s where we went – basically, anywhere dangerous.  And then the murders began.

‘The Bucket List to Mend a Broken Heart’ by Anna Bell

I glance up at the oversized clock on the office wall and it seems to be saying it’s four o’clock.  And then the murders began.

‘My Autobiography’ by Guy Martin

I’d just left the pits after the fuel stop.  And then the murders began.

 

I appreciate that three of these books are autobiographies, but that seems to be all that we have on our bookcase in proper book format since I’ve had to move to my kindle.  Two of the above aren’t autobiographies and it’s still very funny.  So, distract me from this awful joint pain and grab the book(s) nearest to you and comment how #LaidlawsRule changes your story.

 

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.

July 5, 2016

Learning the art of balance

Posted in July tagged , , , , , , , at 2:29 pm by viewfromthisdesk

I’ve been utterly awful at the whole ‘pacing and prioritising’ thing that the medical peeps bang on about.  I’ve been brought up with the ‘if something needs doing, get on and do it’ attitude and approach.  It’s hard to change something that has been forced into your brain for so long.

This year has been the most challenging for me so far.  I’ve spent way more time on my crutches than in any year previously.  I’d like to claim it’s because I want to show off my gorgeous coloured sticks but it isn’t.  My joints and balance have been particularly horrendous this year and I cannot attribute it to any particular reason other than this condition is deteriorating.  I’m not doing as much physical stuff as I used to or indeed want to.  Any fun event is wrapped in days of resting and relaxing and neoprene things.  My bat work is set up on the basis of not much walking around on site and me being somewhere I can sit for the survey which is neither professional or ideal.  Concerts are few and far between this year.

On the back of all that misery however, I had a light bulb moment last week which I feel deserves praise.  I was working away for ten days, at what I call my temping job.  It’s a tough gig though.  It’s a proper eight to nine hour day, it’s constantly busy and noisy and bright.  There is nowhere to hide, nowhere to escape to when it gets too much and certainly no flexible working hours.  It always makes me ill and I’m absolutely aware it makes me ill so nothing *should* be planned for the time I’m temping.  Nothing except sleep and more meds.

In previous years, I’ve taken the approach that of course I can do it all.  Of course I can temp and keep house and do bat surveys and have a social life, of course I’ll be fine.  With bad consequences.

This time, I literally just did temping.  The house is now a mess, I turned down bat work and I had no life outside of the nine hour day.  It was work-home-pyjamas-sleep.  So I managed some time of balance.  Not in the literal sense because I was on my multi coloured sticks for the whole time, but balance in terms of not trying to do it all.

But how do I now not over compensate for this week of being sensible?  This week I have booked three surveys with another as a possible.  I desperately need to turn into some crazy person with the ability to clean the house (even though housework is one of my worst pain triggers) and make it all look normal and respectable.  I just can’t do everything in a sensible and balances fashion, I’m wading through treacle whilst being stuck inside a constricting jumper.  I can’t employ someone to clean because I can’t afford it.  I can’t turn down temping or bat work because I can’t afford to do that too.

I’m clinging to the ‘look how well I did last week’ attitude in the hope that no one will notice what a mess I’m making of this week!

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