Thursday 21 February 2019

It's so hard to even give stuff away in the UK!

Since the New Year, hubby and I have started to declutter slowly. I always feel like we're drowning in stuff or 'stufficating', as I accidentally said the other day! It's even worse after the festive period, although we did calm it down somewhat this year compared with years past.

Still, we have accumulated a lot of 'stuff' in the last 10 years and I am sick of trying to find more storage. The answer was obvious all the time, just don't have so much 'stuff'!

Somehow, we've fallen into the consumerist trap of feeling we need 'stuff'. I know from experience how liberating it was when I sold almost everything I owned 13 years ago and moved to California (from the UK) with just two suitcases.
My tiny human, made in the USA!

The year I lived abroad, I only bought what I thought I needed. Looking back, even then I could have bought less, despite having my daughter while living in CA. We didn't buy a lot of 'stuff' for her as we were in a small apartment and didn't know if we were going to stay. We didn't. After a year we came home with a new tiny human in tow.

Oddly though, when I costed the price of moving our minimal furniture and possessions back to the UK it turned out cheaper to pay $1000 (roughly) to have it all shipped than it would have cost to buy these things again when we got home. I loved the lower cost of living in CA. It made me see just how expensive the UK is.

A decade later, I'm back to being overrun with 'stuff'. I fell back into the trap of consumerism, even though I thought I knew better. Granted, some of our furniture is secondhand but I still wonder if it was an actual need when we bought it.

Over the last 6 weeks, hubby and I have been tackling one area of clutter that bugs us at a time. We warmed up by sorting out our bookcases, CDs and DVDs. About half the books were put aside for charity. Missy doesn't read the babyish books any more and we had some that we didn't expect to ever read again. Most of the DVDs went as we don't watch them very often. Just the favourites were kept for when our internet (frequently) goes down. So into the charity box they went.

Encouraged by our progress (and the neatness of our bookshelves) we tackled the sideboard cupboard. I'm sure that stuff hadn't seen daylight in nearly a decade! Most went into the bin or charity boxes. We were on a roll. We tackled the kitchen cupboards, larder, even my office has been started. Then we needed to take the boxes to charity and things stalled.

First of all, I have to do things in little steps so Marie Kondo-ing our 'stuff' isn't feasible. But also, we were storing loads of boxes and bags downstairs waiting to go to charity after the rubbish was taken to the tip.

After the snow cleared (as that was our original time allotted for this task), we hubby loaded up the car and off we went to deliver our still very good condition 'stuff' to charity.

My preferred charity shop, The Shaw Trust, as they helped me try to get back to work years ago, wasn't taking any donations as they were full. The second, The British Heart Foundation (who funded my PhD) took some of the boxes. I'm glad we checked before hubby carried them to the shop as parking is a bitch and they didn't want everything. We ended up just picking a random third charity shop (with no personal attachment) nearby just to get rid of the last few boxes.
No way is this going to the tip!

I couldn't believe how long it took to donate good 'stuff'. These shops are overloaded with good quality items but can't seem to shift them. I really thought that the charity shop stigma in the UK was dying but maybe I'm wrong. I've had the same problem trying to sell things online for next to nothing, like a great violin that Missy has outgrown (she now has a full size one). I can't even give things away! I still have the violin as I'm not taking a really good instrument to the tip! I'm sure I'll find a little boy or girl who would love to learn someday.

Here lies my problem. I can't in good faith throw away really good items but I struggle to give things away as well as no one seems to want secondhand. Our local Freecycle page doesn't have much on there either. I'm pretty sure there is a LOT of money's worth of unused 'stuff' in everyone's attics and garages, or maybe I should be looking for gems at the local tip if others just throw it away. Who knows? I obviously live in an area where people have to have brand new and look down on charity finds. It's so sad. I've found some great things in charity shops and some of Missy's favourite clothes are charity shop chic.

I've moaned about this a lot to my poor hubby. We agree that the answer is for us to simply stop buying. We are not saving this planet by spending more on crap we don't need and then can't rehome later. Consumerism is my pet hate these days. Missy is an eco-warrior so she's more than happy to go this route. As for hubby and I, think of the money we will save!

Back 9 years ago when my last marriage broke down, I had to rely on charity shops for things we needed. Missy had lots of clothes from there, not to mention her beloved books and toys. I also replaced broken furniture with secondhand. I still use most of it today and am more than happy with it. I do hope that people catch on, especially in an area that is known for poverty and is in fact, one of the highest poverty areas in Europe!

So please folks, don't look for the cheapest deals, just stop buying 'stuff'! 
If you NEED something, then look for secondhand or deals first. 

We can save money and save the planet one secondhand item at a time. Missy and her generation would be very grateful.
*Steps down from soapbox!*


Monday 18 February 2019

Being sick is expensive

Yes, being sick is very expensive. This goes way beyond not being able to work any more and the loss of a professional income. There are also many more, direct and indirect ways that being sick is expensive.

The obvious expenses, apart from the loss of my career, are things like the cost of medications and mobility aids. I've taken a lot of over the counter medications over the last 12 years as well as NHS prescribed ones. These costs may seem small on an individual basis but added up over a year, or decades it can get pretty darn expensive. What's worse is that often they don't work quite as you hoped.
My necessary poison

Sadly, I've often found myself in a position where I absolutely need a certain medication (like my anti-TNF injections that slow my immune system that is hell-bent on destroying me) but the side effects are so severe that I end up taking more medication to keep the side effects (hopefully) under control. And then these medications also have side effects and the vicious cycle quickly gets out of control. This is why I opt to take as little as I can get away from. Hubby and I have a little game we call 'Symptom or side effect', said in the voice over voice from a game show.

With regard to prescription medications, I am grateful that we have the NHS for many of these, even if the more expensive ones are not available to us. I don't have to worry about not having insurance because I can't work. That said, I wish I could get insurance as the NHS is stretched beyond breaking point and I can't see a Dr when needed, or get an ambulance when needed. Waiting lists also run into several years. It's a double-edged sword.

This leads me to another expense. I'm not able to get insurance for anything pre-existing and as any future problems can be assumed to be linked to my autoimmune disease I'm also unlikely to get help for unrelated things as well. Insurance companies find any reason not to pay out. So I'm not insurable.

Without private medical in the UK we are at the mercy of exceptionally long waiting lists, not able to choose the right Drs for our cases (as it's really, really hard to get referred outside your health board) and frequently we get sicker while on these waiting lists. The very unlucky can die before being seen.

As a result, with chronic illness, we are often faced with the expensive out-of-pocket costs of going privately so that we don't risk getting worse while on waiting lists. I've been on several for so many years that I've lost count. I have a LOT of different consultants, as no discipline overseas autoimmune in the UK, so this gets very expensive when it costs about £300 per visit per consultant, and that's before any tests or medications.

I'm saddened once again today as a friend of mine is having to pay privately for an urgent operation that she needs as the waiting list is over 2 years on the NHS. Her consultant asked if it was something she could do as she couldn't wait that long. This is awful. What if she didn't have life savings? Many don't.

I have to mix up what I can using the NHS and the private sector, both for myself and for Missy. The sad thing with autoimmune diseases is that there are no cures, just management if you're lucky. So we are stuck in this endless cycle of reduced income and increased costs for the rest of our lives. Even if we go privately we often don't get any help. For instance, I've seen 6 different neurologists over the last 10 years, some on the NHS, some privately. Only now have I found a Dr who is willing to actually try to uncover what the problems are. All too often, despite paying privately, we get fobbed off as our cases are difficult and require more investigation. This is why I stop and think really long and hard before paying to go privately. Often it's for nothing but we can't risk that this might be the right Dr and we don't see them. It feels like Russian roulette with very high stakes indeed. Moreso, when the stakes are your own daughter's health and wellbeing.

Over the last 10 years, I've had the added expenses of buying mobility aids when I've needed them. I started with walking sticks, then a walker, a wheelchair and now also have a scooter. I did manage to find my walker and scooter second hand thankfully. I wouldn't have been able to afford the scooter new at the time so that was a bit of luck.

These, however, are not the most expensive things. I've also had to rejig my house. I've got grab handles, extra stair rails, a shower seat, steps and so on. I've also paid to have walls knocked down and door thresholds lowered (with the doors needing to be replaced) and a low-level breakfast bar installed to allow me to be able to use the wheelchair indoors as well. I spent a long year living in the wheelchair but I usually have to rely on it for at least a few months a year when my condition flares out of control.
My second-hand scooter allows me to enjoy
the outdoors more often.

As a wheelchair and scooter user, I also need a car that is able to accommodate them. Thankfully, I can use the Motability scheme to lease a suitable car. The downside though is that I am forced to upgrade to a new car every 3 years and pay another big deposit on top of the lease. I will have to find a better option to this at some point but it did allow me to get a car suitable to my needs when money was too tight to afford one. Often, people think that Motability cars are given to us free but that really isn't the case. I have to pay a deposit for the car (usually upwards of £1000 for a wheelchair friendly one) and about £260 per month for the lease. This is also before any adaptions are paid for.

So far, I've only really discussed the costs of supplementing our NHS and mobility costs. There are more. These are perhaps more difficult for others to see. I have a LOT of chemical sensitivities, both in my food and environment. Missy and I have lots of food allergies and sensitivities so we are buying food we can tolerate rather than afford. We simply don't have the range of choice that healthy folk do. We have to read the ingredient list on Every. Single. Item. As you can imagine, shopping can take us quite some time, especially when hubby forgets his reading glasses! We also have to check the same items every time as ingredients are changed on an astonishingly frequent basis. We found out the hard way many times.

Food, to a point, can be controlled quite well despite it being more expensive. However, my environment is an ongoing and demoralising battle. I am very sensitive to chemicals in 'fragrances'. I get very sick (chemical induced meningitis and severe fibromyalgia flares) if I'm exposed to perfumes, aftershaves, laundry products, cleaning fluids, air fresheners, scented candles, cigarette smoke and so on. The list is endless, but I think you get the point.

In my home, I have some, but not total, control. I make my own laundry products and cleaning fluids. No one is allowed to wear perfumes or bring scented products into the house. So I can reduce my exposure. What I can't do is eliminate it.

Visitors often make me sick by accident. They can be very good and not wear perfume or hair spray that day, which really helps. But it goes much deeper. I often react to the scents coming off their clothes from laundry products, or maybe they have been to the shops where scents from air fresheners or other's perfumes have stuck to their clothes. I can't go near anyone who smokes. We all know how awful smokers smell even if their personal hygiene is really good. Sometimes, I can get away with a mild attack so long as I sit across the room with windows open. In winter when it's too cold to have all the windows open it gets very lonely as I can't invite certain friends or family around until the weather warms.
Enjoying the fresh outdoors. I'm pretty sure there
 was a book in my hands too.

This winter, I've tried hard to figure this out and have found that an air purifier is very helpful. I have this one. I'm actually considering getting a second one for upstairs too. They are not cheap but are worth every penny to me. Mine isn't a high priced air purifier (as the costs can go into several hundred and beyond) but it does a good job at cleaning the air for me in my living room, where guests usually sit. The downside is the expense. It's not simply the upfront costs but also the costs of replacing the filters every 6 months. I'm hoping I can source cheaper ones but either way, I find that I have felt so much better and reduced the number of attacks I have so much (by about 80% at a guess) that I am willing to pay.

The air purifier only helps at home though. Maybe if it was still the 80s I could carry one around on my shoulder in place of a boombox, but it's not. Public places are very scary to me. The more people around me, the greater the chance of getting sick. I cannot control what anyone else chooses to do. I'm still grappling with this problem. So far, all I've come up with is to wear a face mask in public places (such as hospitals and GPs, shops, or anywhere there are people). I've found some really efficient masks, in pretty colours 'cause that's important! However, like the air purifier, I have to change the filters in the masks after about 12 hours of wear. I still have the ongoing costs of replacement carbon filters. So far, I only know of one place to get replacement filters so I can't opt for the cheapest... yet. I'm still looking.

I'm pretty sure that there are many more examples of how expensive it is to be sick in just my case, let alone for others who also have this burden. I've had no choice since being sick but to find other ways to trim spending in my life to cover the loss of income and the addition costs of sickness. Over the last decade, I've got pretty good at it too. I'll write about my savings over time.
Dreaming of a rural life

I'm very thankful to have a hubby who sees how important it is to save elsewhere to cover these additional costs, so we don't have any arguments over money. We have opted for a more fiscally savvy life so that we have the money to spend on the truly important things, like health and wellbeing, along with such things as travelling, sailing and financial freedom. We look at every expense now and determine what value it offers to our lives. On closer inspection, I'm happy to say that many things have been dropped from our routine spending as unnecessary.

For now, my search for savings continues as well as my search for cheaper (but suitable) alternatives to fulfil our needs. I am on a mission to a healthier, happier lifestyle.

Monday 11 February 2019

Simplifying Valentine's day

Hubby and I have decided that we are not going to celebrate Valentine's Day this year, or maybe ever again. Why? Well, putting it bluntly, we don't need to.

This weekend hubby and I will do the same thing as every weekend. No, not plan to take over the world! We will plan a nice meal to cook together and eat together as a family. Actually, Missy won't be here this weekend so it'll be just the two of us. We will likely go out somewhere for a drive or a walk together (weather and health pending that day) and we like to bake a cake together. Later we will curl up on the sofa with the lights low and watch a movie, or maybe play a board game. It is winter after all.
All the family together on our Honeymoon

Sounds cosy right? And it is. Hubby even put up fairy lights for me to make it more cosy for winter. The big thing here is that we do this most weekends (and often in the week) so we don't need a special day. Every day is special for us.

I am very lucky to have a wonderfully caring and romantic hubby. He does very unromantically romantic things for me (as I do for him). He looks after my needs without me having to ask, often before I even know I have them. He brings me a cup of tea in the mornings because he knows it's the most difficult time of day for me. He takes over the cooking when he can see I'm tired. He might need instructions on how to finish whatever random dish I've concocted but I'm sat down with a cuppa while he does the work. If he's having a tough day in work I will try to make one of his favourite dishes for dinner for when he gets home. Nothing soothes him like a homecooked meal, a maybe a glass of wine or two.
The way to my man's heart.
Look at that face!

We tell each other every day that we love each other. We also tell Missy every day. We don't say it to hear it back or to use as a tool, but just because we want the other person to know. We will quietly hold each others' hands anytime, anywhere, just to re-enforce that we are here for each other. We cwtch (hug) often without needing to say a word. We will sometimes text the other in the day just to say that we miss them. We are very tactile as a couple and I love it.

These little actions speak far louder than a card and a bunch of store bought flowers one day a year. I hate the feeling of obligation that we must buy something just because society sees it as the thing to do. Really, it's another heavily marketed day, like Mother's Day, Father's Day, *insert random occasion* Day just for businesses to try to prise money from us.

Here's the thing though, love and contentment can't be bought but they are free to give. These are things that build over time together when you do the little things for each other. Hubby offering me (or vice versa) his last sweet means so much more than a gift on a day that has been constructed on feelings of guilt if you don't go along with the crowd. The little things that we do, but don't have to do, for each other every day are the true expressions of love.
Family meal time after cooking together

For years I've been trying to cut down on our consumerism. It's slowly drowning me in stuff and it most certainly does not bring happiness, just more stress over where to keep things that you probably don't even want. I simply don't need or want any more stuff. Material possessions have never meant much to me so they are not special to me.

The best gift for me this Valentine's Day is to not buy (see what I did there!) into it but to look for the special things in every day instead. Not to mention that the money saved can go towards things that are important to us, like our family holiday or experiences together. In years to come, I will remember our trips to France together or the shows that we went to see together, but I won't remember each individual bunch of roses I might receive. Hubby is my Valentine every day and I love him for it.

Thursday 7 February 2019

Homemade laundry detergent saves loads

Laundry detergent, it is soo expensive! I mean, even the store own brands are a lot. But do we really need them? I say no.

Actually, they are extremely bad for my health with all the chemicals and fragrances in them. I've had a problem with some detergents ever since I've been doing my own laundry (a long time now as I'm no spring chicken anymore). The big brands are worse than the cheaper ones too. 

I never really knew why they got to me so much until in recent years when my chemical sensitivities got more and more severe. Now I know it's the hundreds of different chemicals used to produce various "fragrances". So while I'm talking about the undisclosed ingredients in these fragrances, let me ask you, what does clean actually smell like? It smells of nothing. Mind blown!!

As a side note, look up the documentary on Netflix called 'Stink'. A single dad investigates into why his daughter's Christmas pyjamas smell so strongly of chemicals when she opened her gift. It opened up a whole world of toxic chemicals that we don't even know are in our lives and are not regulated for. Scary, scary stuff. 

We have become to think over the last 50 plus years that everything has to smell fragranced to be clean. A great example is with the use of bleach in hospitals. A massive bugbear of mine. You only need the smallest amount of bleach to do the job of sterilising as it's extremely potent. You shouldn't be able to smell it after the area has been cleaned and is dry. So what is that hospital smell that we are all familiar with? Chemicals in cleaning fluids, that's what. It's a dangerous place for me to be as it makes me sicker.

I'm pretty sure that we, as a society, use too much of these cleaning fluids because we think that these fragrances/chemical smells mean that something is clean. But really, if you spray body spray on top of dirty skin, the skin is still dirty! Teenagers, I'm looking at you!

For the past 2 or 3 years, I've been making my own laundry detergent. Ok, I do have a cheap brand (that I'm not reactive to) as a backup plan in the cupboard but I've never needed it unless I've been too lazy to make another batch of mine.

I looked on Pinterest (a wonderful place) to find various recipes and there were several to chose from. I settled on a liquid recipe and over the last few years have tweaked it to suit me. I've made what I think is my best ever batch, by accident, this weekend.

Please note that there are a few affiliate links in this post that will earn me commission at no extra cost to you if used. Thank you.

All you need are soda crystals, borax substitute, liquid Castille soap (I like Dr Bronners almond scented as it smells subtle and doesn't irritate me, but there are cheaper unfragranced brands too) and water. I use a large stock pot on the stove to make it in.

  • To make it, add 5 cups of water to the pot and add 1 cup of Castille soap. Warm it on the stove until it starts to gently bubble then turn off the heat. 
  • Add 1 cup of borax substitute and 1 cup of soda crystals to the pot. Stir until all the solids are dissolved. It took me a while this time as my borax substitute had gone a bit hard, but it still worked fine. You will feel this bottom of the pot turn from a sandy texture to a smooth slimy texture as you stir. 
  • When everything is dissolved, add 5 cups of cold water to the pot and mix well. 
  • At this point, I leave the mix to cool in the pot while I go off and do something else. 
  • Once cooled you will find that the soap tends to separate out into layers. I used to whisk it by hand to mix it up again but I found a little bit of magic this weekend all because I have a very painful arthritic shoulder. So rather than struggle with a whisk, I got out my electric hand blender. I thought I was being lazy but wow! What a great pearl of wisdom this turned out to be. The mix turned into a smooth set custard-like consistency. It was awesome and so easy. 
  • Finally, spoon your laundry custard into large jars until use.
  • When I use it in the washing machine I only need 1 tablespoon measure (from the measuring spoon set) or 1/2 tablespoon for a half load. 

A batch of homemade laundry custard detergent 

My first attempt years ago was like a thick sauce but my others were a bit more runny. I thought it was due to the storage temperature in my laundry room being colder but maybe I just wasn't beating the mix enough. The other major difference is that I now use liquid soap as I find grating a bar of soap hard work (again, thank you arthritis) and then I get bored waiting for it to dissolve in the warm water. So laziness (or self-preservation from pain) meant I switched to liquid soap and I much prefer the results.

I bought the ingredients for less than £19 (unless I upgrade to Dr Bronners soap which is more expensive). I only used half the borax substitute, about a 1/4 of the soda crystals and a 1/4 the bottle of Castille soap so there is plenty left over for another 3 batches is you buy a second borax substitute. I don't know how many loads I washed (as I don't count) but one batch lasted my family of 3 a full year. I even give a small jar to my mum.

My approximation of cost is £23 (with the extra box of borax substitute) for 4 years worth of laundry detergent for my family. That's less than £6 per year!!

I've had to look up the cost of Bold laundry pods (25 pods) as I haven't bought any for so long. I was shocked to see it is on Amazon for £20! That would last about 1 month. With these calculations, it would cost £240 per year for Bold compared to my £6 per year by making my own laundry detergent that works just as well. A saving of £234 per year to go in our early retirement pot!!

So making my own detergent not only helps keep me well (my main motivation for doing this) by avoiding unnecessary chemicals, but it's also very eco-friendly (especially if you use a bar of soap that is wrapped in paper rather than plastic). Then, of course, it's so much cheaper that you have to wonder why we pay so much to have it made for us with all those nasty chemicals added.

I seriously recommend you give it a go sometime. It took less than 30 minutes in all (with cooling time in the middle). That's a very good monetary return on your time.


Tuesday 5 February 2019

Soul searching

I've done a lot of soul searching in the last year, especially over the winter while being indoors a lot more. I've talked poor hubby to death about what we ultimately want to do in life and how to get there. Thankfully, we do agree on a lot of things but not always how to get there.

The older (and sicker) I've got, I've realised just how much I hate modern Western society. I simply don't fit into it anymore. Not that I'm too sad by that. Over the last decade my life has changed so dramatically starting with the loss of my health and quickly followed by loss of career then my marriage (that turned out to be a blessing in disguise for all concerned).

I remarried nearly 5 years ago and it's been wonderful. I've found someone who truly shares my values and we have found a big overlap in our ambitions as well. It turns out that these are things that are vital to a successful marriage but what do you know when you're in your 20s! Also, my priorities in life have changed a LOT since my 20s. I'm not the same person. I'd like to think I'm a better person but it's always a work in progress.
Sunset in the South of France, just before the bats came out.

Back to modern society, it simply doesn't have a place for me any more. I'm not in the rat race career wise as I was medically retired (against my wishes) about 10 years ago. However, I'm still stuck with the rat race indirectly through hubby. As I'm not well enough to work it is his sole responsibility to work and earn an income. We are still stuck, for now.

I have always to some extent hated the consumerism and materialism of our society. It became my norm when with my ex as he's fully into it, whereas I've always been a natural saver. When I became a single parent it probably wasn't as hard for me to penny pinch as I have that tendency anyway. I still had a lot to learn though, and despite our expenses being very tightly controlled there is still a lot more we could do. That's could, not should! (I'm trying to ban the word 'should') It's simply about priorities.

Over the years I have noticed that our society is completely geared towards wasting money and going into debt over it. Apart from my mortgage debts and a student loan that was paid off nearly 20 years ago I've only ever been in debt through my divorce. Those things will cripple you folks! Since then, I've clawed my way back, even without being able to work in an employed sense, mainly by avoiding spending money. Just because it's reduced, doesn't mean you need it!

So we are stuck in a rat race trying to earn enough to satisfy our societal urges to spend on stuff we don't need, and often don't even want! I mean, how ridiculous!

What I crave now can't be bought with money. I want simplicity, wholesome fun, to be surrounded by nature and trees. I luurve trees by the way! I can't breathe (literally) when stuck in a concrete jungle commonly known as a city. Most of all, I want to share it all with hubby.
The coastline of West Wales

Hubby and I long to retire to the countryside of France, or West Wales if my health causes too much problem abroad. I like having a plan B for days when I struggle to see France actually happening for us, especially with the uncertainties of Brexit. But I'm not going to get into politics.

I have a need to be surrounded by trees and countryside but hubby, on the other hand, is a sailor and needs to be near to the sea. Parts of France simply can't accommodate both of these dreams so we've been focusing on exploring the areas inland but in an hours drive of the sea. We go to France each year and 'test' out a new area. We drive around lots to get a feel for how accessible places are to each other in the hope of finding that sweet spot.
A short drive from our current house on the outskirts of the city, SE Wales

Our plan B in West Wales is, in fact, much easier as there are beautiful countryside and woodlands in West Wales and you are never far from the coast. What we want is to live in the countryside/woods but have easy access to the coast for sailing during the summertime. I don't fancy being coastal during the winter months when we would be battered by all the Atlantic winds and storms.

The other part of the dream is to retire to our rural retreat sooner rather than later. My life expectancy isn't as good with my problems and as I get sicker each year time is an important consideration. So long as we are dependent on hubby's job we can't move anywhere better for my health. So we have been looking at how we can generate passive income and reduce our needs enough that the two can allow hubby to retire early.

This is not exactly the start of my journey but somehow it is a new chapter. I've walked away from my old life, accepted that I'll never work again and importantly I've got out of debt from the divorce (as has hubby following his divorce). Instead of fixing past mistakes, I now feel like we can plan for a better future, so it is a new chapter for me.

Monday 4 February 2019

Chemical's all around me (sung as Love is All Around Me)

This post contains an affiliate link from which I can earn a small commission at no extra cost to the buyer.

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.

Enjoying the clean air in the woodland

Friday 1 February 2019

Snow day, I feel like a fraud

We have been forecast snow for a few days but it only actually materialised last night. It was snowing gently all night long and this morning we have a lovely winter wonderland scene outside.
Just before the sun came up before the kids ruined the clean snow!

So the first thing to do in the UK is check your email to see if your kid's schools are closed. Yes, they have been shut.

A lot of people complain about the schools closing at the first sighting of a snowflake and to be fair we are a nation of babies in this respect. We had a total of about 3 inches snow overnight and now it's stopped.

Trying to figure out if they have enough snow for an igloo
As a country, we are always woefully underprepared for any bad weather, snow, flooding, drought, whatever. We seem to be reactive rather than proactive. Partly, I think because we don't really suffer from bad weather in the way that many other countries do. We often don't have any snow for instance. This is why many drivers haven't got a clue how to drive in snow. They've never had to. So keeping these drivers off the road isn't a bad thing.

There is an upside to a snow day though. The kids don't see snow that often so it's nice for them to have some wholesome fun in it while they can. It'll likely be slush and ice tomorrow. It's been lovely seeing and hearing all the kids playing outside in the snow. It' seems that snow has the power to get them to put down their phones for a while and get outdoors. That can't be a bad thing.

I've got kids running indoors every couple of hours for a hot drink, a quick pee and a chance to warm up before they bundle up and run back out again. It warms my heart.

Little Sammy and Cecily eating their fill
I do feel a bit like I'm missing out as I'm not out there myself. I have to be very careful not to fall and get too cold thanks to various chronic illnesses. If Matt was home I would be more inclined to go out for a walk in it during daylight as it is so pretty and my camera finger is twitching. Maybe there'll be some on the weekend when he's off work.

Yes, that's right, Matt has done his usual commute to work this morning despite the snow. He doesn't want to get behind or lose a days holiday. That and he can easily get there taking a bit of care on the roads.

Many of the local buses weren't running this morning, or they were running limited routes. This is usually why I think the schools close. These days most children are bused to school as over a generation the smaller schools have been closed in favour of busing kids to a super school. There are over 1800 children in Missy's school and they are still talking about expanding!! There were about 550 in mine 30 years earlier. So the schools are then at the mercy of buses running as the children (and staff) don't live close enough to walk. At least it doesn't happen too many days each year.

No wildlife out today
I've also been looking after my little furry friends during this cold snap. I topped up the feeders for the birds and squirrels a few days ago so they've been well fed before the ground froze and now they can cosy up together in their nests and wait it out.

You can see a quick snap I took of two squirrels getting their share of seeds and suet. These two often come over together as the little one, Sammy I call her, is still quite timid.

This morning though I haven't seen any wildlife out. Even our Suki cat doesn't want to go out for a pee. Missy has managed to coax him out the front where the car was and it's clear. He was out for 5 minutes and is now asleep on the back of the sofa where I've no doubt he'll stay.

I think it's time now that I make a big batch of pancakes to warm everyone up. I'd better go easy on the milk though!




A new chapter, my epiphany moment


I can't believe I'm starting yet another blog. I stopped writing a couple of years ago as I got fed up with putting stupid expectations on myself with it all. That said, I have missed writing about my random thoughts and having a journal to look back on.

Last year was a big challenge mentally for me and I couldn't bring myself to write anything as I was afraid of focusing on the bad things. Journalling during these times isn't good for my health. However, something has changed in me in recent months and I'm feeling hopeful again and my yearning for a more simple life has increased tenfold.

I had a lightbulb moment while chatting with a good friend in France last summer. I have many complicated medical problems that I find overwhelming most the time, but for some reason, I noticed that every year while I'm in France on holiday for two weeks I feel a lot better and can cope better with day to day living. As soon as I get back to the UK I go downhill again within a few days. It's happened every time I've been to France over the last 4 years.

So chatting with my good friend (and Tribe member), we tried to figure out what was different. Ok, the warm summer sun helps a lot but we had an amazing summer in the UK last year as well, so that wasn't it. The fresh open spaces in rural France were amazing but even though I live in the suburbs at home I wouldn't say I lived in a built-up area. In fact, we have lovely trees and wildlife opposite our house as we are on the edge of the estate.

I don't have the pressures of a job at home, as I've been medically retired for about 10 years now, so that wasn't the difference. Ok, I do find things easier when I have Matt home from work to help with things I find difficult, but not to this extent. Something was clearly different in France.

I noticed in France that a LOT of the food out there has No Preservatives stamped proudly on it. I asked my friend about it and she confirmed that the French are really against their food being tampered with. I have numerous serious sensitivities to foods and solvents thanks to fibromyalgia/ME so I started to look more carefully at what we had been eating in France.

Most of what we ate there were fresh fruit and veg, Shaar gluten free bread (that I can get at home) and good quality meats. Our diet was quite different. And yes, we loved moules and I also am quite fond of snails. We were eating a lot cleaner.
Missy showing me how to use a mussel shell to pick out the flesh. We love les moules frites.

I hadn't thought about all the additives in our food at home. I know I can't eat gluten, wheat, pulses, or anything onion family along with a few vegetables that, erm, produce wind. Not to mention, no alcohol! But I hadn't looked at the E numbers in any great detail. Oh my goodness, our food is chocked full of them. And to think I thought that we ate fairly well as most of our food is home cooked and we have lots of fruit and veg. 

With Matt's help, we paired our food right back to the basics. I don't buy processed foods at all any more for myself and very little for Matt and Missy. It took many weeks of cutting all these additives out of my diet as well as the many foods I had already cut out before I noticed any change. Then it was profound.

I have been getting severe headaches (meningitis type ones) 1-3 times a week for ten years. They last between 3 and 10 days and often I get one attack on top of another as they switch to the other side of my head. I was lucky if I had a small handful of days each month with less pain. I never had a pain free day.

This was such a profound discovery. I am now having more and more better days where I feel like me and not Mr Hyde. I even get some pain free days. Every weekend now Matt and I batch cook for the week and freeze a load of meals for days when I'm too sick to cook. I now choose to go without on my bad days rather than eat convenience food and get more sick. I would rather starve. Besides, I've got plenty of reserves to keep me going!

This was the turning point for me. Without constant attacks I actually feel like me, the person I like. During an attack I feel a personality switch, hence Mr Hyde. I was very depressed and anxious all the time. By avoiding triggers and eating clean I'm me more often and I can feel the depression lifting. The old adage of 'You are what you eat' couldn't have been made more obvious to me.

So I feel that a new chapter in my life is starting. One that's making me question a lot more about the way we live and how it's making us sick. I'm at the beginning of my journey but am so glad that I took the first steps.