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.

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March 28, 2017

Laidlaws Rule

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

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

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

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

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

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

However.

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

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

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

‘The Inside Track’ by Jake Humphrey

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

‘Rockers and Rollers’ by Brian Johnson

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

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

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

‘My Autobiography’ by Guy Martin

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

 

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

 

November 1, 2016

Grieving for the past

Posted in November tagged , , at 10:45 am by viewfromthisdesk

I just stumbled upon an excellent blog post entitled ‘Grieving for me because of M.E.’ and it was blinking brilliant.  Totally resonated with some of the thoughts and feelings I’ve been fighting with these past few years.  Hubby and I often talk in terms of ‘before’ which is kinda like modern societies BC / AD time splits.  ‘Before the diagnosis’ would be a good title but I was struggling for a few years before that actually occurred. ‘Before’ is all and more of these.

Before I was ill.
Before I got tired.
Before things hurt.
Before I couldn’t walk unaided.
Before I had to give up alcohol.
Before everything had to be considered in minute details as to how/when/where.
Before people thought I was unreliable.
Before working full time wasn’t possible.
Before being a burden on those around me.

I know I try and laugh and joke and use humour as a distraction tool.  If I’m making you laugh with me, then you won’t notice the pills I’m swallowing or the furniture I’m clinging onto to walk around.  You won’t notice the pain dulling my eyes or the strappings and supports that are holding me together.  If I make my crutches colourful and exciting they’re an accessory not a burden.

And some of you gorgeous, lovely people have constantly told me to be honest.  To trust that you won’t run away and you’ll stick with me no matter how bad.  But I don’t want that.  I want before still.  I want to be the person I used to be.  I am grieving for before.

October 11, 2016

Long time coming

Posted in November tagged , , , , , at 12:01 pm by viewfromthisdesk

It’s bizarre how fast this year is progressing.  Yesterday was apparently eleven weeks until yuletide which is scary enough to remind me I haven’t even given it a thought yet.  I was also reminded that two years ago I was in a pretty bad place and my meds had been increased significantly and I wasn’t sure how I felt about that.

With a condition like ME, nothing is ever constant.  There never seems to be a pattern or a routine that gives you the heads up on anything.  I am aware of situations that don’t help my physical or mental well being but these are not set in stone.  For example, last week I was temping and this usually makes me really, really ill.  The long days, stressful working conditions, bright lights, driving at busy times, it all combines to usually leave me in bed for the weekend at least.  Last week was particularly mental.  It was so busy and there was no one else to take the pressure off (usually I can shout that I’m locking myself in the loo to get away from the phones for five minutes and someone else will cover them) and I ended up working ten hours on the one day.  It wasn’t fun.  And then sensibly, I decided to throw my flu jab in the mix of a crazy week.

I have a jumble of feelings about the flu jab.  I have it because it’s offered to me and I don’t usually get anything free so I’m inclined to take it whilst it’s there.  I have it because my immune system is shot to pieces and so if I got any sort of bug it would flatten me for a couple of weeks.  I don’t like it though because it usually ruins me for a good couple of days.  Last year I had to miss a gig we had planned to go to because I was so nauseous and wobbly.  This year I was expecting to feel rubbish but figured that it would be combined with post-temping rubbish-ness and I’d just get it all over with in one hit.  This year I’ve (so far) felt okay.  Aside from the usual lumpy sore arm, it’s been okay.  I like this current mix of poison that they’ve given me.

I seem to be managing in the short term at the moment, I do feel that I’m taking a micro-management approach right now.  Rather than trying to plan in scales of weeks or months I am literally going from day to day, half day to half day.  It seems to be working for the time being.  It does mean that there are extra clothes/strappings/hot water bottles/tens machines scattered around the house but it’s how I’m coping for the moment.  I have a huge amount going on in my life for the time of year, usually I’m enjoying the leaves changing and the time to sit with Pirate Cat but that’s not possible right now.  And maybe, because I’m so busy trying to do so much is why the micro management is working because I’m trying to be well, or at least vertical, for so many things that I need to just get through one thing after another.  I’m sure it will all come crashing down in a pile of tears and ibuprofen gel and whatnot but for the time being, I’m surviving.

July 5, 2016

Learning the art of balance

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

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

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

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

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

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

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

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

April 4, 2016

No April Fool here

Posted in April tagged , , at 2:17 pm by viewfromthisdesk

As ever, my monthly goals fell by the wayside.  Or maybe not so much by the wayside as off a cliff in slow motion, road-runner style.

I’ve finally managed to weed one of my rose beds, but that happened yesterday so hardly a March achievement.  I’ve still got my big rose bed to sort out but the enthusiasm for this is absent.  I’m not sure what to do in all honesty.  My hands are only going to get worse, although that’s hard to imagine considering how useless they are anyway and my ability to grip is not going to improve.  I don’t want to lose my roses, three of the four were gifts for my 21st but if I can’t look after them it’s not going to end well, is it?

My shoes were sorted.  Kinda.  Three pairs have been thrown away.  Ten pairs are in a pile for taking to the charity shop and the remaining ones are in a storage crate in the middle of the living room.  My excuse is I need a bigger plastic store box for them to go in but I’m not allowed to go to B&Q unaccompanied* so I’m a bit scuppered.  The plan is to have this crate in my overflow wardrobe and it’ll just have my lovely ‘for special occasions only’ shoes in them.  You know, the pairs that are bought to just go with one particular outfit and that one outfit is worn once every three years if you’re lucky.

The issue that has been generated from sorting my shoes though is that whilst I’ve managed to remove thirteen pairs of shoes from my collection in one form or another, I have established that I need to replace my wellies very soon and also my trusty walking boots (that I wear on bat sites, not for walking!) as I’ve had them forever and I can’t imagine they won’t die on me in the middle of this season.  But why is it that the two pairs of shoes I’ve found I need to replace are the most expensive ones?!! So annoying.

Needless to say, wellies are now on my wish list and I’m hoping I can make do with the split pair I’ve got until the summer when hopefully the birthday fairies will take pity on me.

April targets aren’t going to be set.  I’m not going to bother and then I might have a positive twist on things in a few weeks when I can go ‘actually, I achieved this and this’ one of which will hopefully be my modern art installation of shoes has been relocated!

 

 

*I’d like to quickly point out that I’ve not been banned from B&Q or that the unaccompanied thing has been set by the company, it’s actually come from hubby as my visits to the shop of dreams (as it’s known, I have a particularly tragic life) often lead to decorating plans and ideas or conversations that begin ‘I’ve seen this, what do you think ….?’  Which he doesn’t want to be encouraged because if I suddenly wanted to decorate something or somewhere, he’d have to give up time at the railway and we can’t have that.  So even though I only want to go for two plastic boxes, I have to wait for a chaperone.

Two boxes? I hear you question.  Well, yes.  One for shoes and one for my new genius idea.

A hedgehog feeding station.  Of course!

July 2, 2015

self pity warning

Posted in July tagged , , at 2:39 pm by viewfromthisdesk

I’ve just made a card for someone.  It took me nearly an hour which is stupid for what is actually is, but I still stuck with it.  And it looks reasonably straight and I’m sure the spelling is correct but it HURT.  My fingers, every bone and joint and stretchy thing are screaming at me.  I hate this.  And I’m torn, because I loved designing and making this one.  It’s the first card in about three years.  I feel proud about it and I hope the recipient loves it (not even going down the road of what if they hate it?!!) but is this physical pain worth the emotional smugness?

 

I don’t want to sell/throw/donate all my crafting stuff but if I can’t make like I used to, then shouldn’t I just forget that previous life?

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.

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 ………… 😉

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