Tag Archives: Gluten Free

Reflex Runaway…

Coped with today by running away to Liverpool for the day.

How else does anyone cope with what happened?? I was in a tizz, all over the place, unable to cope, or even process, what just happened when that guy called to tell me the appointment had been cancelled and rescheduled… So my mother took me to Liverpool.

It’s a comfort zone for me – the closest I can get to feeling like I’m “home” without actually going all the way to London… I’m a City Mouse, and speciafically a London Mouse. I am lost without it. going to Liverpool is the closest I can get to it, and because its almost as familiar and comforting to me as London is, and has been a place of great comfort since I was a youngster, it was a sensible place to abscond to today.

img_0877This was the first time I had been out on a rather long excursion with my new chariot. She’s called Firefly, by the way… After the ship on the show of the same name. It did not start off well , but when we did finally manage to make it to the L1, it went Ok – until we had to leave, of course…

Liverpool city centre and the L1 is pretty wheelchair/ mobility friendly, and it was so easy to wheel around there in my new chair. I mainly went to Superdrug (I desperately need to dye my hair and needed hair dye…!), where I got some great lipstick shades from Maybeline, and to Lush to get my favourite healing foundation, Jackie Oates, and the most amazing shower gel, It’s Raining Men.

After a few minutes of looking at phones for my mother at Carphone Warhouse, we then head back to the L1 to meet with my sister. She’s not feeling too clever, at around five months pregnant and it’s maybe 20ºc outside… So she’s feeling the weight and size of the little Kitten inside her, bless her. We end up going to Pizza Express and eating there. I had gluten free vegan pizza (including artichokes, asparagus, red onion, and vegan cheese – it was so nice!) and a small glass of wine to help with the buzzing in my hands.

The weather was glorious, it was nice there, my sister was there, I was eating food in a restaurant that wasn’t going to half-kill me, and finally something good was happening on this day…!

Now all of that was a nice time. Then it all went weird again when we went back to the car and my mother attempted to pay. The machines wouldn’t work, and it took ages to get it sorted.  By this time it was 19:43 on my phone, and the place closed at 8:00pm.

Then when we got out we ended up going to wrong way, and eventually went back home via Speke (and John Lennon airport, where I saw no planes! 😲🙄) and Runcorn. On the journey, mam selected a way home I wasn’t comfortable with, so I got very aggitated, because of the state I was in, and I couldn’t stop being tizzy about the PIP appointment. It was now once again hanging over my head at a time it was supposed to have been over with and aggravating just about everything.

By the time I got home, I was in quite an aggitated state. After a couple of big panic attacks, and readjusting to being home, I decided to do my dance DVD to burn the anxiety of. Smile and Sway is a pretty fun DVD and it’s good for burning off steam whilst enjoying some good dancing, and interesting, fun moves. I felt better after doing this, and that was when I finally managed to get upstairs in a better mood, ready for tomorrow.

img_0879The physio is coming tomorrow (again). Apparently, they’re supposed to have some kind of “plan”… I don’t know what kind, or what I’ll be expected to do. Hopefully, I’ll also have a shower, so on Friday I can dye my hair (whilst watching the Wimbledon Men’s Finals as it’s brewing….!) – but we’ll have to see. What I do hope is there’s going to be something I can do to my legs, which just can’t move on their own, so they’re missing out on so much – it’s not like they can yoga and dance like the could do. And they miss it.

Hopefully, I’ll be up for it and be able to make the most of whatever she says I should to.

So, overall, it turned out pretty OK in the end… But it certainly wasn’t an easy one – and I’m so glad it’s over with now!


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.



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