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.

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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 2, 2017

Snoring: suffocation or separation?

Posted in March tagged , , , , , , at 2:43 pm by viewfromthisdesk

I am very aware that I only write nice things about my husband on this blog.  He freely admits he’s never read any posts but I feel I should be polite and respectful about him.  After all, he’s put up with a whole tonne of medical rubbish and supported me through the drama that is my life since 24.

Alas, I can pretend no more.  My husband is a nightmare.  I cannot rose-tinted glasses it any more.  There is no half-full, positive spin to the situation.  I am beginning to hate him and that’s not healthy.

We’ve just returned from our summer holiday.  We have to take it in February because of work so it’s a nice experience to get away from grey, dreary, miserable home and go somewhere sunny.  Yeah, the temperature change on our return is a shock and it’s horrible in the summer when everyone else is going away and we’re not but hey ho.  As usual, I caught some germ ridden lurgy on the plane back and coupled with jet lag and everything, I’ve been feeling utterly wiped out and quite down in the dumps.

Hubby is immune to all lurgy and is just bouncing around the place, relaxed, refreshed and showing off his tan at every opportunity.  I’m shattered.  I just want to sleep.

And herein lies the problem.  For some unknown reason, he’s snoring really, really badly.  Since we came back it’s like sleeping with what I imagine a bunged-up hippo would sound like.  He’s utterly unaware of it though.  It doesn’t make an ounce of difference which position he’s sleeping in, whether he’s coated in a thick layer of vics and has olbas oil all over his pillow, whether he’s had a shower immediately before bed or not.  And in my lurgy-miserable-exhausted state, I just want to suffocate him.

For a couple of evenings I’ve moved to the spare room.  My leaving the bed wakes him up and he always tells me he doesn’t want me to go.  But he doesn’t understand in his slumbering state that I WANT and NEED to sleep.  He says he’ll try not to snore but I’m not sure he really has any control over it.  If I stay in bed, I’m staring at the ceiling, bunching up the duvet in my hands in an effort to control my urge to punch him really hard in the ribs.  I’m tense and angry and not at all relaxed or calm or anywhere near sleep.

But the spare bed is not my bed.  I do not have a me-shaped dent in the mattress where I curl and fit perfectly.  The pillows are not covered in sleep-spray in my foolish effort to drug myself into slumber.  The room is not perfectly dark, the shadows are different and it’s not mine.  He refuses to sleep in the spare room, there is no discussion about it once I ask and he says no.

So, at 1.30am I moved to the spare room.  At 3am this morning, when I’m still wide awake and I know the alarm is going off for him in a couple of hours time and he’ll wake me with his gallumping around, I’m in the spare room, crying with frustration and exhaustion.  I don’t know what to do.

I’m working every day this week because we’ve returned to a busy and full diary.  Yey.  But I’m a zombie.  And it’s hard not to be grumpy ALL THE TIME.  I’m fighting the urge to have an afternoon/evening nap because my OT says that’s the wrong thing to do.  And I want to sleep AT NIGHT like a NORMAL person.  ARGH.

I thought vics and olbas oil might help him breathe easier if he’s got any small trace of my germs but it’s not working.  Waking him up and asking him to change position isn’t working.  He refuses to move to the spare room and I don’t sleep much if I do.  I just can’t win.

So.  People of the blog-reading-pastime world.  What on earth do I do?  Make the spare room mine and separate?  Or just suffocate him so it’s silent?

 

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.

January 29, 2014

Trying to explain.

Posted in Health stuff, January tagged , , at 9:27 am by viewfromthisdesk

My last post didn’t really help anyone. You worried and I couldn’t handle the contact it created.

You know when you take a jumper off and sometimes you get stuck in the body bit? I feel like that. It’s dark, my hands are halfway up the sleeves and useless and I’m not sure whether to start again. And asking for help is futile because I don’t know if I want arms or head out first or actually, whether I want my jumper back on now.

So, I’m taking this week to try and organise my head. To calm the thoughts and make some order. I am being entirely selfish. Books to read and films to watch and tea to drink. I’m enjoying the silence of my days and hoping for a good frost tomorrow as forecast so I can curl up on my beanbag in the kitchen and watch the garden sparkle and look pretty.

Normal service will hopefully resume soon. Hopefully.