Tag Archives: spoonie

Beginning Of the End (of the year…)

Already yet another Fibro/Fatigue flare-up… and just before Yulemas (as in Yule / Christmas). And just when I want to see Star Wars: The Last Jedi, too…

More fever, more pain, more exhaustion: I’ve been up all night for days, I’ve barely slept in nearly a week. Needless to say it is not going well. It’s a good thing I have my new mattress and catheter… I know exactly how much worse it would have been if I didn’t have those.

The worst feeling is that I still cannot reconcile how much absolute control this/these condition(s) have over me, how it dictates my personality, how the pain and exhaustion prevent me from even leaving my room or sometimes even my bed. During a flare-up I can do virtually nothing, and it seems that no matter what precautions I attempt, they’ll turn up whether I like it or not.

So you might not be surprised to know I would rather Yulemas disappear and I couldn’t care less about it this year. I can barely muster the energy to even want to see The Last Jedi  and I’ve been so excited about this for two years. My friend and I were supposed to go to  Christmas thing at Lyme Park too, and after a whole load of flare-ups, one after another, after another, that now is too off the table, amongst many other things. It better not take Star Wars away from me…

There’s so much I had plans to do, now it’s Yulemas, nearly the end of 2017, and I’ve  achieved precisely nothing from this year (unless you could finally finishing PC edition of Dragon Age II…). Instead of achievements, it’s been yet another year of loss. Even losing my best friend to a year or two travelling around South America (although, bless her, she still makes sure she’s there for me if I need her).

The weather has destroyed so much of my health (whatever flimsy amount of it there was), everything from severe storms and torrential rains, to terrifyingly low isobars and bloody snow. Plans have been destroyed. I lost the remainder of my mobility this year.

It’s been quite the Annus Horribilis.

And I doubt it’s going to get any better in its final week.




Better News

The weather is still terrible and the isobars continue to fall… and having checked the weather app, it appears this is expected to continue all the way into July.

Quite typical, really, considering the news I’ve been given today – you know, after the four days of hot weather and nice days we had…

I’m finally getting my chair on Friday (it’s Monday today) – Horrah! The nice lady who had been dealing with this even took the time to say how much she actually liked it (I put some interesting design choices on it) and that all the colours etc went really well and it looked great. So I’m hopeul I shall appreciate it for its practical and aesthetic reasons.

There is a long way to go still to stabilisation, but this is definitely a trophy chievement award along the way.

Three more days until Parole… 😋😎





Stairlift To Freedom

Free-From Food… But Not From Pain…

I’m going to take a wild guess and say that the unimaginable pain I have experienced (again) having eaten (quite a lot of) a wheat product, means I really really do need a Gluten Free Diet. The pain, distension, crushing, cramping, discomfort and nausea was a pretty good inidcation my belly was not a fan. Now I shall be officially saying I’m almost 100% Gluten Free… One more new diet to add to all the others – and a whole heap of more food to throw into the “Naughty Poison Pile”. It’s getting to be a really big pile, too…

I have been testing this theory for about a month or two. At first it was dabbling with taking away key things like pasta and bread and replacing them with non-wheat options. But the less gluten – or wheat, specifically – I ate, the more it hurt when I did eat it. After about a month of being about 70% GF, I had a small pizza from the local takeout, along with small burger… and the pain from it was unimaginably excruciating. After that, I ramped up my experiment to being around 90% GF. It was going so well, too…

Last night I tried something made with wheat protein – I wasn’t quite sure if I would react the same, so I chanced my arm. With this gamble, the House won and I was virtually crippled by the agony it created. It’s only just started to dissipate now, and it’s more than 24 hours now since it first started. It took – surprisingly – a small dose of Cognac (Covorsier V.S.O.P., specifically) to help. Aparently “Fermented Food”, with it’s “good bacteria” can aid digestion of things that inflame and cause bloating, hence good for treating gluten exposure. I had already tried peppermint, as well as nettle and peppermint, herbal tea, to no avail (they used to work better before I started the GF diet, and the reactions became extreme). With the Cognac also – obviously – having painkilling effects too, it worked quite well to bring the pain and distension levels back to “almost bearable”.

It also turns out that gluten exposure when you’re sensitive to it can cause quite a range of unplesant side-effects:

  • Muscle and Body Aches
  • Joint Pain
  • Fatigue
  • Bloating or Gas
  • Nausea or Stomach Cramps
  • Constipation or Diarrhea
  • Rashes, Acne, or Other Skin Disturbances
  • Headaches or Migraines
  • Depression or Anxiety
  • Brain fog
  • Irritability
  • Exacerbation of Existing Disease Processes

When I found this, things made more sense. Especially about today and tonight – I had quite inexplicably being extremely hyper-anxious about the smallest thing, almost to the point of paranoia. Now, I have great anxiety, but this was different. More like… terror. Dread. For no reason whatsoever… There is no way anyone can be overwhelmed with pure panic at the thought of possibly taking a character in a computer game to a different town to explore… Not anyone who isn’t quite disturbed already.

This actually reminded me of the time I took Prednisolone last year, when I became so hyper-anxious and paranoid, I was more terrified than a character in a horror movie, and staped awake for over 72 hours straight because I was too terrified to sleep. I knew this wasn’t even anywhere near close to what I was usually like, and when I read this list, a great big penny dropped in my head. It’s not recommended for Auties (people with Autism) to use gluten in their diet. Most who try it seem to prove this theory correct – and looking at the possibly effects gluten exposure can have on a sensitive person, it’s very clear to see why. They’re everything you do not want exacerbated in yourself – many of which you’ll already manage to do very well on your own, and definitely do not need any extra help with. The same goes for Fibromyalgia too… So there is clearly more to following a Gluten Free Diet (aka GF / GFD) than just a badly upset tummy, as well. Thus, I will be following it as close to 100% as possible, to avoid going through theis again.

It’s certainly something I do not need on top of everything else that is going on… least of all the awful weather conditions of gale-force winds of 50-70 mph and the threat of severe snow flurries in the next two or three days. So far, the weather has been warm(ish) and wet and soggy – awful conditions for someone with Fibro. It’s rendered me almost completely immobile and left me with excessively crushing contracting muscles all over my body. I’m in a rediculous amount of pain I cannot prevent nor properly alleviate, feeling like I’m being crushed inside a giant BP cuff with no way out again. Now the weather is changing again, it’s making this flareup worse, and it quite frankly feels like it’s forever relentless.

I’ve found that using hommade essential oils massage oil is the only thing that seems to help. One in particular helps a lot with this “BP cuff” cramping and alleviates the pain and un-squishes some it:

Carrier Base: Sweet Almond Oil

Oils: Lavander, Black Pepper, Sandalwood, Rose, Clary Sage, Peppermint

Thanks to using this, I’ve been able to be a little more comfortable during this difficult time… and lets face it, it’s not going to be ending soon, either. Thankfully, trying this has been invaluable, and it’s the third or fourth essential oils recipe that’s had quite the impact upon me. Finding good essential oils for Fibromyalgia has been invaluable, as has good essential oils for Autism.

I hope now I have worked some of this out, and as the gluten/ wheat is removed from my diet and my system, my sleep patterns, mood and anxiety will change for the better. Even a slight change would make a difference at this point. Going to “sleep” (or what vaguely passes as barely more than a 3 hours catnap) at 6am isn’t great, nor is being extremely despondent and hyper-anxious. Therefore, any change would be for the better if it eases up on any of these things. So far, it seems to be isolated to just wheat, but we’ll just have to see, as I don’t have a lot of other glutinous types in my diet. Hopefully, it is – it’s bad enough I’ve had to give up some of my favourite things, not to mention all the things that are not obvious and contain gluten or wheat (including chips, of all things…). Quite a few of my vegetarian soya products (sausages, burgers, roasts, etc, etc) are wheat-based, so they’re also out on the Naughty Poison Pile, too.

On the bright side, in this day and age, there is quite a range of GF products available, with some places making certain things that are gluten free as standard – such as Tesco’s breadcrumb hams or Finest range sausages. I actually prefer the GF buns and pitta breads… and thankfully, Genius makes blueberry muffins that are possibly even nicer than the normal ones… so not all is lost!

In fairness, urging that short period I was quite strict, I didn’t do too badly, and went to bed earlier without any bad/freaky/horrible/disturbing dreams. Now I’m having them every night, which isn’t great, and I’m frankly once again too scared to go to sleep because of them. The hyper-anxiety is also destabilising my von Willebrand’s Disorder (my contrary blood gets thinner when stressed – the exact opposite of what it’s supposed to do, and always has done), which isn’t exactly pleasant – although thankfully not dangerous. It is quite clear to me now that it is imperative that I start at least a 95% GFD (if I can’t quite manage 100% quite yet!) immediately and never look back. There’s not much of an excuse – there are plenty of options out there these days, which is quite the contradiction to what I was faced with when first having to be faced with such issues when I was a child. Back in the 1990s, being a vegetarian (especially as a child) was nearly impossible, and adding certain allergies/intolerances to that made life complicated sought to give even Stephen Hawking’s vast brain a headache. Now, you barely have to go looking for the stuff – it practically bounces right up at you in some places now.

Free-From is a norm… even if the products aren’t incorporated into the general population of groceries, there’s a half-decent choice, and the supermarkets are proud to carry them now – and even make their own. Large brands even ensure they have Gluten Free/ Dairy Free/ Wheat Free/ Soya Free (etc) written on their products  right there next to the hard-won Vegetarian logo. Life as someone with a long list of intolorances has now become much easier, and thankfully much has changed in the past quarter-decade (ghah!!) since I first walked down this difficult road.

Now, quite frankly, I have absolutely no excuse.



ID Me… Where Did I Go?


… Who Am I?


Onset of any Chronic Illness destabilises everything; it changes everything.

Your whole life will never be the same again.

To survive, you need to accept, adapt, to keep moving forward – like a shark, if you stop swimming, you stop living.

Now you need to ask youself once again…

Who Am I?