Yep. I confess I’m mad as heck, at the end of my tether, spitting feathers-angry just at the moment. Sometimes you have times like that with a chronic illness, don’t you? Well, I do.
Why do I – and so many of us – have to be so ruddy sensitive to stuff all the time? Honestly, it is just SO limiting, isn’t it? Don’t get me wrong: I have a great deal to be thankful for in my life, but is it too much to be able to eat something tasty, drink something other than RO/highly filtered water, be able to walk into a shop without worrying about stinky bloody air fresheners, meet someone for something instead of water, not have to make a meal and take it with me wherever I go, not have to cook every meal from scratch?
It is really getting my goat at the minute. And I know I’m a lot better than many!
I used to be a real foodie. A great cook. I loved having people round. I loved going out. I never ate that much; P and I used to share a curry in the local or have two starters. But I bloomin loved it. I love atmosphere, people, joyful, loud-musicy places. I can’t do any of that now, and I miss it so much.
I am sick and tired (literally) of cooking sodding roasted vegetables and eating fish. Oh, yes, everyone says: that’s lovely. Fresh fish from the harbour and lovely roasted sweet potato. Yum. Yes, but they don’t know I upended my whole life so I could get tasty fish as my only protein, moving to Cornwall so I could eat without throwing up with the smell of slightly-off fish. And how would you like it if you ate the same meal EVERY. SODDING. DAY, twice a day for lunch and tea? No, I didn’t think so.
People really have no idea. My heart literally breaks when I hear so many of you far worse than that. I mean: lettuce for most meals. It is frankly not good enough that medicine is not helping us. They’ve no clue what’s going on. They don’t even believe us most of the time.
And don’t get me started about the pain and symptoms we have to endure because we can’t tolerate meds. Or the very real fear we have of ending up in hospital with doctors who don’t believe us, give us dextrose (corny) drips, pump us full of meds that will cause rather than dampen down a dangerous inflammation.
Neither can many of us take supplements to help ourselves heal.
It’s just ridiculous. Painful. Frightening. Joyless. I grieve for my lost life, truly. I honestly don’t know how I’ve coped for the last 10 years sometimes. People say that don’t they: I don’t know how you do it. BECAUSE WE HAVE NO SODDING CHOICE, that’s why! What are we going to do: lie down and die? It is a constant fight, mentally, emotionally and physically.
And we’re left largely on our own with it. We don’t fit a cosy diagnosis box. Medics give up. At least mine did, years ago.
What’s brought this on? !
Well, remember in my update here I said I was going to take a break from so much clinic work and see if that would affect my sensitivity levels? Many of you had advised me to do it, and I even advised you in the Healing Plan. Could the fact I was talking about illness, and particularly food sensitivity, a lot be perpetuating my own problems? I thought it likely, so I duly stopped.
And I thought I’d cracked it.
For three months, my sensitivity levels dropped significantly. I had hardly any migraines or TMJ/mouth pain, I managed to get several new foods in, including grapes, kale, strawberries, raspberries, beef – beef! – something to fill me up finally! And I never even used to like meat! It’s just NOT FISH! I had a sort of roast dinner for Christmas – a miracle.
I just generally became less sensitive to stuff: smells, could drink ready-ground coffee, use different loo roll when the shops ran out, not worry about the little ‘mats’ delicate fruit sit on and what they might have been sprayed with, yada, yada, yada.
But then it stopped again. I’ve now lost most of that and have been in pain with my jaw now for 38 days. I am eating painkillers rather than new foods.
Let’s see what I’ve learned so far about hypersensitivity illness. I’ve learned that stress definitely exacerbates it and when I focus on relaxation techniques I am better, but it doesn’t last. I seem to be able to get it better for about 3-6 months (after the Healing Plan was my best effort so far). But then the sensitivity ratchets up again and, before I know it, I having symptoms again and it slowly dawns on me that I’ve eaten something ‘wrong’ and that turns out to be one of the new foods, or all of them. Generally, I’ve managed each time to keep one or two of the new foods, so my diet has been widening over time, thank goodness.
I do often wonder, though, if the pain and stress is worth it when it fails again. I try to stop trying, but then I get so depressed and find it very hard to push the food into my mouth, I’m so sick of it. Think Dawn French shoving more Brussel sprouts in at the Vicar of Dibley Christmas dinner. THAT is exactly how it feels. So, I stop eating. I literally can’t eat sometimes. And, of course, I’m aware that just makes the whole physiological problem worse. Trouble is: I feel better not eating. There’s nothing to react to. Nothing to start my mouth pain off. Have you tried fruit on raw tissue?
It’s a cumulative thing, I think. I put foods in, which clearly builds up somehow in my system, add in some stress (thanks Covid rise after Christmas) and I assume my histamine bucket starts to overflow.
Yep, I think histamine must have a lot to do with it – as per my Histamine Factsheet. But it can’t only be that. It takes about 3 months for my system to settle down again properly – histamine does not take that long to come down.
So, I am starting to gather all the information and research I’ve come across and kept on multiple sensitivity over the past couple of years and I’m going to pull it all together for us. I decided a few months back not to write it – more focussing on food issues, not good for me – but it seems ignoring it made no real difference that will ‘hold’ and I’m back to square one before the experiment.
I’ve done all the right things with this illness: I’ve accepted it as a thing that just ‘is’ in my life. I’ve tried not to fight it. I’ve asked it what it wants to tell me – and hence the trauma therapy and ACE work, which I’m pretty sure is what triggered it. I’ve removed the major allergens and inflammatory foods, going much further than AIP (autoimmune protocol), which is more than enough for most people. I think if I could take supplements, it would help enormously, especially since those of us who live with this illness are permanently malnourished macro- and micro-nutrient-wise. I’m sure I would heal a lot faster and be able to plug some of the gaps that are still causing the issue. Many of you can and I know it helps.
But in some cases, we’re still missing something, aren’t we? Of course, it won’t be one thing; it never is. But I’m determined to find the missing jigsaw pieces for me – and you. I’ve got the fire back in my belly and I will NOT let it steal my life and joy, nor yours.
Let’s say our mantra and truly believe it:
This too will pass. It is temporary.
And, if I have anything to do with it, it will be.
Phew. That’s better. A good rant always helps. Thanks for listening. Apologies. Normal service will resume soon, I promise 😉