Musings and Snoozes

The same, but different


So, I have a new diagnosis, or at least a secondary one. Not sure how I feel about this…

I decided that I wasn’t going to go to my appointment yesterday and just tell them everything is ok. Because it’s not. The last few months have been pretty hard and I’m rapidly heading towards not being able to get up in the morning. I know the cold, dark starts don’t help, but when you wake up for the hundredth time in a row feeling like you haven’t slept since June, you do start to struggle a bit. So with determination, I headed off to my appointment ready to rant.

As it turned out, I was too tired to rant by the time I’d done half a day’s (pretty stressful) work, driven across to Aylesbury, found a parking space, walked halfway across the hospital to my building, and then sat waiting for half an hour to be seen. So ranting turned into more of a pathetic “I’m fed up” sort of mope, but it must have got the point across because my specialist asked me all sorts of new questions.

Now I’ve had plenty of little niggles over the last few years, but the majority of them I just put down to bad luck and/or something I just have to live with. Turns out I should learn to mention these things every now and again, particularly in this case a) having a dry mouth nearly all the time and b) my bloody awful teeth that seem to constantly need more fillings, no matter how well I care for them. The latter of these had been bemusing my dentist for months, to the point that he even made me keep a food diary to make sure I wasn’t secretly having vodka and jelly babies for breakfast every day. But it seems we might have an answer…….. :

Sjögrens Syndrome An introduction to…..

No, I’d never heard of it either and given that only 3-4% of people suffer it, I’m not surprised (go me being special though!) Essentially it seems to boil down to being very much like fibro with additional dryness issues (eyes, mouth etc), but it’s an autoimmune disease so it’s my body’s immune system attacking all these moisture creating bits of me and therefore causing the problems. But this then in turn comes with extreme fatigue, muscle and joint pain/rheumatoid arthritis, IBS type symptoms (my stomach/intestines get attacked too 😦 ), rubbish circulation, lack of temperature control (blue fingers to excessive sweating in five seconds) and rubbish teeth, due to the lack of saliva producing going on. Essentially all just a bit ugh really.

So the next step is to have a lip biopsy (meep) and then put me on some new medication. Can’t say as I’m thrilled at the thought of a biopsy (I am a wuss at heart), but I’m assured that it’s fairly harmless and heals pretty quickly. The drugs sound promising and much more effective than throwing antidepressants at me, so I’m cautiously optimistic.

So there we are. First ME, then Fibro and now Sjögrens. I must say this one has the best name of the lot, so here’s hoping this one sticks. If I’m going to be ill, it might as well sound good 🙂

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Friday Nights and Flying High

This has been a very long week and I’ll be honest, a fairly meh one. There haven’t been particular reasons for it, i just haven’t really ever got going! It has however been improved by being made permanent at work. Woo! While it seemed a great idea to take a 9 month contract when they offered me the job originally, I must admit the last couple of months have been a bit uncomfortable with the prospect of being unemployed by February! On top of that, I’ve had some very positive feedback from colleagues and managers with regards to my work, so between taking on a more pro-active role in other regions and getting my first official trainee to train up next week, I’m actually feeling rather positive 🙂

Sadly Friday is not quite the end of my week as I’ll be in work tomorrow morning, but after that I intend to be in full on relax mode 😀 Saturday night is celebratory dinner at Jon’s parents, Sunday is the VNV Nation gig, and them Monday is snooooooze. I cannot wait 😀

So all in all, a pretty meh week has turned out ok. I must admit that knowing I can still make such a good impression at work, even when suffering the dreaded Fibro Fog, is a pretty good feeling. I think for once i might not put myself down and instead give myself a well deserved pat on the back. Or maybe a slice of cake.

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Me and My Bed


Jon often laughs at me when i get into bed because i make such happy sounding noises, but to someone with Fibro, bed is very important.

This week has not been a good week for getting up. I don’t know if it’s post holiday or just a bad week, but i haven’t made it out of bed much before 7 all week, which given that i usually leave at seven to start work at half past, isn’t ideal. Consequently getting into bed again each night has been blissful, and i think it’s important to consciously recognise this.

Hence the happy noises. As i collapse into bed each night i can instantly relax and know that that’s it for the day. I’ve finally reached that point that at seven am that morning, i thought would never come. And so i try to relish this, to try and make my body appreciate it and to try and remind myself to think about this moment when the alarm is going off the next morning, so i know it will come round again.

Sadly, due to the lack of getting a refreshing night’s sleep no matter what time i go to bed, nor how many tablets I take, it doesn’t actually make seven am any easier. Each morning is the same battle and the same frustration, but for those few moments each night I can at least savour the thought that I’ve made it through another day, and reward myself with the bliss that my comfy bed brings. Happiness is.

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