Musings and Snoozes

I have salt in my veins and sand in my heart 💜

After two failed attempts, we finally made it to Brighton yesterday. I can’t tell you what good a bit of sea air does – it just clears everything and makes life better. Couple that with amazing friends, and it was just the day I think we all needed. 

I’m learning to make long days out like yesterday work for me. I know I can’t do as much as I used to be able to and I know I’ll suffer the day after regardless, but the fact that I can still spend a day out with friends and have a great time means the world to me. OK there are more stops for coffee and sitting than there used to be, and I now have no qualms in paying a fair bit for parking if it means not walking an extra mile to save money, but that’s OK, and most importantly, my friends are fab at looking after me and checking I’m OK. And I love them for it. 

So today has been a write-off, as expected. I hurt my foot paddling in the sea yesterday (damn pebble beach) so I can’t put any weight on it today. Plus my legs have seized up and pretty much stopped working. But that’s OK, I expected as much, I had no plans today anyway and so there’s been no problem lazing on the sofa all day. My only concern now is when I can get back to the gym – I don’t want to lose the momentum I’ve just found, so I’m hoping a bit more rest tomorrow and I’ll be able to go back on Tuesday, even if it’s just a gentle workout. 

But I can safely say that the beach, awesome friends, some sea air, traditional fish & chips, a spot of shopping (including my amazing Old Navy dungarees), and what can only be described as a comedy ride on the waltzers, makes every single bit of pain worth it. 

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Pancakes with abs

And yet I’m still not a size 8. Pfft. 

However, I do need to remember how much better I feel after a good workout, both physically and mentally. I remember telling my therapist that I count my gym time as “me” time and she suggested I use it as exactly that – it can be just as relaxing as meditation or mindfulness, only with the added bonus of being physically good for me too. 

Sadly however, when I’m sat on the sofa at home with a big bar of chocolate giving me the eye, I find it hard to remember all this! So I’m writing a list of all the positive feelings in the hope that I can motivate myself a little more the next time the sofa comes calling:

  • Moving makes me feel better – this one may be simple (and obvious) but the sheer act of loosening my muscles and getting a bit out of breath makes my whole body relax. Consequently I feel less sluggish and the pain decreases. 
  • It’s an hour of “me” time. Sat at home, listening to Jon play Overwatch, checking my emails, scrolling through Facebook….none of these things relax me. In fact I just get wound up that I should be doing something, but I’m too tired, and then I get pissy that I’m tired and I’m wasting my evening etc etc. So instead, I could just get changed, get in the car, and go kill an hour on the treadmill. Much better. 
  • I get to listen to my music. If nothing else, there’s something lovely about plugging headphones in and having the music take over. And it’s not something I do at home. So grab the headphones and go! 
  • I have *more* energy when I get back from the gym than when I started. I HAVE to remember this one. So often I’m tired and fuzzy and slightly lethargic (read lazy) and so I decide I’d be better off staying where I am. RUBBISH! Even if I go and only manage half an hour, it will still wake me up and I WILL FEEL BETTER!  
  • I feel like I’ve done something with my evening and more importantly, I’m ready to face the next day. All the endorphins from a good workout mean I’m in a much better place to take on the world. It stops one bad day rolling into another, and feels like tomorrow is a whole new start. 

I should print this out and pin it up around the house (primarily by the sofa, let’s be honest). It may be hard, and some days it’s damn near impossible, but if I focus on how much better I can make myself feel, then it has to be worth it. Plus one hour on the treadmill means an extra slice of cake, right? 

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Add it to the list! 

Another day, another hospital appointment, another new complication. 

I already have every single one of the above (bar RA at the moment thank goodness), but now I also have knee joint issues to add to the list – specifically maltracking. No, I’d never heard of it either. But coupled with the fact that, just like half my bloody body, my knees are double jointed and bend backwards (that is not as fun as it sounds), it’s causing a fair bit of pain. So I now get a whole new lot of physio, and hopefully some relief sometime soon. 

And actually that makes a nice change. None of my usual illnesses and complications have any sort of cure or even treatment for the most part, so it’s nice to maybe see an improvement in sight with this one. I’m reassured that as long as I’m careful then I’m good to carry on with the gym and yoga, so actually in the grand scheme of things, this latest addition isn’t so bad. 

In other health related news, I’m struggling with the fatigue again. The pain, despite today’s diagnosis, actually isn’t too bad at the moment – mostly because of the beautiful hot weather – but the tiredness is driving me mad. Getting out of bed is proving trickier than normal, trying to get through a day without brain fog is a nightmare, and then all I want to do at home is lay on the sofa. It’s driving me mad, because things are pretty good right now, and I haven’t got the energy to enjoy them. Sadly my consultant had nothing helpful for me, just a vague “well it does fluctuate with the lupus/fibro” – like I’m not already aware of that. So a new raft of blood tests to make sure it’s nothing else, and then I’ll probably just have to suck it up and get on with it. 

So that’s my 6 monthly health news done and dusted. One day I’ll go see my consultant and not walk out with a new problem! If nothing else, I haven’t got enough time to Pinterest all these conditions! 

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Summer is a state of mind

Aaah summer has finally arrived in England. Actually it’s probably arrived and nearly left again – pretty sure we’re due a thunderstorm any day now – but I am thoroughly enjoying it in the meantime. Except when I’m moaning, like a true Brit. So here’s my little list of all things fun, and slightly less fun, about summer:

Things I love about hot summer days:

Sunbathing – well actually shuttling to be precise. One of the joys of my various illnesses is that I cannot physically regulate my body temperature, hence I have to shuttle like a lizard . I have spent the last four days enjoying a cycle of sunbathing, tanning, sitting in the shade, cold shower. Rinse repeat. I bloody love it (except when I don’t, see further down). 

Along the same lines – the feel of the sun on my skin. Seriously, there is very little I love more in this world than the feeling of hot sun soaking into my skin. It is bliss. Of course I’m well aware it’s only bliss when you don’t have to actually physically do anything, like move, or work, but lying on the grass and soaking up all that vitamin D is all kinds of lovely. 

Pub gardens – there is nothing more satisfying than enjoying a lazy summer  evening in a pub garden. There doesn’t even need to be cold beer involved (driving, see next point), but just enjoying the late evening sunshine and moaning with all the other British people about how bloody hot it’s been. We’re never happy… 

Driving with the roof down – anyone who knows me knows I love my car at the best of times, but I particular adore him at this time of year. It goes back to shuttling – it’s boiling hot, I can get a tan, but driving at some speed down twisty country roads means I get the cool breeze too. Pure bliss. Plus people stop me and ask about my car. I love that. 


Things I don’t love about hot summer days:

Trying to make the pooch keep cool. Honest to god, it’s like having a small child, only thankfully she can’t talk back. There are currently two strategically placed water bowls in the house, the fan on full blast, and she’s wearing a cool-wrap around her neck. She’s still whining, still panting, and still hasn’t touched the water. Siiiiigh.

The aforementioned lack of being able regulate my body temperature. The shuttling is nice and all, but it’s also bloody frustrating to go from freezing cold to boiling hot with nothing in between. Also on a slightly more worrying scale, it also sends me light headed and I’ve been known to pass out because my body can’t cope with very warm to very cool and vise versa. Consequently I spend a lot of my time having to sit with my head between my knees until the feeling passes. Beautiful. 

Not being able to sleep. Seriously, 90% humidity at 3am is unnecessary. I’ve been lucky enough to be off work so far this week so three hours sleep at night hasn’t been too much of an issue, but it can sort itself out before I have to go back to reality tomorrow. 

Really, we love to moan about the weather in England – let’s be honest, it’s always either too cold or too hot – but I love it and we’re bloody good at it 😊

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This is my church, this is where I heal my hurt

So I left the house to buy hair dye. I’m sure this is not quite what I’m supposed to do when I’m ill, but it’s a medical necessity. Some people crave chocolate, I crave hair dye. Well actually let’s be honest, I crave both, but shh. 

Seriously though, half the battle in getting better is feeling better about myself, and my current fading, actually worryingly grey hair at the moment is not helping with the feeling better. So I ventured out into the real world, full of people and noise and small children to get my fix. I’m now sitting waiting for Jon to arrive so we can go grab food and I can sit in the corner, recovering from the shock of the outside world. But I have very pretty fiery hair colour now, so it will be worth it. 

I am, I think, actually getting better though. The cough is more annoying and less hacking up a lung now, for which both I and the pooch are forever grateful. I’m just left a little breathless when I walk and absolutely bloody shattered. I slept for 17 hours last night and I still don’t feel it’s enough. It’s taking all my effort to put one foot in front of the other right now. But I’m doing OK in looking after myself, and I’m hoping that seeing  friends this weekend will at least cheer up my mental state a little 🙂

So not dead – yay. I just have to try and stay awake long enough to enjoy it. 

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Erm… So not dead… 

So I feel I should update after this morning’s self-pitying mope at 3am.
I’m not dead. Obviously. Though I’m pretty sure a short spell of death would be less painful than this. Instead it turns out that the annoying cough of doom has triggered asthma, which would be why I can’t actually breathe without sounding like a wheezing 90 year old. Yay. 

So I, maybe somewhat stupidly, rocked up to work this morning. I didn’t stay long and actually I’m not sure I was much of a help while I was there, but at least everyone got to experience my death first hand, so I can’t be accused of skiving that’s for sure! Honestly I don’t know why I need justification when I’m ill, but I do. Needless to say I’ll be behaving myself and resting for the next few days, especially as Jon is now home to shout at me. 

I now have an inhaler, which is a whole new experience for me. I don’t like it, it’s weird, and dry powder really doesn’t mix well with Sjogrens symptoms but whatever – at this point I am willing to try anything, including the odd herbal chewy sweets which taste strange, yet satisfying. Mama is also coming over tomorrow to cook me my favourite food (honestly, I don’t care that I’m nearly 30,  it’ll make me feel better dammit) so all in all, I feel I should recover very soon. If I don’t, there will be hell to pay. Just sayin. 

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A strong independent mope

Oh this is hard. It’s 3am, Jon’s away, the rest of the world is asleep, including the dog who is less than impressed at my coughing up a lung every ten seconds, and I feel horrible. To top it off, the only doctors appointment I can get for tomorrow is when I should be supporting a training session at work, and knowing the lecture I’m going to get from my doctor about looking after myself, I’m fairly certain I’m going to have to end up cancelling my own training sessions for the rest of the week. Which I then of course feel guilty about because it inconveniences everyone, despite the fact that realistically I know that no one needs to be stuck in a room with me for 3 days this week, while I cough up the aforementioned lung. 
Ugh, just horribly overwhelmed and in need of a hug. Where’s my damn husband when I need him?! (the answer to that is in a field in Dartmoor somewhere with absolutely zero phone signal.) I can only do independent for so long, and I categorically can’t do independent and ill. Hmph. 

So I shall continue to annoy the dog, drink some medicinal chocolate milk, down half a bottle of cough syrup, and try not to have too much of a cry because it makes me bloody keel over coughing. 

Feel free to send kind thoughts and gentle pats on the head. Thanks. 

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A Lovely Love Story 

I don’t normally do too much mush, but after four long days of Jon having to put up with me being sick and rubbish and pissy and mopey, I couldn’t help but re-read this and share. 

This was the reading at our wedding,  and it’s just as apt nearly four years on as it was then. Jon puts up with a lot (as do I, I like to think), but I still smile every time I walk past the pair of beautiful dinosaurs who now live on the window ledge by the stairs. They’re a constant reminder of my own Lovely Dinosaur and just how lucky I am. 

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There just aren’t enough spoons in the world

I’m supposed to be in Brighton right now. Instead I pretty much haven’t been able to move all day. There are not words for how angry I am about this. Although clearly as I’m writing this, I’m going to try and find some. 

Guilt. I’d have made a good Catholic with the sheer amount of guilt I feel about putting myself first. I know in theory that I’ve done far too much this week because I don’t like letting people down, or can’t bear the thought of being judged, but I know I’ll do it again next time. And here I am, paying for it.

Mostly I’m so pissed off at my body’s timing to get sick. Or sicker than usual anyway. I can fight the everyday pain – the tiredness, the aches – but throw a head cold at it and I don’t stand a chance. And then I worry that it sounds so pathetic – it’s only a cold, right – but when your body doesn’t work at the best of times, this just kind of finishes it off. Not helped by the effects of the Sjogrens Syndrome, which just makes my face swell up and my throat close up. Attractive. Don’t get me wrong, there is no one among my friends and family that make me feel bad about it, I do this entirely to myself, but I can’t help it. Saying no to the guys last night when I realised that there was no way I could keep myself upright long enough to enjoy the trip down to Brighton, was so hard. And yet my friends never fail to be understanding and encourage me to look after myself. I just haven’t learned to do the same for myself yet. 

On the plus side, or at least on the more fun side, I made it to the Walk Off the Earth gig last night. I suspect going into London and standing so much was probably the last straw in breaking me, but it was worth it for the two hours or so of such good music and a proper party atmosphere.

A very much appreciated birthday present from the lovely Danny. Music never fails to keep me going, no matter how bad things are, and for a couple of hours I could forget everything and just dance and sing along with 5000 other people. 

There are a surprising lack of videos taken at the gig last night, so I’ll just leave you with a couple of their official ones instead. KRNFX wasn’t there sadly, but he was replaced by Bellatrix who was all kinds of awesome. 

If anyone needs me, I’ll be the one moping under my blankie on the sofa. Feel free to send chocolate and other such necessities. 

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