There was a time…. #fibromyalgia

There was a time when I could give my all online, as a very early adopter of technology and the internet I lived and breathed it. Now all I do is work all the hours God sends for nothing but exhaustion, frustration, isolation, and lack of appreciation. Why do we as a country have these stupid long hours, crap pay, rubbish pensions, and no such thing as retirement anymore.

I dunno, I give up. Most of these new health initiatives are just talk, show off and no action. Paper documents come out, research papers, fancy expensive meetings and wasted money.

We have all this technology and we’re no further forward. 

Live to work and not much else #fibromyalgia

It’s the weekend, time for a bit of catching up online with my own site/community/FB/Twitter than I run and have done for many many years now.  I’m also working on a plan over next year or so to try and set up my own consultancy business.  It means that I can go self-employed and create a mental and physical wellbeing balance that I know I will never be able to replicate in mainstream employment.

I actually don’t believe workplaces will ever address the barriers and stigma that face physical and mental wellbeing in my life time.  We are getting there, but the power of many is often offset by the shear ignorance of a few who on balance can really mess things up.

I work in mental health and I’d say that although my workplace has been very accommodating, my previous employers weren’t and likewise many people who I have spoken to who work in mental health are dealt with dreadfully.  The facade put on by businesses/orgs/companies hides a very painful and shocking underground agenda of bullying, discrimination and self-importance.  As individuals we are fighting for every position we can to heat, feed, clothe and put a roof over our heads.  Who are we kidding when jobs are on the line that everything will be dealt with according to laws, policies and rules. 

I’m also fed up with people.  I don’t fit in with most people; I don’t have the same opinions, values and principles.  Everywhere around me, people talk about issues and topics and 70% of the time I don’t see things the same way. If I could live on an Island with my husband, I would!  But then I am overly sensitive to external stimulation and most things bug me. 

I’ve waffled today, but actually what I was really going to write about was Income Protection.  After nearly a year of looking I decided to make the move and call a broker to look in to Income Protection for me.  I know I needed more specialised advise as I have a pre-existing condition.  I suspect it may be quite difficult to find something and my premiums will be more per month, but that’s something I am prepared to pay for.  I’ve included redundancy in it too as I went through this process just last year and it was so stressful I’d want to make sure that should I be in that position again, I’d at least have something to live off while looking for other work.

I await the result of my MRI scan, hopefully no intervention is needed, but I try every day to do my exercises, to keep as supple as possible, to reduce the cramps, burning, aching and swelling.  I never thought I’d be in this position and now that I am I’ve just got to get on with it.

Lastly, for you mttop72, I’m looking for a lovely Scottish Scenery photo that’ll I’ll put up asap.


When things go wrong…. #fibromyalgia

Not hugely wrong, but just not what you need when you come back from holiday.  My memory failed me when I assumed I would remember, but I thought it would still work out OK, it didn’t!  I was meant to collect one of my prescriptions on Saturday, and when I forgot I checked to see how much I had left. Enough till Monday so didn’t worry too much. Popped down to my local chemist before work but found it was closed. Thought it was a bit odd, so went to ask in the Post Office. Apparently it was a local holiday and because I’d been away I didn’t know.

At that point I really had no other options, so used my PRN medication to tide me through the day. By the time evening came, I was a little more uncomfortable than usual, but worse was yet to come. I went to bed at my usual time of 10pm, and that was it. Barely any sleep came; I tossed and turned, too hot then too cold. Exhausted by 7am, feeling quite unwell, shivery, tired, sore eyes I got up and had a shower. I went back down to the chemist I got my prescription and immediately took  my first dose. I took my second as usual at lunch time and by about 2pm started to feel a lot better. I was completely knackered, but at least I didn’t feel so unwell. Unfortunately i had to go and have my MRI at 6.30pm, but once that was over I went home and had a much better sleep.

I always struggle with sleep, but at least I get some.  Having none is so much worse. 

I’ve had a very busy week back at work as we are moving offices and the first week back after a holiday is always tiring. As I work from home on a Friday today is really my last day which is quite nice.

We’ve had so many changes and uncertainties in the 3 years that I’ve been there.  I’m hoping this will be a new start with more stability and accountability as people too long in the tooth move on and new more experienced people come in. I never want to experience that again, so here’s hoping.

Night xxx

I never tire coming to the Highlands twice a year. Neither of us own passports and haven’t done for over 20 years.  In fact my husband has never had a passport so isn’t even bothered.  We’ve never once wished we weren’t here. The more recent problems of caravan holidays have been overcome by taking the right comfort padding! Unfortunately my husband has had to give up a lot, but I too miss what we used to do.

We have a lovely tent with all the additional extras.

We have a bike each that we used to take for    mountain biking, sometimes covering as much as 30 miles in one day.  Just before I became unable to take these with us on holiday we had bought a new bike carrier with number plate and had a tow bar fitted to the car.

We’ve done many long mountain walks in breathtaking Scottish scenery.

Long drives have become shorter as a tire more easily. These photos instill many happy memories and there so many people who develop fibromyalgia early in their lives who won’t have had these chances or opportunities.

The day we arrived it was a beautiful evening; very classic of the Highlands. Most of the stuff we bring is pre-packed, and as we always come to the same place we unpack like the same jigsaw done every day. Everything has its place.

The bed is always my worst nightmare and true to form I woke up on Sunday having pulled a muscle in my shoulder and neck. These areas are bad enough without making them worse so I was increasingly restricted for several days. I find driving quite difficult but as I have a good discipline of using all mirrors I’m generally OK.  There are exceptions of course and this was one of them!

Never mind, it did pass. Poor sleep remained throughout the rest of the holiday, cramp in the legs, burning in my heals, restless legs and being unable to find a position that brought any decent sleep. The bonus is though that it didn’t matter because the days were our own.

Going back to work is always hard, but as there is no difference in wellbeing on any 365 day there is nothing to gain by being off.

So, what does this holiday and all the other holidays past and present do? It gives me quality time with my husband, laughs with our budgie, the most amazing wildlife, catching up with lots of books and films and most of all peace and quiet.

I’d swap this life for anything, it’s so good for you, the air is like nothing on earth and makes coping with fibromyalgia easier.

Maybe one day…..