August 24, 2017

Things are far from ideal

Posted in August, Health stuff tagged , , , , , at 12:56 pm by viewfromthisdesk

It’s no secret I like food.  You only have to glance at me to know food is high on my list of daily obsessions.  And these curves take some maintaining, it has to be said.

So when I go off food, it’s a glaring red light that I should pay attention to.

Since first thing Sunday, I’ve had a continual feeling of nausea.  I can’t taste anything and I’m just not hungry.  The smell of food is making me more queasy.  And I’m not sleeping.  Yeah, back to that hilarious combination of ME and insomnia.

I don’t know where this not sleeping, not eating thing has come from.  Friday night I had an amazing night at a concert seeing an artist I honestly never thought I’d see perform live.  Saturday I had a wonderful day at friends’ wedding – it was a fun day full of laughter and love.  So much positive energy from two excellent dates.  But Sunday I felt dreadful and I thought I was just suffering the effects of two big days so I just took it easy and rested up for many hours and hoped it would pass.

But then Monday rolled around.  I’m forcing myself to eat breakfast so I can take meds.  I’m not wanting to eat lunch or tea and I know it’s not an ideal situation.  This continues into Tuesday and Wednesday.  This morning (Thursday) I’ve established I’ve lost 3lbs since Saturday morning.  Usually I’d be delighted but I know that it’s not healthy.  My jeans aren’t fitting and I just feel empty.  Lost even.

This morning after yet another rubbish, broken night of not-sleeping, I’ve resorted to taking my anti-nausea meds.  These are kept in my emergency crash box so that’s not a good start.  I ate porridge so I could take them but I couldn’t taste it and I didn’t enjoy it – I was eating because I had to.  And then I made a sandwich for lunch which I have no intention of eating if I’m honest.  I was dry heaving whilst making it, the smell just turned my stomach.  The thought of eating it is horrendous.  Maybe I’ll convince myself and those around me that I’ll eat it for tea.

It’s one thing to not be eating.  It’s another to throw not sleeping into the mix as well.  I’m at the crazy point of bat season.  I have weeks left before I too can hibernate until spring.  I need to be vertical and coping.  Not sleeping is not what is needed right now.  And to have this many awful nights in a row (6 and counting) is worrying me.

But.

And it’s a big but.

I don’t feel tired.  Usually after just one bad night, I’d be asleep in the afternoons, I’d be unable to go to work, I’d be unable to speak properly.  At the moment, none of that is happening, I’m just not sleeping.  Don’t get me wrong, I’m not saying I feel well, I just don’t feel as bad as I should be.  Aside from the ever constant metallic I’m-going-to-be-sick taste and the churning in the stomach sensation I am remarkably upright.  It was even commented on survey the other night that I’d not been seen so bouncy and looking so good for a couple of years.  It was high praise and I basked in it but knew it’s not the truth.

So I don’t know what is going on with me right now.  All I know is it’s far from ideal.  I’m not asking for hints or tips on sleeping and/or eating, I’ve tried them all I assure you.  I’m just letting you know I’m not right and your support and witty messages are appreciated.

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July 28, 2017

When the darkness wins.

Posted in July tagged , , at 4:14 pm by viewfromthisdesk

This blog post has been three days in the writing.  And I’m still unsure if I’ll press ‘publish’.  So if I do, please know that as tough as this may be to read (and I am fully aware that I may be imagining the strength of my writing skills there) this has been a million times tougher to type and be fully honest.

Recently there’s been celebrity suicides and people react with ‘but they had it all; fame, money, family, why would they need to do that?’ and it’s sad.  These people may have had what we perceive to ‘be it all’ but it wasn’t enough to make them feel worthwhile.  The glass facade shattered and let’s face it, reality sucks.

Someone (a total stranger) wrote something on a social media site last week about their suicide attempt.  To try and explain that they weren’t a coward, that they weren’t looking for an easy way out because in the moment that they were trying to cut their wrists (and it wasn’t that simple, their description was awful and raw and real) it was the strongest they had ever been.  That it hurt and it wasn’t quick but it was just the last thing they had control over.  It was a powerful piece of writing and it’s stuck with me.

I’ve never tried to kill myself.  I’ll put that out there now.  But I have often felt that it would be easier to just not be alive.  I personally feel there’s a big difference between wanting to die and wanting to not be alive but you may feel they’re the same thing.

All my life I’ve lived with not being good enough.  My Dad would punish me physically when school reports came home and it wasn’t all A’s.  Apparently A for effort doesn’t count because even though the teacher felt I’d tried my hardest in everything, if I hadn’t gotten top marks, it didn’t count.  When we moved up here, I was told by the people we lived with that anything less that straight A’s or A*’s was letting my parents down, that I’d failed them.  On GCSE results day when other friends were getting money or meals out, I was asked why I’d only gotten 2 A’s and then 8 B’s.

It wasn’t good enough.  I wasn’t good enough.  I was a blue screen error message.

On school awards night, I asked if they were proud of me.  The reply was that they’d rather I was at home studying to get better marks than collecting awards.  They went on holiday rather than support me during my A Level exams.  They didn’t take me to university like every other family in my place of residence.  They charged me £60 rent when I returned for a week the first Christmas. And then my worst offence – I dropped out of university: I was a failure, a disappointment, an embarrassment.  And although I got my degree with the OU, that didn’t count.  It wasn’t enough.

I wasn’t enough.

I’ve never been enough.  I’ve never made anyone proud.  Or at least, no one has ever told me.

At a family wedding a few years ago, the father of the bride gave a speech about brave men marrying into the family.  My Dad was not included in that speech, nor my husband.  I took that personally because if they don’t count, then I don’t either; a reminder of how I’m not enough.  I’m sure he didn’t mean it to be like that and it’s not as if I could have interrupted the speech and asked about it.  A wedding is not the place to question details.  And I can’t ask now because the moment has passed.  But it sits in my brain, a sharp stick poking away.

At school I didn’t fit in because I spoke funny / because I didn’t have divorced parents / because I wasn’t allowed to go out after school / at the weekend / use the phone / go to my end of year ball / get a job / came from a different school to begin with.  At uni I didn’t fit in because I had no family visiting me to take me shopping for food / help me settle in / because I’d worked damn hard for the financial scholarships that kept me afloat / was using uni as an escape.

Society views me as a failure.  The abuse I’ve received because I’ve not had kids is truly awful.  I’m a waste of a human being, a waste of air, what is the point of being alive if not to push out children?  No one will love me because I’m selfish, I’m not fulfilling my biological purpose.  And these are your everyday human beings, not religious fanatics who want to populate the world for a higher purpose.  I can ignore all this stuff because it’s utter drivel but it does get to you.

Historically the whole ‘when is he going to propose’ bombardment at events really niggled into my brain.  Really upset me and made me think that I wasn’t enough for him to love me that much.  I wasn’t good enough, wasn’t acceptable to his long term plans.  And then when we did get married it was that pitying ‘Oh, but you had to ask, not the same really, is it?’

When I work away, I’m ‘not the usual girl’ or I get ‘what are you doing here’ or ‘oh, it’s you’.  I’m not included in conversations, I’m ignored and treated less than politely.  I’m working my socks off to help them out but I feel like something those socks trod in.  There’s no support or gratitude, I may as well be painted the same grey as the walls.

I’ve felt ignored and left out and simply not enough and pushed to one side all my life.  Intentional or not, my feelings are mine and no one can tell me they aren’t real.

And so, thinking that my not being alive is somehow better, is not surprising.  If I can’t be enough then what’s the point?  If I’m not enough, then someone else could be instead.  I don’t feel worthy.  I don’t feel worthwhile.  I am an appallingly bad wife, terrible sister/rubbish friend/disappointing niece/absent cousin.  The doctors just gave me anti-depressants when I spoke up.  They don’t change anything, it’s not going to re-program the last thirty-odd years.  Counselling was tried at uni.  I can’t afford it now and I dislike speaking these words out loud.  Hiding behind this keyboard is as honest as I can be.  Don’t ask me if I want to talk, I will tell you I’m fine.  I can pretend I don’t know who is reading this, that you are not real.  That I am typing to empty my brain temporarily and these words will fade like I was writing in lemon juice.

The darkness that lingers in my brain never goes away.  I do try and ignore it but I’m only human, I’m still struggling.  The other week it got particularly bad.  I didn’t want to leave the house, didn’t want to see people, not even people I’ve known forever.  I didn’t want to have to talk to anyone or look at anyone – or even worse be looked at – or interact.  If Pirate Cat were still here, we would have set up the duvet palace and she would have been on Chief Cat Guard.  It’s never gotten that bad before and with hindsight, I’m concerned with how much that darkness overwhelmed me.  I’ve never shut myself away like that previously.  And yet, it happened and I fully expect it to happen again.  I’m not scared of it happening again, it’s not an issue for me but it’s a new thing to contend with.

Suicide for me is not an option for purely practical reasons; I dislike swallowing pills even though I’ve taken enough over the years.  I dislike pain even though there’s a constant white noise of it.  I couldn’t jump off or in front of.  I wouldn’t be so selfish as to have that memory imprinted on someone else for the rest of their lives.  I could not do the deed.  The darkness may overwhelm me but it’s not going to push me over the edge.

Suicide is a decision of absolutes.  There is nothing else after.  And it may be the one thing that a person has control of when the rest of their life is a whirlwind of madness.  And it’s going to be that they feel that their family, their children, their friends are better off without them.  I’ve felt that.  I’ve absolutely felt that very way.  No one would miss me as I don’t contribute anything to their lives – what can I give people the state I’m in?  Apparently, my illness is not real, I’m attention seeking, I’m making it up.

Please don’t think this is a new surprise thing – I have been honest about how I feel.  I’ve told hubby on many occasions that I’d rather not wake up one morning because I feel worthless.  I feel more of a burden that a contribution.  This isn’t something I’ve hidden from him.  I’ve told him he needs more than I can give.  And yes, he’s told me I’m daft and I shouldn’t think like that but my brain doesn’t hang onto that fact, it focuses on how crap I am, how I can’t have a proper job, how my friends and family don’t invite me to stuff because I won’t be able to go anyway.  How all this medical stuff has made me different and useless.  In the early hours when I’m not sleeping my brain goes utterly mental shouting horrible things and I listen and I save them on a loop reminding me over and over again that I am pointless.  A waste of air and cells.

I don’t know anyone who has committed suicide.  As far as I am aware, I don’t know anyone who has tried either.  Maybe I do but they keep it so well hidden.  They are stronger than I know.

Growing up I was told that suicide is the cowards way out when someone doesn’t want to face up to their problems.  Suicide is not an easy way out.  It cannot be.  You make that decision knowing the absolute tidal wave of reaction that will be triggered.  You know that those around you will be hurt beyond all comprehension but you feel that the hurt will be better than the reality.  You’ll change their lives forever but you honestly think that’s the best thing for them.  You make the decision and you follow that through.

So I understand what the writer meant when they said that in the act, they were the strongest they had ever been.

 

I am not strong.

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.

May 15, 2015

May 16th, one year on

Posted in Health stuff, Weight Watchers tagged , , , , , , , at 11:02 am by viewfromthisdesk

This time last year I was fretting somewhat about walking 5km.  It turned out alright in the end – aside from the outfit I chose to wear which is now buried in a cupboard somewhere I’m sure.  I can forget about the outfit when I remember how much money I raised with your generous help.

I decided not to do the walk this year; not because I’m a heartless individual who doesn’t care but because I just couldn’t be bothered to get off my bum and actually *do* something:  I’m lazy.

Rather than asking you for money for May 16th, I’ve been asking for stamps, for ribbons, for spoons.  It’s hardly comparable to exercise but honestly, it’s how my life is right now.

I’ve not jumped on the scales recently but I know I’ve put on loads of weight.  My last number display put me at the same weight as my wedding day which I’ve always considered to be my heaviest.  I know the numbers are bigger now.  But I’m totally unfazed by it, which isn’t great.

I know I’m more than curvy again now, but I simply don’t care.  I honestly don’t care.  I’m happy with what I’ve got.  Don’t get me wrong, I’m not shovelling bags of crisps into my face (I can’t remember the last packet actually) and I’m not scoffing takeaways 24/7, I’m actually eating reasonably but I’m just not active.  That’s the big issue.

I ache all over, I’m constantly attached to a heat pad or TENS machine.  I’m tired and I simply can’t be bothered.  Am I using my M.E. as an excuse?  No, I don’t think so.  I’m not going to walk 5km and cause myself to sleep for a fortnight and have to see a physio again.  I need to find something that fits around day work and night surveys and doesn’t hurt or exhaust me.

January 20, 2015

It’s all about the mugs.

Posted in January tagged , , , at 12:20 pm by viewfromthisdesk

My last entry to this online diary stirred up quite some interest.  Not in me of course, but in the mugs that I’d been talking about with such praise.  I feel I need to share the love, so you can all understand why I’ve been wittering on.

The first mystery parcel contained ‘Goddess’ and ‘Overworked/Underpaid’.  An additional mystery parcel last night contained ‘The Boss’  I have the bestest friends, I really do.

I’m going to save the box that one came in to put the contents of my 2015 gratitude jar into.  That way, the box is an instant reminder of a good thing as well as the notes within.

IMAG0318

 

The others I desire can be found on my Amazon wishlist:

http://www.amazon.co.uk/registry/wishlist/9FG8SFUUW5QG

Or the actual website for the whole range by this artist can be found at:

http://www.keithbrymerjones.com/

 

I’m still wobbly but down to one crutch though which is progress.  Being smothered in ibruprofen gel each night isn’t quite my version of romance, but one can’t be picky at my age.  Managing as well as can be expected which is good enough for me today.

January 8, 2015

Being honest

Posted in Health stuff, January tagged , , , , , , , , , at 1:44 pm by viewfromthisdesk

I’ve being going on for years about how I need to be more honest about how I’m feeling and how I can’t use the phrase ‘I’m fine’ to cover all my lies.

So, deep breath ….. today is a bad day.

There you go.  It’s out there.  It’s flying around like an enormous neon sign, telling the world that I’m really rather useless and pathetic and rubbish.

Last night I got home from work feeling okay, I fetched firewood, lit a fire, watched some tv and then slept for nearly two hours.  Spent the rest of the evening feeling groggy, nauseous and cold.  Went to bed and slept for twelve hours.  Failed to get up for work at the appropriate time and didn’t wake until 11.59am.

I now feel utterly rubbish.  Weak as a kitten, groggy and fuzzy and ache like I’ve been in a fight.  Really light sensitive and my hands and wrists are KILLING me.  Couldn’t put my work trousers on because after fastening my bra, I couldn’t work the zip and buttons.  So I’m in the office with soft trousers and a jumper.  Get me looking professional as heck.

If ever there was a time I wanted to be able to crawl back into a cave and hide and cry and pretend that reality isn’t happening, this is it.  Honesty is horrid.

December 28, 2014

So many numbers

Posted in December tagged , , , , , at 11:57 am by viewfromthisdesk

This is apparently my 75th post and it’s 4 years since I started writing this blog.  I know I’m erratic in my postings and emotions but isn’t that just life anyway?

2014 has been tough on a personal level. I’ve struggled with my illness and been frustrated with my abilities on what feels like a constant basis.  I have gotten to a point in my bat consultant role that I’m gaining clients by myself and booking jobs up ‘in the future’ (ie next week) but then I find myself exhausted and stressing out from the pressure I put myself under.  Stupid I know.

Physically, I’m getting used to the pains and aches and mouth alcers and blinding cluster headaches.  I don’t like them and I don’t like taking the pills to fix them but I know it’s the only solution.

Most of all this year, my emotional roller coaster has driven me up the wall.  Mood swings, short temper and crying for no reason is not something I’ve dealt with since I was a teenager with PMT.  I can’t seem to put a lid on it or get it under control.

So 2015 needs to be a year of patience both by me and with me.  I need to remember how far I’ve come and how much I’ve grown as a person these last few years.  I need to keep looking at my gratitude jar and thinking about the good stuff and the good people in my life.  2015 will be my third jar and I’m hoping it will be as crammed as the other two years.

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 ………… 😉

July 9, 2014

A new addiction

Posted in July tagged , at 10:27 am by viewfromthisdesk

I have been introduced to an app called ‘Words with Friends’ – it’s essentially scrabble by mobile and it’s been brilliant recently at helping me maintain words skills and mental awareness.

One of the things that has been affected by my M.E. is my speech.  Thinking sentences through and finding words is becoming increasingly more difficult.  I hate the fact I used to be articulate and now I stutter or go silent.  But this is helping me think of words and think of meanings and learn new words too.

Join in, help me keep the letters organised! I am MichelleY104 just search for this user name and invite me to a game.  But be gentle, I am rubbish remember!

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