Why I’ve been AWOL

So I’ve not written a post for over a month now and that’s absolutely what I wasn’t going to do when I started this blog, but work has kinda taken over my life …..

I went to Paris, and while I was on the Eurostar, under the Channel, I found out that Ms May had called a snap general election. ¬†Ok you might think, until I tell you that I work for a local government Electoral Services section. So it all went mad at work as I saw the sights of beautiful Paris ūüôā

Since then, work has pretty much taken over my life, doing super long days, feeling a bit stressed, all the while surviving on the usual crap amounts of sleep. ¬†My poor family don’t really know who I am any more, as is the same with most people who work in this field.

But…. Here’s my problem. ¬†I LOVE MY JOB! ¬†Honestly, it’s the best job I could possibly wish to have, I love everything about it. ¬†I love it so much that I have been known to stupidly push myself when I shouldn’t, and then pay for it later…… ¬†The joys of fibro.

The world of electoral administration is one that isn’t really understood. ¬†When I tell people what I do, they often¬†reply with ‘oh so you only work for one day a year then?’

Last year, I, alongside most other electoral administrators across the country, barely saw my family, didn’t know whether I was on my head or my feet and had no life from February onwards – for the elections in May which lead straight into the Referendum in June. ¬†For most of the country, 2017 is proving the same, except we didn’t know this one was coming. ¬†For all of us, we’re having to cram 6 months worth of planning and work into 7 weeks pretty much. ¬†But somehow, as always, we’ll do it. ¬†We’ll be a bit broken afterwards I’m sure, but we all say how it’s worth it. ¬†Electoral administrators are like machines in many ways – and I really do think you have to love what you do otherwise you’ll resent it.

Doing this job while having fibro isn’t easy – but I have a fantastic network of fellow administrators who also have it, and I get wonderful support from them. ¬†At the moment, I’m just really hoping that I don’t have a flare in the next 4 weeks. ¬†I shall live in hope !! ¬†And I’ll try and blog more ūüôā

Loves of my life #3

It’s taken a while to write this post for a couple of reasons. ¬†Firstly because I didn’t quite know how to introduce why this was one of the loves of my life and secondly because I didn’t want to blow the trumpet as it were.

But cooking. ¬†Cooking relaxes me. ¬†Especially cooking Italian or French food. ¬†Does life get much better than cooking a 3 hour ragu to go in a lasagne? ¬†I cooked once with Gino D’Acampo in Fenwick in Newcastle and he told me to p*** off because I cooked my own pasta and didn’t believe me! ¬†Or does life get much better than when you have the parents round on a Wednesday and that after a hard day at work you cook Rachel Khoo Croque Madame Muffins which the parents claim is one of their most favourite meals?

My ex cooked. ¬†He loved it. More for the showmanship and ‘oh look what he can do’ aspect rather than because he really loved it. ¬†And then I moved back to the parents and started.

I have this inbuilt desire to please people. ¬†Not for my own glory but just to please people. ¬†And somewhere along the lines I guessed that feeding people was a good idea. ¬†From the humble pasta dishes I cooked for the parents, to the homemade pasta and ragu I’ve cooked for 10 (with pasta hanging from ever conceivable surface, coat hanger and doorknob in my apartment), cooking has grounded me.

It centres me, it makes me think that if all else fails there are ingredients. ¬†To hell with the world, I’ll cook prawns in butter, olive oil, rocket, garlic and chilli, serve it with crusty bread and feed…. Well, me.

I would say I have lots of inspirations but what I really mean is that I use recipes. ¬†The Chiappa sisters, Rachel Khoo, Gino, Nigella, Jamie. ¬†All of them have played a part, and continue to play a part in my cooking adventure. ¬†I don’t thank my ex for anything except the fact that he started my, dare I say it, ‘journey’ with food. ¬†But not for his reasons. ¬†Don’t get me wrong, I love making something, serving it and being told it’s gorgeous. ¬†But my stock phrase is always ‘it’s an amazing recipe’.

Throughout whatever has happened to me in the last 11 years, cooking has been my mainstay. ¬†Has been my little anchor. I can always tell when I’m properly ill with the fibro because I don’t want to cook. ¬† I have a little mourning session and then still make quesadillas because to me that’s not ‘proper’ cooking. ¬†Maybe I’m odd. ¬†In fact, scrap the maybe, I am!!!

Italian and then French. ¬†That’s me. ¬†Bank holidays are my ‘make fresh pasta’ time because I’ve had a little time to rest. ¬†Plus I love Italy. ¬†I went to Paris for the umpteenth time and managed to eat Italian food two out of the three nights I was there. ¬†And, funnily enough, drink Campari Spritz even though it wasn’t on the menu,,,,

I don’t know if anyone else out there defines their fibro by the amount of cooking they are able to do, but for me, right now, that’s how I am. ¬†I love it, but I’m struggling. ¬†And I hate myself for that, even though I shouldn’t. ¬†But it’s me, it’s what I do. ¬†And so not being able to do it is pretty damn hard, and pretty bloody difficult to accept. ¬†I do it for the parents twice a week, and for guests (Pioneer Woman Ultimate Pizza Burgers are planned for parents and guests on Sunday), but it’s not easy.

But hey. ¬†Tonight I didn’t order takeaway. ¬†I didn’t eat toast. I made quesadillas. ¬†I should be happy with that, shouldn’t I?

Loves of my life.. #2

Venice.

I think that’s all I need to say, isn’t it?? ¬†To be honest, there are other things that I could have written about but tonight seemed pretty perfect to write about Venice. ¬†Because as of tonight I’m going in September…

This isn’t a top 10 of things I love, but to be fair even if it was Venice would feature up there.

The first time I went to Venice (pre fibro), I hated every minute. ¬†It was on a day trip from Lake Garda and after following a woman with a yellow umbrella in a packed St Mark’s Square in the midday sun, eating McDonalds with my legs dangling off the Grand Canal, having a gondola excursion included in the price but being coralled into tipping just to be helped off the damn thing, I swore that I would never go again. ¬†That it wasn’t worth it.

Then my parents went again for their anniversary.  Gave it another shot. And suggested that perhaps I might enjoy it.  Really???

Lots of research ensued (I’m a bit of a research freak). ¬†In that research it was suggested that I might like to ask for a Campari Spritz when I was there. And see some stair things, and see St Marks early morning. ¬†And go to some place called Campo Santa Margherita.

And just like that I fell in love. ¬†We stayed in quite the posh hotel on the Grand Canal. ¬†That suggestion of a Campari Spritz became a lifelong love (as you may already know). ¬†The staircase happened to be Scala Contarini del Bovolo. ¬†Campo Santa Margherita turned into a bit of a disappointment. ¬†However, there was still something that told me that I wasn’t getting the proper Venice experience.

I itched to get back. ¬†And when the chance arose to go with the girls, to do a different Venice experience, I jumped. ¬†And found…. I found… Ca Della Corte. ¬†In Dorsoduro. ¬†The most beautiful, special B&B that there ever was. I booked for me and the girls, and then the parents threw themselves¬†on the bandwagon and went there before me and fell in love with it too. ¬†And the Campo Santa Margherita which was disappointing to me the first time turned out to be my happy place. ¬†The square bustling with students, fruit and veg sellers, restaurants and bars ¬†– and ¬†where the bar Ai Do Draghi was situated.

So. ¬†My Venice. ¬†It kinda doesn’t matter to anyone else. ¬†I know this is cliched, I know I may be romanticising the place, but you find your own Venice. ¬†You really do. ¬†It’s what I tell anyone who goes. I tell them some lovely places but say to wander. ¬†To get lost. ¬†To sit in a cafe and drink espresso and live in that moment.

I’m not exaggerating when I say that I could cry when I think about how happy it makes me to be there. ¬†How when I go to Ca Della Corte (September will be my 4th time there) I feel like I’m going home. ¬†How when I walk into the inconspicuous bar that is Ai Do Draghi in Santa Margherita that most people would walk by (I did the first time I saw it – small bar, lots of Italian students and Venetians, inconspicuous yet a wee bit intimidating) and order that Campari Spritz (or some wine off their amazing list, most of which are about ‚ā¨3 a glass), ¬†I’m home. ¬†So much so that the 70-odd year old parents, last year, somehow given the tight space, managed to do a full on dance to a bit of Queen. ¬†I have the video. It is quite frankly awesome and said dance was fully deserving of the applause they got from everyone there.

So many people say that Venice is expensive and oh my word it is. ¬†If you’re in the wrong place. I’ve been to Venice, and lived on about ‚ā¨20 a day. ¬†You would think given my penchant from Spritz that’s pretty impressive but in Venice it’s about ‚ā¨2.50 a glass. ¬†And you can get a bloody good main course for about ‚ā¨8. ¬†In the right place.

I’m not quite sure what it does to me but it makes me happy. ¬†It’s not just a holiday. ¬†I still have the pain. ¬†I still have the no sleep. ¬†But there’s this sense of adventure, this sense of beauty and discovery. ¬†This sense, as corny as it sounds, that I’m at one with it all. ¬†I’ve been on holidays post fibro diagnosis and I’ve never found anywhere that’s made me feel like Venice does.

Last year, I stepped into Piazzale Roma and had a little cry because I was so happy to be there. ¬†I walked into Ca Della Corte and Caterina the owner said to me ‘welcome home’. ¬†I just can’t describe the feeling. ¬†The last time I was there I actually got to climb said spiral staircase as it was open to visitors. ¬†Again, I shed a few tears. ¬†I go to the Ghetto, and look at the buildings that are so out of character with the rest of the city, and see how the Jews had to live, but how they persevered, how they prospered, how, in the face of adversity they were so stoic, and I stand there in awe.

I don’t know what it is. ¬†Is it that most of the time I’m in so much pain and while it doesn’t go away when I’m in Venice, the joy of being there and the beauty of it minimises it somewhat?? ¬†I find new things every time I’m there. ¬†Last time I found a new restaurant and a year later we’re still talking about it now and going to book up for a meal when we’re there. ¬†And oh, by the way, for the three of us – x6 spritz (I chose spritz instead of coffee!), 1/2 litre of wine, x3 pizza, x2 desert and x2 coffee + tip. ¬†I got change out of ¬£50. ¬†Really.

There are times that I can walk around Venice for an hour and only see Venetians. ¬†Chic older ladies buying their shopping from the fruit and veg boat that I walk by and drool at. Young guys with their bright orange and red trousers going to a meeting. ¬†Teachers with their uber cool ¬†glasses heading home. Or go to the islands and eat the most beautiful food and drink stunning wine and nap on the boat home! ¬†I’ve also pretty much done every touristy thing imaginable, been in the throng of cruise passengers following the umbrellas I once followed, nearly passing out because of the heat and crowds. ¬†And I still go back for more. ¬†And am slightly more sensible now – only do St Marks before 10am. Avoid Le Mercerie. ¬†Wander and find Bar Ai Artisi for an amazing coffee instead. ¬†And if it’s any time noonish or after, get a Spritz!

You’ll find that one of my main loves is cooking. ¬†And cooking Italian food mainly. ¬†That fruit and veg boat I mentioned. ¬†I stare, longingly every time I’m there and tell myself that one day, I’ll take a sabbatical from work, rent an apartment in Dorsoduro and live like a Venetian for 3 months. ¬†In my dreams of course. ¬†Oh yeah, Dorsoduro. ¬†I’ve said it a few times, and no matter how many times I’ve been to Venice, it’s my favourite area. ¬†Less touristy, if that’s what you like. ¬†I would go so far as to say quaint. Stunning.

In September, it’ll be my 6th time in Venice, the parents 12th. ¬†And I know that I’ll find somewhere new for us to see. ¬†It’s actually a little scary. ¬†That for somewhere so small, there are still these teeny tiny places that are so wonderful and that are waiting to be discovered. ¬†Or, as in the case of the last time, huge big Palazzos……

I have no idea if I’ve described how it really makes me feel. ¬†Down to how it makes my tummy leap with happiness.¬†But here is me, post fibro diagnosis, up for goodness knows how long, just off the plane, with my Campari Spritz.

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Loves of my life.. #1

I’m thinking that part of a blog is about getting to know me – so that when I waffle on about something, there’s a reference as to what the heck it is! ¬†My family are pretty much off limits, as I don’t think they’d want me talking about them and posting pics, but they are obviously the A* in a list of loves of my life.

But loves of my life #1.

Today, I’ve spent the majority of the day indoors as I’m still not feeling grand, missing all the lovely sunshine, I have appreciated two felines even more today.

Probably one of the best decisions I ever made was to get my fur babies. ¬†When I’m feeling down, they know. ¬†When I’m in pain, they know. ¬†When I’m having a good day and feeling fun, they know (and usually leap around on me). ¬†They’ll probably feature quite a bit in the blog, be it for the fact they lay on my leg / back and purred when they were hurting, or woke me up at 5.30am by leaping on my head. ¬†So I thought that I’d introduce Miss Molly and Mr Rafa to you guys. ¬†My 2 and a half year old BSH rascals, and loves of my life.

This is them, Molly looking after me when I was off sick one day, and Rafa looking after me while I was working from home the next.

Oh, by the way, is anyone else UK wise dreading the clocks going forward tonight?  Like I need yet another hour taken away from me!  However, did someone say campari spritz?!

For every down, there’s an up..

Positivity, as I’ve mentioned before, is something I like to grasp onto, much like I grasp a Campari Spritz….

So I’ve made up this thing for myself, the idea that for every down there’s an up. ¬†Today for instance. ¬†I cried a few times during the night because I wasn’t sleeping and in pain, which was a down. However, I went into work for a few hours and completed a project I’ve been working on, which was an up. ¬†I’m not saying they balance each other out, I’m just saying that looking at the¬†positives you achieve during the day is beneficial.

I came out the shower hurting all over – it’s a down. ¬†The fact I got in the shower in the first place – that’s an up. ¬†I bent over this morning to feed the cats and my back went into spasms – that’s a down. ¬†I did it about 15 minutes ago and while it wasn’t fabulous, it didn’t spasm – that’s a huge up in my book! (Especially as feeding and watering the pushkins is obviously a daily event in my life).

Right¬†now, I’m grasping said Campari Spritz, with my knees and back slathered in essential oils (Edens Garden), smelling fabulous if not a wee bit medicinal, about to watch a bit of my rubbish on TV and focussing on the up. ¬†And hoping I can improve on last night. ¬†Reduced hours at work mean I get a bit more time in bed on a morning so I went to bed at 22.16 and got out of bed at 09.20. ¬†Guess how much sleep I got?? ¬†A whole 3 hours and 39 minutes. ¬†So the down is a pretty big down, but I’m hoping even 10 more minute will turn the down into an up.. Here’s hoping!

A body pillow…!

Just bought a 9ft body pillow from ‘timeforabargain’. ¬†Have no idea if it’ll help but hey, am I right in thinking I’m not the only one who’ll spend money on something that might help me get more than 3 hours sleep a night????

Day 1 of blogging

It’s Wednesday morning and I’m at home, heading into work a bit later today thanks to the joyous flare. ¬†So I figured it would be a good time to say a little bit about who I am, other than the fact that I’m Kate from Sunderland….

And I’m stuck!!

Right. ¬†Family, have the most fabulous parents, Mags and Pops, and a wonderful sister, brother in law, 2 nieces and a nephew. ¬†They hate the fact they can’t take the pain away from me, but were all there for me yesterday when I came back from the doctor and sobbed ¬†my heart out because I just didn’t know what to do. ¬†I don’t want to take time off work sick, but at the same time, I can’t push myself any more. ¬†In my fur family, there’s Molly and Rafa, my beautiful BSH cats who always know when I need them to sit on my knee! ¬†They are completely barking mad, total rascals, and have their very own instagram page @molly_rafa_british_shorthair . ¬†As you do…

Work.. ¬†I work for a local council and love the job that I do, I’m really lucky.

Health… My sister says I should be taken apart and put together again, I’ve been a right crock for a few years now! ¬†It all started when I was about 17, with problems in my right knee, which the doctor thought could be growing pains. ¬†Nothing they tried worked, and eventually, about 10 years later, I ended up getting yet more tests and physio. ¬†Then my jaw started to hurt… ¬†TMJ was diagnosed, I chewed through one splint, and am currently wearing the second one every night and it’s holding on there at the minute!

The fibro was diagnosed about 3 years ago, I started to get worse pains in my neck and back and the docs put all the things together, did some blood tests for other things, and fibro was what they came up with. ¬†And once I did research (lots of research), it made absolute perfect sense. ¬†I’m a few years along on this journey now, and still coming to terms with it in a lot of ways. ¬†I’m slowly learning what I can and can’t do, what I can push myself to do and what I need to say no to.

I know, from all of my research, that there are tons of blogs out there from people with fibro, people who are much worse than me, people who are also much wittier than me, but it’s my story that I want to tell. ¬†This flare, as I said yesterday, is the worst one I’ve ever had, and it’s putting things into perspective for me. ¬†I am so used to dealing with this on my own, simply because I don’t want to bother the doctors every week, because I don’t want my family to worry any more than they already do, because I’m still not sure if people on the outside actually believe that I have this or that the pain is that bad. ¬†So now, I need to get it out there that fibro sucks. ¬†That it’s just awful. ¬†That I wouldn’t wish it on anyone. ¬†That it has changed my life in so many ways – most of those are negative but there’s still some positives. ¬†And that’s probably the main thing you should know about me. ¬†I try to stay positive. ¬†I try to stay the bubbly Kate that everyone knows, and I really hope that never changes!

 

So here I am…

So.. I’ve been told for a little while that I should write a blog about my battle with fibromyalgia. ¬†Even if not for anyone else to read, just for myself. ¬†A bit of a public diary shall we say.

My name is Kate, I’m 36 years old and live in Sunderland, UK. ¬†I was diagnosed with fibromyalgia 3 years ago after years suffering from pain in various parts of the body. I had physio on my dodgy knee, then got TMJ, then other things and finally we realised that it was the dreaded fibro.

And here we go…

What triggered me setting up the blog today was the fact I’ve been suffering from the worst flare I’ve ever had. ¬†It’s been bad for about 10 days now, and today I finally went to the doctor. ¬†Right now, it’s maybe not the time to write war and peace but hey, the first step is complete. ¬†And it feels pretty good!