October 4, 2017

A double-edged sword

Posted in Health stuff, October, Weight Watchers tagged , , , at 11:50 am by viewfromthisdesk

I’ve shared recently about my eating issues – it’s been a really tricky six and a bit weeks if I’m honest.

I have gotten over the permanent nausea feeling, this just comes and goes now and is triggered by new smells usually.  There’s no consistency to what triggers the nausea though so I can’t avoid it.  And I’ve not been ill physically, I just feel rotten but eventually it passes.

But I still don’t want to eat.  I have no desire to eat, I have no urge to apply to face.  It’s really odd.  I’m eating because I know I have to.  There’s no taste, there’s no pleasure, it’s just a requirement of life and I hate it.  I really despise the fact I’m forcing the situation.  I don’t think this is linked to my ME or my fibro either.  The insomnia is but this weird not eating thing is different.

I love food.  I love the companionship of a meal with friends.  I hate the cutlery struggles and the efforts of sitting still but eating has always been a great positive.

And the double edged sword?  Weight loss.

I’ve lost half a stone in the six and a bit weeks.  No one has noticed and that’s pants because half a stone is a decent chunk.  I’m wearing jeans that I haven’t worn for five years and I’m sure I look different.  I’ve tried to tell myself that people don’t see the gradual change but even people I’ve not seen for ages haven’t noticed.  It hurts because I want that positive reassurance about my life.  No, I *need* that positive reassurance.  I know asking girls about their weight is a bit taboo but this girl wants to know.  This girl wants to understand they’re not insignificant, that they haven’t faded into the wallpaper, that they are noticed.

I’m unsure as to how to view this current situation.  I’m struggling to be positive because it’s not fun.  And I’m having this dilemma in my head that if I think ‘I could aim for this target weight by this date’ that I’m encouraging the not eating.  I’m sure this is just my over thinking things and being particularly sensitive right now but I promise you all, I want to eat, I want to be that greedy lass you all know and love.  I don’t like not eating because I feel sick or don’t feel hungry.  It’s not me.

It’s a tricky situation because I don’t know how to manage it.  I want people to notice the weight loss and make some comment.  I want someone to slap my bum as I walk past in these gorgeous levi jeans and say ‘looking good’ or wolf whistle at me.  Sexist and derogatory as that it, I just want noticing.  But I don’t want you to notice I’m not eating.  I don’t want you to ask what I managed to force down today.  I don’t want any comments about how half a sandwich isn’t enough or I leave half my meal because I’m super full.

So notice me but don’t notice the details. What could possibly go wrong with that request?!

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August 31, 2017

One month on

Posted in August, Health stuff tagged , , , , , at 11:05 am by viewfromthisdesk

It’s been a very strange few weeks.

On the 28th July I posted ‘when the darkness wins’ and I was at this very desk when I wrote it over those few days.  I’m working away again this week but my outlook and attitude are very, very different.

It’s curious how writing that post has been very cathartic.  Admitting all those things and releasing them has been brilliant.  Yes, it was hurtful and emotional but it’s been good for me.  I can’t drag that baggage with me forever.  Whilst I’m never going to be free of those thoughts and memories, they are not dragging me down right now.

Sitting at this desk again is odd.  I remember how hard that week was, typing the words, remembering the things I wrote, revisiting stuff in my head I didn’t want to go back to.  Sitting here this week I feel like a different person but it’s probably that nausea thing I had.

The ‘nausea thing’ as it’s been titled really did knock me for six.  I had probably ten days of it in all.  Last night was the first night I ate what could be considered a normal plate of food.  It took ages though and my taste buds still haven’t come back but at least I’m eating.  I lost four pounds in a week – not that anyone has noticed – and they’re still off.  I checked this morning.

My weight is a constant battle.  Being sedentary and unable to do much by way of exercise is a huge factor to this.  My joints and energy levels are just not like other people’s.  I can be exhausted just walking up the stairs and so the idea of doing a couch to 10km thing for example is unthinkable.  This nausea thing, however horrific it was, has helped me realise that if I’m ever going to be a skinny minny then food is the only way to that.

Not eating ‘normally’ these past ten days has been truly horrible.  I can promise you that.  Watching hubby inhale an entire pizza whilst I’m struggling with one scrambled egg was a particular low point.  Making a sandwich last two meals and not wanting it at either of them was also pretty pants.  The questioning from himself ‘what have you eaten today?’ felt invasive and accusatory.  I wasn’t deliberately not eating, that is not me in any shape or form.

I was intrigued as to whether four pounds made any difference if the doctors knew.  Turns out my BMI is still in the obese range but it’s getting closer to overweight.  Two more pounds off and I’d just be overweight, not obese.  Pah.  Life is too short.  I’d find it easier to grow another three inches than lose another two pounds whilst actually eating food.

That four pounds was in a whole week, Sunday to Sunday.  I’ve not lost anything this week (Sunday – Thursday) but I’m going to convince myself that whilst I’m still not eating properly, my body is in shock and won’t lose more weight this week.  Not that eating any form of food is going to make me a heifer again.

And I’ve come to another big decision too and it’s a proper selfish one.  I’m struggling with the guilt of doing something for me but I’m hoping I’ll get over it.

About eighteen months ago I tried to get treatment for some scar issues I’ve got.  But the treatment I had years ago for other scars is not offered anymore on the nhs, there’s no money.  Course I had to wait sixteen weeks for an appointment to be told to get lost but hey ho.  The nhs doctor told me I’d have to go private and at the time I was super upset.  But since then my scars have bothered me more and more and so when I’ve been working here I’ve tried to put some money aside.  So my selfish decision is that I’m going to make an appointment to see a doctor about them next month, going to try and get them sorted.  It’s going to be super expensive and I’m aware I might not be able to afford it right now but I’m hopeful that I’ll make it work somehow without resorting to the fantastic plastic.  If I haven’t got enough saved, it won’t happen, simple as.

Curious how not eating leads to a fresher outlook on things – Don’t fret though, I’ll be back to my usual grumpy, mood-swinging, pain filled self soon enough.  Normal service will be resumed.

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.

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.

October 18, 2016

Think before you blog

Posted in Health stuff tagged , , , at 9:36 am by viewfromthisdesk

Last week I wrote on Tuesday about how fabulous I was feeling, how things were fairly even-keel even though I’d done way to much on multiple levels.

It was all really quite glittery rainbows and dancing unicorns wasn’t it?

I ended up horizontal on Thursday and Friday.  Only managed to get out of bed and dressed on Saturday.  By dressed I mean more than my duvet.

This week I’m incredibly sore in most of my usual important joints.  Some of my finger joints have swollen up and I thought it was a genius idea to grab a sheet tray off the worktop the other evening without realizing that it had just come out of the oven.  I’m unable to manage fixings or fiddly stuff so all my clothes have to be pull on sorts, writing is really painful which isn’t ideal when there are dates in October than need cards and notes.

Physically, I’m struggling.

But I shall emerge from my cat guarded duvet palace and shove on something so I don’t get arrested and paste a smile on my face.  Just don’t look too closely for the cracks in this veneer will shine through.

 

June 1, 2015

Tapping out

Posted in Health stuff, June tagged , , , at 4:50 pm by viewfromthisdesk

I had a few issues yesterday with back spasms.

When I say a few issues, I mean I couldn’t move without shooting pain going from my pelvis to my leg.  I couldn’t stand up if I’d been sitting for longer than ten minutes, equally it took me forever to actually get into a sitting position if I’d been standing.  I couldn’t bend or lean.

I tried wheat mats.  I tried TENS.  I tried a session in the hot tub to try and relax and warm the area.  I tried Ibuprofen gel.  Nothing eased it.  So I dived into the box of secret pharmaceuticals and masked it all whilst I went out on exit count.

But I knew it needed fixing, so I went and saw the lovely Russell this afternoon.  He’s stretched and pummelled and eased up various joint things.  I’m not saying it’s fixed because it blinking hurts lots right now but I know it’s going to be better in a few hours.  He has instructed me to spend plenty of time in the hot tub tonight.  And I can’t ignore his instructions, can I ? 😉

The mad thing is though, I haven’t seen the lovely Russell for three years.

THREE WHOLE YEARS.

June 12th 2012 was the last time I saw him for re-arranging.  He used to be an every-week sort of treatment.  We joked that my appointments would cover the building rent.  He didn’t even know I was licensed!  Madness.

Three years.  I’m in shock.  But I think it’s a good shock.  I think it shows how far I’ve been able to come in managing my pain myself, how I’ve been able to use other things to stop joint failure in the early stages.  I’ve been able to climb ladders and walk through woods and stand in the cold.  That wouldn’t have been possible before.  There were days I could hardly walk to his treatment room!

Anyways, hydrotherapy is calling.

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.

April 22, 2015

Spring has sprung

Posted in April, Health stuff tagged , at 2:43 pm by viewfromthisdesk

It’s hard to be sad when the sun is shining and the daffodils are fading out as the tulips come in.

It’s hard to be sad when the days are longer and the temperature is slowly rising.

It’s hard to be sad when the bats are out and a hedgehog shuffles through the garden.

 

But I’m still me.  Trapped in this useless body.  Screaming for my old life.

 

I was told at the weekend that I had no clue about real life, how the real world works.  It hurt, but having thought about it over and over and over and cried and shouted and cried some more; maybe it’s true.  I might not understand the real world but that’s because I have no place it in.  I can’t work a proper job like real people do.  I can’t maintain hobbies like real people do.  I can’t go out on a whim or make plans with friends like real people do.  I can’t have energetic horizontal gymnastics like real people do.  I don’t have a life worth living in the real world.

 

So spring may be here.  And the real world is a beautiful place.  But my world is not.

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.

October 10, 2014

Notes on now

Posted in Health stuff tagged , , , at 2:07 pm by viewfromthisdesk

I’ve not been managing too well and my brave face on things has been shockingly rubbish too.  I’m sleeping lots during the day, I’m spaced out at work, I’ve got extreme mood swings and absolutely no attention span.  I recently saw my doctor and he has agreed that I should stick to an increased dose of my pain meds which now classifies them as anti-depressants.  Am I ashamed to admit this to the world?  I was, at first but now I know that if I don’t tell then I don’t get hugs and help.  I need another household angel, I need the domestic pressure taking off.  I can’t reduce my working hours any more, I shouldn’t be sleeping so much.  I should be better than this.

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