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?

 

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!

March 4, 2016

March Madness

Posted in March tagged , , , at 1:24 pm by viewfromthisdesk

In January I wrote about setting myself little targets each month so that things didn’t seem utterly overwhelming.  I set myself three targets to achieve by the end of February, these were to write my thank you letters from Christmas, to weed two rose beds and to eat somewhere new.

Well, I wrote my letters so that’s a good start.  It was tough going and I did end up typing them but I decided that typing was better than not writing at all.  It did mean I had a huge expanse of empty white space to fill though which was really daunting.  Thank goodness that as an adult I don’t get many presents anymore!

I haven’t weeded my rose beds.  They look awful.  I am ashamed.

Eating somewhere new was managed, just not quite how I’d intended.  There is a place in town that hubby and I have wanted to go to for ages, which we were going to eat at on Monday night for our engagement anniversary that didn’t happen.  Aside from that, I went out for lunch with a couple of my bat girlies to this very place so I’m counting that as a win.  Any meal time will do quite frankly.  We still want to go to this place, we’ll probably aim to go for April which is when we got together.

So my March targets have to be:

  1. Get better! I need to shift this lurgy that has taken residence in my chest.
  2. Weed the rose beds and prune the clematis climbers. I’ve had an email to say it needs to happen now to ensure a good display of flowers.  Maybe sub consciously,  I keep hoping that some secret gardening fairy will turn up for a random act of kindness, but it’s unlikely so I’ve just got to get on with it.
  3. Sort out my shoes. I’m no Imelda Marcos but I have lots of shoes that I now never can wear again. I’ve held onto them for an unknown reason, pride maybe, proof that I did once wear these gorgeous things, but my joints and social life do not allow lovely heeled shoes any longer.  If anyone reading this is a size UK 5 feel free to come and help me and have first dibs!
  4. Something new. I’m not sure what I mean by this exactly but in a vague way it’s along the lines of wanting to push my life boundaries a bit. I’m not going to suddenly book myself in for a skydive or start collecting imperial sized nuts and bolts, more something along the lines of visiting somewhere or trying something (food, music, theatre-esque) or experiencing something unknown and previously undiscovered.  My conditions limit so much and I’ve allowed myself to become an utter social hermit.  Too scared to try anything really.  I’m not sure how this will pan out but I’ve got to have the idea lodged in my brain.

shoe mountain

(This isn’t my shoe mountain, it’s an image I’ve stolen from someone else on the interweb.  Although I do like those red ones in the middle.  Would never be able to wear them but they’re very lovely!)

 

I’d be grateful for any help anyone can offer, be it physically or motivationally.

May 15, 2015

May 16th, one year on

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

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

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

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

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

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

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

January 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.

August 14, 2014

Another day closer

Posted in August, Health stuff tagged , , , , at 10:51 am by viewfromthisdesk

I’m a bit of a kid when it comes to Christmas and birthdays.  Not just mine but other peoples too.  I love finding stuff for people and watching them open the gifts, hoping they like it as much as I thought they would.  No pressure there then!  I get as much pleasure from that as opening my own gifts.  But I’m deeply impatient and hubby and my sister have learnt to not leave pressies in my vicinity without supervision!  I’m super excited about tomorrow, it’s not necessarily a milestone age but it’s another birthday that I’ve made in one piece, it’s another year fighting against this wretched condition.

Monday I had an appointment with the pain clinic.  I had to return my NHS TENS machine, but I’m super grateful to my Aunt who sent me a ‘spare’ they had at theirs.  I’m plugged into it as I type and am anxiously waiting for an Amazon box with new pads and rechargeable batteries in it!  She asked me how I was getting on with hydro and I had to tell her the drama that was the closure.  Embarrassingly, because I said they didn’t call me last week, she rang them up whilst I was there and had a bit of a strop on my behalf.  Cringe.

So yesterday, I made my way to Worcester.  Got there a bit early due to easy traffic so had another lovely hot wax treatment for my hands and wrists.  Then into the pool I went.  I don’t do swimming, I don’t do water really.  This is not an afternoon trip out that I am looking forward to.  But the physio lasses were really nice and kept an eye on me.  We start with stretches then a circuit of ten activities, then stretches and breathing and then they leave us to float in the dark to calm our bodies and minds.  That was the bit I hated the most.  I don’t like not being able to touch the bottom, so my fingernails have been left in the side of the pool.

I left wondering what all the fuss was about, how it was supposed to help me as I didn’t feel energised or tired or anything special.  But I got home and drank three pints of water and then fell asleep for two hours.  Oops.  Next week I’m going to take my aqua weights to try and build up my leg strength.

Other than that, bring on tomorrow!  Hurry up Mister Postman, both at home and at work.  I want to know if anyone loves me!  🙂

September 27, 2013

I am a lazy blogger

Posted in Health stuff tagged , , , at 9:34 am by viewfromthisdesk

Good Morning lovely people.

I read a really lovely blog this morning about how someone felt that they should call their blog an unblog because they hadn’t written for 20 days.  It was a really enlightening read and reminded me of why I started this blog; to vent, to celebrate, to share, to ask for help.  I’ve been rubbish at that and on reflection, it’s a negative step on my part.

My OT’s and support system from the NHS have constantly reminded me that I *need* to ask for help, that I need to share what is going on.  That not asking and not sharing will only make me more ill.  And I laughed at that.  In my head, of course.  But new developments in my specialist appointments have made me wonder whether actually, I’m really not helping myself one tiny jot.

I don’t want to share my worries with you all because I want you to remember me pre-M.E.  – Before I dropped stuff, fell asleep at 8pm, lost my balance and my speech, before I couldn’t bear to be touched, before I needed helping up.   It’s selfish and stupid I know, because let’s be honest, if you’ve stuck with me thus far then you really don’t give a monkey’s about all that.  You’ve stuck with me because you care and all that *stuff* is really not important in the grand scheme of things.

So.  This week I have shared my worries with two fabulous ladies (small steps!) and they’ve both come up totally trumps.  They’ve taken my stress, squished it into dust and blown it into the wind.

Yey x

March 23, 2013

Grains of Sand

Posted in Health stuff, March tagged , , , , at 11:47 am by viewfromthisdesk

I love listening to my ipod and I always have it on shuffle. It’s a bit ecclectic but that makes it fun, such a range of genres and artists. I’m struggling at the moment, struggling to stay positive.  The other day in a particularly stupid moment, a song by Carrie Underwood came on and made everything fall into place:

 

It’s so easy to get lost inside
A problem that seems so big at the time
It’s like a river that’s so wide it swallows you whole
While you’re sitting around thinking about what you can’t change

And worrying about all the wrong things
Time’s flying by, moving so fast
You better make it count cause you can’t get it back
Sometimes that mountain you’ve been climbing
Is just a grain of sand

 

I just have to keep thinking about that last bit.  Grains of sand.

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