The last 12 months have been a big challenge for me. From spending a week in the hospital with Missy, to waiting over 2 years for mental health, for me (and still nothing much) to a breakdown last summer. After that, I was seriously ill (more than usual) with multiple chemical sensitivities for more than 80% of my time. To say it was hard was an understatement. My illness seems to have increased its game again but it took me the best part of a year to figure that out.
My brain is seriously affected by chemical sensitivities, both in food and what I breathe. I have a really long list of foods that I cannot touch... like, ever! It's so bad that I now buy only fresh produce and the odd extra that I know is safe for me, such as Schaar gluten free bread (it has to be Schaar though). I'm very grateful that I can still eat some Cadburys chocolate so long as I choose the ones without gluten. Mars is a complete no-no!!
At least with foods, I have a level of control over what I eat. I often choose to go without food for a whole day if we're out and I can't get hold of safe foods, e.g. travelling for holidays where I can't take my own food through an airport. I have chosen to be very, very hungry rather than severely ill for a week. What kind of holiday would that be?
However, and this is big, I cannot control the environment from which I breathe. I am finding that my sensitivity to chemicals is far, far worse than ever. I'm investigating further with a neurologist. I finally found one who was willing to work with me and not keep saying it's a migraine. Sixth time lucky, I guess. It's been a 10-year journey so far. She is very nice though and I think I've piqued her curiosity.
So what sort of things set me off? Pretty much most things with an artificial fragrance or volatile solvents. So that includes (but is far from limited to) perfumes, aftershaves, cigarettes or vapes (really hate these), air fresheners, laundry detergents (I make my own), petrol or diesel fumes, cleaning products (also make my own), some pollens (but muck spreading doesn't bother me at all!), and airborne foods from the cooking process. To name but a few...
The only place where I have a moderate level of control is in my own home. I don't have any offending products in the house. I make my own cleaning fluids and laundry soap by using Granny's old school methods. It's far cheaper and more eco-friendly as well so really worth doing just on those grounds. My house is meant to be my safe place. I ask all visitors to not wear fragrances, although it often gets forgotten (or downright ignored by one repeat offender) so I have to have all windows open, even in winter to try to combat this. It's just as well I don't see people very often.
Last year, as summer was coming to an end I realised how bad it was all getting when I started to close windows and doors to keep in the warmth. Suddenly, I was constantly in a lot of pain, and severely ill. This is when I had to re-enforce the fragrance ban. But knowing that it will be forgotten at times (or ignored) I've bought an air purifier (affiliate link) with the all-important carbon filters as well as the more common HEPA filters. It's a giant for such a small thing! When we have visitors now and I feel my sinuses start to burn I put the air filter on immediately. I've had to learn to do it please or offend. I try my best to always be polite but it's always me that ends up suffering, so I really need to learn to be a lot more assertive with this.
The filter is amazing though. It's not even that loud. I leave it running after visitors as they leave their *fumes* behind after they are gone. Picture a cartoon character with stink lines coming off them and that's how I see it!
So what exactly, do these chemicals do to me? Well, one regular visitor wears a lot of chemicals (don't ask!) and while they are around my symptoms start to creep in and escalate.
First, I usually feel the back of my nose, sinuses and throat started to itch. Then it turns into a burning that gets worse and worse until my throat looks like it's been scolded (I won't show the photo as it's yucky but I did take one to show the neurologist). It's really painful. My throat starts to swell and I can't get enough oxygen in, presumably, the same reaction is going on in my lungs as breathing hurts. My sinuses get very, very congested as I actually bleed into the sinus cavities. Yes, it's that bad. But it gets worse. After the initial symptoms come the blinding (literally) pain through my face along the trigeminal nerve, which then spreads across the surface of my brain. It's when the blood vessels lining the brain are inflamed (meningitis) but it's caused by chemicals rather than bacteria or a viral infection.
Last September, hubby was frying some onions in a pan to go on his burgers. Onions are one of the things that I'm very reactive to if I eat them (or anything else in the onion family). This however, was the first time I've reacted from breathing the cooking fumes. The symptoms developed in the usual pattern for an airborne trigger. I was in a lot of pain very quickly despite going outside to try to get clear air. By the next day, I thought I had a brain haemorrhage as the pain was so severe. It's a 12 out of 10 for me, with childbirth being a 6-7 and gallstones a 10!!
When Missy and hubby got home that night they took me to accident and emergency. I nearly called an ambulance several times in the day but was afraid to in case they said no. In the last 10 years I've only once managed to get an ambulance despite needing one on a fairly regular basis. That's another story.
This time the attack was so severe I couldn't see as lights were unbearable, I couldn't move my head or neck for the pain and stiffness, and the pain was so severe I kept passing out in the waiting room. We were there for 11 hours in all but it only felt like 3 to me as I really wasn't (mentally) there.
The savvy among you will be wondering if I also had a rash. The answer was no on this occasion but I very often do have the rash (that doesn't fade under pressure). Yes, I had meningitis. I had blood cultures done, although I can't remember having them. Thankfully they put a cannula in my arm as later when I kept passing out I magically found a drip had been put in my arm. During all this time I was kept upright in a seat in the waiting room as there were no beds (as usual) and they were extremely short staffed (worse than usual). The results of my blood tests finally came back showing that I didn't have any infection. They had pumped me full of codeine and morphine by this point and it did nothing. So rather than find out what was wrong, wait for it... I was sent home. This is the usual outcome and why I don't very often call for help, but this time I really couldn't cope alone.
When something so simple as cooking fumes or the perfume of a stranger walking past me down the street can land me in the hospital, where there's nothing they can do and no painkillers touch the pain, you can see why I'm so determined to get to the bottom of this and protect myself at all costs. So for months, I've been doing a lot of research and soul searching. How do I move forward in life? How can I call this a life? What can I do to change it? And how do I put these things into practice?
This is a big part of why I'm writing again. I'm trying to consolidate my thoughts and work out an action plan for a better life. I'm trying to look forward (although I do find that hard at the moment as I'm scared of the past happening again, and again...) and work out how to get to the wholesome life that I so desperately crave and need. I need to turn surviving into thriving.
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| Enjoying the clean air in the woodland |
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