June 29, 2017

Episode 4 Doctor in the House

Posted in Health stuff, June tagged , , , , , at 5:41 pm by viewfromthisdesk

This has been the episode I’ve been most looking forward to as for a while I’ve known it was about exhaustion, ME, fibromyalgia and similar conditions.  I wasn’t expecting to get a massive breakthrough, but I was hoping for enlightenment.

I totally resonated with the statement ‘I just want to feel normal, I don’t want to be this tired, I just want the pain to go away’ and then the most real one ‘they give out pills and then some more pills and then different or stronger pills and then pills for the side effects’ this is SO TRUE.  Ten minute appointments with a GP or a consultant literally just gives you a new prescription.  Meds help for sure, but they’re not the answer.

The doctor talked about how fibromyalgia and ME are mystery illnesses.  This is very true.  Doctors have told me on more than one occasion that fibro and ME are diagnosis’ given out when nothing else applies.  When all other things have been ruled out.  And indeed, that was true in my case, I spent years having tests for thyroid issues, scans for MS, blood taken for Lyme and lupus and vitamin deficiencies, electrical hook-ups for nerve damage assessment.  These were done repeatedly over these years of an unknown title to what was wrong.

I had a course of B12 injections which I didn’t think changed anything but I know some people find them amazing.  I also went gluten free for six months and felt more awful after that than ever before but again, I’ve found some people who swear by GF living and the improvements this gives to their ME.

I’ve never gone diary free but I don’t consume a huge amount of dairy.  I also don’t drink alcohol anymore.  I am aware that some people drink to numb the pain.  It’s utterly understandable, I would.

I saw the frustration in the faces of the family members.  The fed-up-ness of there not being answers, of the restrictions in the lifestyle and the reliance on pills.  And to some extent, there’s an element of suspicion – it can’t be as bad as they say.

The wish to maintain a normal life in terms of work or family responsibilities is so true for anyone with one of these invisible illnesses.  We push ourselves to be normal whilst physically struggling.  We want to be a good partner/parent/friend.  We cannot physically be that good but we push and push and push.  And yes, I’ve been told so many times that it’s not real, that it’s in my head and I just need to change my mindset or snap out of it or get (pay for) some CBT therapy so I retrain my brain to ignore the pain and exhaustion sensations.

Ignoring the pain and exhaustion and not being kind to ones self is a common thing with ME and fibro.  No one believes us so why should we believe ourselves?  Not coping with life, feeling like a constant failure is very real.  Regardless of whether you’d say that to another person or not is irrelevant, you have a reduced number of friends with ME and fibro anyway.  People are sick of you cancelling or leaving early or not getting wasted with them so they fall out of your life.

Going GF didn’t help me.  I don’t eat a lot of sugar or junk food, and whilst rainbow eating was fun, I didn’t feel any different then either.  It brought other issues and challenges as well but eating more fruit and veg is always going to be a good move and I’m working towards that every day.

I was hoping I’d get some magic solutions from the program, hoping I’d get something new to try or think about.  I’m struggling this fortnight, I’m sleeping during the day more, having chronic headaches and brain fog.  Alas, there is no magic wand, the Doctor was not in my House to solve my issues but it was helpful.  I felt like I wasn’t alone, I saw myself reflected in the people on the show.  I wasn’t a liar, I wasn’t imagining it.

I’m very certain that my mental health has a huge impact on my physical health and that’s something that maybe I need to focus on more this year.  Stop worrying, stop stressing, try and reverse or remove the depressive feelings I get.  I have no clue how I’m going to manage this but I know I have you guys to help me get through each day; one day – nay, one hour – at a time.

October 18, 2016

Think before you blog

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

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

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

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

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

Physically, I’m struggling.

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

 

June 1, 2015

Tapping out

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

I had a few issues yesterday with back spasms.

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

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

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

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

THREE WHOLE YEARS.

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

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

Anyways, hydrotherapy is calling.

May 15, 2015

May 16th, one year on

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

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

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

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

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

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

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

April 22, 2015

Spring has sprung

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

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

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

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

 

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

 

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

 

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

January 8, 2015

Being honest

Posted in Health stuff, January tagged , , , , , , , , , at 1:44 pm by viewfromthisdesk

I’ve being going on for years about how I need to be more honest about how I’m feeling and how I can’t use the phrase ‘I’m fine’ to cover all my lies.

So, deep breath ….. today is a bad day.

There you go.  It’s out there.  It’s flying around like an enormous neon sign, telling the world that I’m really rather useless and pathetic and rubbish.

Last night I got home from work feeling okay, I fetched firewood, lit a fire, watched some tv and then slept for nearly two hours.  Spent the rest of the evening feeling groggy, nauseous and cold.  Went to bed and slept for twelve hours.  Failed to get up for work at the appropriate time and didn’t wake until 11.59am.

I now feel utterly rubbish.  Weak as a kitten, groggy and fuzzy and ache like I’ve been in a fight.  Really light sensitive and my hands and wrists are KILLING me.  Couldn’t put my work trousers on because after fastening my bra, I couldn’t work the zip and buttons.  So I’m in the office with soft trousers and a jumper.  Get me looking professional as heck.

If ever there was a time I wanted to be able to crawl back into a cave and hide and cry and pretend that reality isn’t happening, this is it.  Honesty is horrid.

October 10, 2014

Notes on now

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

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

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!  🙂

May 14, 2014

So much to tell you

Posted in Health stuff, May, Twilight Walk tagged , , , , , at 11:51 am by viewfromthisdesk

Last week I saw the M.E. Psychologist doctor bird.  She was far too young for my liking, I’m not sure that she wasn’t actually on work experience.  She said that due to funding issues, there’s not really anything more they can do for me other than discharge me from the service and offer me a drop-in clinic thing.  Ah well.  I got lots from it and hopefully my space can be given to some other person struggling with a new diagnosis.

Yesterday I finally got to see the Pain Management Team.  The youngster had told me to hold my ground with them and demand help.  I said if she read about a sit-in-protest situation in the hospital, she’d know it was me.  She said my excessive use of humour is preventing me from accepting the chronic-ness of my diagnosis.  Silly wench.  Anyway.  Back to the pain team.  Lovely chronic pain nurse and another youngster quack, but he had a beard so clearly trying to look older.  I did indeed, refuse to budge until I had a shopping trolley of things.  My pharmacuticals are being changed to give me more of a constant pain relief, I’m being referred for hydro-therapy, I have to go to some happy clappy group session to stay in the system but the thing I really wanted; I’m on the list for a TENS machine.  Yey.  I only get it for a month to try and then if I like it I can buy one.  I’m chalking that up as a result.

Two days to go until this crazy Twilight Walk.  I had hoped to hit £600 when the donations were flying in, but we’ve paused at £551 for some weeks.  Never mind.  So, 5km.  Have seen the route, that’s fine, have planned lots of pink things to wear, not so fine but it’s a good cause.  And it’ll be dark I hope.  Hahaha

Then next Friday I’m leading a walk through the park and along the river in town for education and public interaction with the bats.  9pm meet at the park-side of the Bell Tower if you’re interested?  Should be fun and I won’t be wearing pink!

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