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.

August 16, 2017

Weeks thirty-one and thirty-two

Posted in August, November tagged , at 12:14 pm by viewfromthisdesk

It’s been an interesting and difficult fortnight. However, I can’t say I wasn’t expecting it. I write this blog trying to pretend no one reads it, or at least if they do, I don’t know them. You are all unknown and mysterious.

That is a daft frame of mind I appreciate, but if I’m going to write then that’s the mindset I start from. Because if I think about you as an individual, as a friend or family member, I’m not going to be honest because I don’t want you to worry or be upset. I protect you from the truth and no one wins. You don’t know I’m struggling and I bottle it all up.

I totally know that my post ‘when the darkness wins’ has upset some of you. I also know that my post ‘One Million Lovely Letters’ was much more cheery and read by half the people.

So unless you sign up to get these witterings by email, you might miss the happy ones. Relying on faceache to show you everything is like relying on Father Christmas to bring you that new car *and* squeeze it down the chimney without scratching it. So click on the grey box that says follow and you get to laugh with me much more than crying.

I was humbled by what followed both those blog postings. I received my very own Lovely Letter, not from Jodi but from someone else who had watched the programme and thought of me and then read my blog post about the show. That random Lovely Letter made my week. It’s amazing what a stamp and ten minutes of your time can do to cheer someone up. So I encourage you all to do it because I can vouch for the magic it makes. I also wrote three of my own Lovely Letters. I didn’t manage one a day for a week but three is better than none. And I want to do it again soon.  I may have cheated insomuchas one of them was typed and one of them was a post-it note sized card but I still did it.

I also had surprise parcels and gifts. I had a gorgeous bunch of yellow flowers from a dear friend and they also brought doughnuts which were lush. I had a packet of kit kats which you all know I have a weakness for, an engraved spoon which has more meaning than just the words etched into it and a manatee tea strainer which is so epic that I cannot put into words.  And all these things before my birthday!

So maybe I need to be more aware that people do care about me and my mental health. Maybe I’m not as alone as I thought I was. People may be geographically distant but not emotionally.  And if I upset you then please tell me, or if you have questions then ask them.  Ask me to elaborate on something or discuss further or pass on sources etc.  If you interact then I know you’ve read and are interested.  Email me, messenger me, a proper letter even!  Human interaction can be lost in this modern technology filled world.  Tell me you saw that scenario I wrote about from a different point of view.  Challenge my negative thoughts and memories.  Recommend a film to watch or a book to get on my kindle and then we can talk about it like proper grown ups.

I hide behind these sentences because I cannot meet you for a drink in town or travel to your sofa or speak to you on the phone.  I use this writing medium to explain the stuff that my speech issues prevent me from saying.  I can type at 2am a reply to a message.  So don’t read and be sad, read and reach out and tell me how things are.  Tell me it’s not like that, tell me it’s actually somehow different.  Help me look at things from a different angle, through different coloured glasses.  Remind me to stop eating everything in sight.  Tell me about your lovely letter that you wrote and the feedback you got from it.

I’m still here, just not physically.

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.

July 25, 2017

One Million Lovely Letters

Posted in July tagged , , , , , at 10:22 am by viewfromthisdesk

I had planned to write a post about suicide, which is nice and cheery but then that all changed last night.  As ever, I’m referring to something I saw on tv which got me thinking.  And crying and laughing.  If you didn’t watch it, find it on iplayer.

Last night on BBC1 at 7.30 was a program about a lass called Jodi who started writing letters to total strangers.  She has a target to write ‘One Million Lovely Letters’ and some of the people featured talked about how her letter had arrived at a really difficult time and had gotten them through.  One guy was from Canada and had fixed her letter to his computer so it was a daily reminder.  Letters, words, ink on paper are powerful things.

I used to love writing – my teenage years were full of writing to friends and boyfriends.  The angst of those years would pour out as my inky scrawl would fill pages and pages.  I’d look for colourful envelopes and nice paper.  I’d save any money I had for stamps which were much cheaper back then.  I’d feel full of love and excitement when I had an envelope for me when I got home from school.  That someone had taken the time to sit and write to me, take that time to think about me and want to connect with me, that was magical.

I still have notes from people from when I was 14, I’ve kept them and I re-read them.  My gratitude jar was amazing for the couple of years that it worked.  But it’s not been contributed to for a while.  Maybe I haven’t done anything with anyone worth writing about?  But that was amazing, tipping that out on New Years Day, seeing what people had scribbled on the back of a cinema ticket or shopping receipt.  Because it didn’t have to be an essay it could just be ‘I had a really nice time with you today’.  Something so simple makes a huge impact.

I miss it.  I miss writing terribly.  Holding a pen is absolute torture now and it’s all I can do to write happy birthday to someone.  Emails and faceache just are not the same.  They’re nice, but not the same.  I try and write proper letters to people but I have to type them now which I think is somewhat bad mannered.  It’s cheating.  But it’s all I can do and so I console myself with ‘at least I’ve written’ and try not to think about the medium within which I have written.

So, going back to the show – Jodi last night, had set up a webpage where you could request a letter.  At the time of filming, she had 8,000 waiting emails.  According to Twitter, she had over 1,500 emails during the program.  There are that many people out there, who feel that they need that random act of kindness from a stranger to tell them that it will be okay, that they will get through, that they are enough.  And I’ll be honest, I wanted to add myself to that list.  But now I know how many people have also asked, I don’t want to add to her pressure.  I don’t want to make her feel overwhelmed.  In all honesty, I don’t feel worthy.

So. if you find yourself with half an hour this week or weekend, write someone a letter.  Or a card.  Or just a post-it note.  Or rearrange the fridge magnets if you can’t be bothered to pick up a pen.  Tell someone you like their hair, their top, that they made you smile today, that they *are* enough.  Take lyrics from a song (with credits in case they want to listen to it) if you can’t think of anything!  Maybe challenge yourself to write to one different person every day for a week.  Spend fifty pence on a stamp, make them feel special.  It’s important.

Or do what Jodi did.  Write a note and hide it on the bus or train or in the communal fridge.  It doesn’t have to be huge.  Just a handful of words on a boring square of paper.  You don’t even have to add stickers or glitter or a smiley face.

Words hurt and that hurt lasts a lifetime.  But words can also make someone’s life turn turtle in a good way.  Words can remind someone that it’s worth persevering, that it’s worth struggling through because somewhere out there, someone does give a stuff.  Someone does care.

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.

June 12, 2017

Skipping Meals – fasting or foolishness?

Posted in June tagged , , , , at 2:53 pm by viewfromthisdesk

It’s super unusual for me to not be hungry.  It’s no secret that I like food, I talk about it enough and think about it near enough all the time.  Hubby and I will be in the middle of eating a meal and I’ll be asking him what he wants for the next one or if such and such would be okay.  I tried doing weekly meal planning on our weekly blackboard organiser but it just meant that it was a stressful fifteen minutes in one solid lump of me asking what he fancies for tea this week and him replying ‘I don’t know what we’ve got’ and then me being super annoyed and frustrated over his inability to open the freezers or cupboards and look or – heaven forbid – actually remember what we bought recently.  ARGH!

Food is my enemy and my comfort.  It stresses me out and makes me happy.  I just feels like a permanent bad relationship that you can’t leave because when it’s good, it’s really good and you can almost forget the horrid bits.

I started not feeling hungry when I did the rainbow eating a week ago.  And for the last week it’s been a recurring thing.  I’d not want breakfast most mornings and if I didn’t eat something then I also wouldn’t feel anything come lunchtime.  By about 4.30 I’d be ready to eat my desk though which is reassuring!  I can’t work out why eating makes me then regularly hungry but missing a meal isn’t triggering those same feelings.

Last week I read an article which said that people that didn’t eat between 7pm and 11am and then only had two meals (lunch and tea) lost more weight that people who ate tea at say 8pm and then breakfast.  They put it down to this period of fasting.  But I put it down to a skipped meal.  If you are only eating twice a day then of course you’ll lose weight, it’s a whole meal’s worth of calories not going into your system.  When I skip meals it doesn’t help me lose weight, it doesn’t change anything other than giving me food guilt over not eating.

The 5:2 diet was super popular last year and when I read about it, I just laughed.  Miss a meal, you are joking!  And yet somehow, I’m doing it inadvertently.  This morning I ate breakfast but didn’t enjoy it and wanted to give up half way though.  It was a nice breakfast, I just couldn’t be bothered with it.  And it’s now almost 3pm and I’ve not fancied lunch yet.  I probably won’t bother now, although I’ve got yoghurts in the fridge as a just in case.  I have a drawer full of emergency hula-hoops that I’ve ignored for a couple of weeks.  Food just isn’t giving me the same feeling of happiness and contentment any more and I don’t like it.

In bonus news, my mouth has stopped bleeding and going ganky.  I also made a lasagne yesterday which had many, many vegetables in.  I think I counted six and Hubby didn’t realise.  It was delicious and he’s commented that he can’t wait to have it again tonight as we had enough left for a second meal.  Maybe I need to do more food subterfuge to make it more exciting for me?

June 8, 2017

Revenge of the Rainbow

Posted in June tagged , , , , , , at 11:46 am by viewfromthisdesk

It really is as sinister as the title suggests.

Yesterday I decided to have a non-rainbow breakfast.  I wanted to see how – if at all – I was affected by non rainbow foods, either physically or mentally.  I suppose I was testing to see if my attitude to food had changed, so buy eating something that I knew wasn’t brilliantly good for me, would I feel guilty or inspired to counteract it and run a marathon or something.

So I had hot cross buns for breakfast.  They smelt delicious in the toaster; the spices, the bread goodness.  Yummy.  And then paired with a layer of budget-supermarket-own-brand-Lurpak-type-product it was just heaven on a plate, I could not wait to just shove it into my face.

However, I have learnt to take my time over food and savour the different levels of senses.  It didn’t make a noise so I was entirely enraptured by the look and the smell before the taste.  It was beautiful.

My first bite.  My very first bite.  Oh my taste buds exploded with joy.  And then a crunch and a weird metallic taste and ….. pain.

My mouth was on fire.  The sensation in my mouth was horrid.


I had taken a chunk out of the inside of my lip.  It’s just over 1cm square which for someone with a delicate sized mouth like mine, is a fairly massive lump.

I’d like to say that the rest of my hot cross bun breakfast was left on the table whilst I tended to the medical emergency, but it was not.  I can say that hot cross buns with a blood coating are not tasty.

My lip yesterday swelled on the one side, it was super painful to drink hot tea or even warm tea so it was another water day and eating wasn’t fun so I just had cauliflower cheese for tea.  This morning, it’s less oozy and less frequently bleeding so hopefully it will heal up soon.

 

Will accept tubs of ice cream as sympathy and love.

June 6, 2017

Rainbow Lessons Learned

Posted in June tagged , , , , at 1:10 pm by viewfromthisdesk

It’s difficult to know what this experience has taught me as I’ve just got random thoughts about it.

For starters, I did honestly think that I might lose weight by eating far more healthily but I didn’t.  Three days of mindful eating and I didn’t even see one pound off on the scales which surprised me.  It wasn’t the reason for doing it but it would have been nice to see a change in numbers.

Rainbow eating as a concept is to target a rainbow a day.  In order for me to to appreciate the theory of it all, I decided to try a rainbow a meal.  Otherwise I’d be doing beige plus some sides which wouldn’t exactly teach me anything.

When I went shopping that first morning, I was surprised how expensive it was to buy a trolley of fruit and veg.  But I have to remember that I’m taking the idea to an extreme.  Beige food is cheaper – a box of frozen chicken steaks that will do two meals is cheaper than a tub of blueberries for example.  I went shopping at what is considered a ‘budget’ supermarket, I can’t imagine what the cost would be if I shopped at a typical supermarket or at a farm shop.  The trolley full I bought on the Friday morning was almost the same amount as our weekly shopping budget and that’s not fun.  Aside from frozen veg that I already had in the freezer, this stuff also doesn’t last very long, and I hate shopping.  Rainbow eating over a longer period of time would result in more trips to a supermarket which is something I don’t want to entertain.

Money aside, I learnt that salad is boring without mayo.  Moving forward, a tub of coleslaw will be an investment and I’m sure it counts as something if I get a low fat low sugar version.

I was going to make a red cabbage side that even himself will eat.  It has orange juice, raisins and apple in it. That’s got to be a couple of colours for sure.  But the shop didn’t have red cabbage and I forgot it’s not the right season for that.  Purple as a veg colour is hard.

Sandwiches are boring without crisps.  I’m not sure sandwiches are really meals without crisps to be honest.

I was surprised that the first breakfast was so nice.  That mix of fruit with yogurt was delicious.  Going forward, porridge with mixed berries would cover three colours and if I found some nuts or seeds that would add texture.  I get super bored with food really quickly so I’d need to find something to keep changing the texture and presentation of food and I’m not sure I’ve got the imagination for that.

I really liked the sweet potato thing I did for tea on Saturday, it was easy to make and really tasty.  I will make it again for sure.  And not just because I’ve got another sweet potato in the veg rack.

Because I was eating so much veg and fruit, I noticed my meat consumption reduced.  It wasn’t intentional but just happened.  My besties will have opposing feelings about this.  The sweet potato dish for example is supposed to have bacon or a gammon steak chopped up into it, but I just used some left over pancetta from the salmon dish on Friday, so it wasn’t as much as the recipe suggested.  And when I was eating salads, I was happy with the raw nuts as protein.  Chicken is my favourite thing in the world and I’ve not eaten it at all over the three days.

Wearing jeans that I knew were tight made me more conscious about the amounts I was eating.  I didn’t have anything ‘treat’ over these three days – no chocolate, crisps, ice cream, biscuits or cake.   I can’t say that’s been particularly fun but it was part of the process.

As an experience, it was thought provoking and challenging and frustrating and fun all mixed up in a mad mixing bowl of food.  I had to plan ahead more and think about what I was having and allowing time to prepare and rest up.  Food was – to a point – more enjoyable but salads are my sticking point.  They’re boring and dry and I don’t want to feel like I’m eating cardboard.  Another massive issue is that I dislike cooking.  It’s a struggle for me, physically and mentally.  It hurts.  I get no pleasure from cooking.  I hate the fact I’ll wrestle with ingredients and kitchen space for an hour or more and within ten minutes of dishing up, it’s all gone.  I wish hubby would cook more but he won’t.  His idea of cooking is buying a takeaway on a Saturday night.  It’s tough.  I could really do with someone else cooking for me and then I’ll be more open to trying new stuff and I’d feel less angry about how making meals hurts so much.

What has been super lovely is the people that have found this blog and messaged me and told me that they’ve given it a go for a meal or a day.  The statistics have been bonkers.  The supportive comments have been amazing.  Maybe that’s what I need to focus on from now on?  Food rather than the health updates.

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