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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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!

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.

January 20, 2015

It’s all about the mugs.

Posted in January tagged , , , at 12:20 pm by viewfromthisdesk

My last entry to this online diary stirred up quite some interest.  Not in me of course, but in the mugs that I’d been talking about with such praise.  I feel I need to share the love, so you can all understand why I’ve been wittering on.

The first mystery parcel contained ‘Goddess’ and ‘Overworked/Underpaid’.  An additional mystery parcel last night contained ‘The Boss’  I have the bestest friends, I really do.

I’m going to save the box that one came in to put the contents of my 2015 gratitude jar into.  That way, the box is an instant reminder of a good thing as well as the notes within.

IMAG0318

 

The others I desire can be found on my Amazon wishlist:

http://www.amazon.co.uk/registry/wishlist/9FG8SFUUW5QG

Or the actual website for the whole range by this artist can be found at:

http://www.keithbrymerjones.com/

 

I’m still wobbly but down to one crutch though which is progress.  Being smothered in ibruprofen gel each night isn’t quite my version of romance, but one can’t be picky at my age.  Managing as well as can be expected which is good enough for me today.

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.

September 5, 2014

Waxing pics

Posted in August, Health stuff tagged , , , at 1:42 pm by viewfromthisdesk

Don’t worry, this isn’t me at the beauticians!  You can stop pouring bleach into one’s retinas immediately!

I said I wanted to try and explain what happens with the hot wax treatments I had when I went to hydro and I took these pics the other week.  I’m not sure how they’ll load but hopefully, they’ll be in order and I can explain each step.  I guess it works for me because it warms the individual joints in all the little bones in my hands and wrists in a way that gloves and wheat pads just cannot.  Now that hydro is over, I need to decide whether to invest in one of these paraffin baths or whether I try and cope without the treatment.

IMAG0176

 

So this is is the wax bath which had just been topped up 🙂  It looks like snowballs to me!  These are paraffin wax bombes which melt into the bath.  You can get fragrant ones apparently, but the NHS can’t use anything other than plain.

IMAG0177

So, push one’s sleeves up, spread your fingers and slowly insert into the bath.  Then lift out.  Allow excess to drip off briefly then plunge back in.  Repeat five or six times.

IMAG0182

Your hands gain this strange coating which gets in between and all over which is why you have to enter with your fingers splayed.   You build up the layers of wax and then insert into thick blue bags.

IMAG0183

The blue bags keep the warmth of the wax contained.  Your blue-bagged-hands are then wrapped in a towel.  When I first started, it was one towel per arm but then it was reduced to one towel for both arms.  Not as cosy but I guess the NHS was sick of washing towels that hadn’t been in contact with my skin but still had to be washed because they’d been ‘used’.

 

I really loved the treatment, my hands and wrists felt brilliant afterwards but I can’t drive all the way to Worcester and pay extortionate parking fees on the off-chance the wax bath will be free and a physiotherapist can wrap me up.  But can I justify the cost of a paraffin bath, the bombes, the electricity and the space in an already cluttered house?

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!  🙂

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