The (social media) famine is over.

Lately I've been tempted back onto social media after a long break. It came about when I was looking for the forum on MCS-Aware but found it lacking. Sadly, forums seem to be dying as social media has taken over with the addition of groups.

I was really disappointed that the only way to find this community was on Facebook as social media really isn't good for my health. It should definitely come with a warning!

So, I reluctantly reinstalled facebook on my phone to take a look. There was some useful stuff in this group but actually not enough to keep me. By chance I found another group, Sustainable-ish, that spoke to me a lot more. There are a lot of overlaps between living sustainably and living a low toxin life as toxins are, more often than not, bad for the environment too.

The pretty colours of autumn. #simplepleasures

I have really enjoyed chatting with like minded folks and learning new tips for a more sustainable life. Even better, this group has a no judgement policy and acknowledges that everyone is somewhere different on their path to a better life. It's all about supporting each other. I've enjoyed the group so much that I'm now back on facebook, in a somewhat limited capacity.

I have been giving my social media accounts another overhaul. I seem to need to do this regularly. I have deleted toxic people and unfollowed two thirds of the groups and pages I had acquired over the years. I'm pretty sure I never even signed up to some of these!

I've oddly got into instagram a bit. Missy now has an account where she shares her art work and follows creative groups. Given her tender age I insisted that she had me on her account 'just in case'. This meant that I was periodically checking comments on her posts for potential bullying. So while I was there I cleaned up my account as well.

Again, about three quarters of all those I was following (years ago) were deleted. A lot of these for spouting too much toxic positivity. That's no good for mental health either.

Missy showed me that I could follow hashtags as well. I didn't know this as I hadn't logged in for many years and haven't seen how it's evolved. I actually quite like instagram now, dare I admit. My favourite hashtag is #simplepleasures.

Gorgeous blue sky through the trees. #simplepleasures

For a few years I've made a point of trying to spot the simple pleasures of life. I read it in a book in France 4 years ago and loved it. They call it something like, Le petit bonheur de jour, the little joy of the day. When you get in the habit of looking for one each day, you then find yourself seeing more and more of them without trying. It's true. It really works.

So in my guise of responsible parent (checking on Missy's account) I found myself posting these little joys of the day just for fun with the hashtag #simplepleasures. Now I also follow that hashtag and see lots of lovely things posted by others who are on a similar mission. This makes me smile to know that I'm not the only one trying to simplify and slow down. For the first time I think I've actually found a plus side to social media.

I now find myself snapping a pic of something that makes me smile during the day and sharing it. It was to share with Hubby and Missy at first but now I feel like there might be a community somewhere out there for me.

Calm reflections. #simplepleasures

I had given up on trying to find community online earlier in the year. I'm pleased that I have started to find some. This really shows me how I must take responsibility more for social media. Just because I know someone doesn't mean I have to follow them. In fact, on Instagram I hardly follow anyone, just hashtags.

Social media has been really hostile in the last 10 years since the 2008 crash. There's so much bitching and arguing compared to when it first launched. Or maybe I was just seeing more of it. So much fake news and sensationalised clickbait, it all just riled people up and made everyone turn nasty behind the protection of their computer screen.

I've unfollowed everything political and everyone who spreads rubbish without thinking. The result is that I'm seeing a better feed and no longer want to cry. I'm seeking out the nice groups and like minded people while deleting those who are toxic. Bit by bit, my social media anxiety is improving. I'm now able to share with true friends and family without being overrun with things I don't want to see.

I realise now that I needed to set boundaries. Now I have to stick to them.

My aim is to carry on looking for the simple pleasures and to share in the joy of those found by others. Oh, and to keep Missy safe online, of course!

Painting together. At least until the rain came! #simplepleasures

Hair without shampoo, 4 week update

It's now been about 4 weeks since I've used shampoo or conditioner on my hair so how am I finding it?

It's been a bit trial and error but I think I've finally settled on a system that works for me. I've had to adapt my first methods that I outlined here. I think it's been a bit trickier because I'm also trying to treat psoriasis on my scalp. 

Initially, I was using bentonite clay and apple cider vinegar (ACV) as a hair mask. I had read good things about this and after a patch test on my face (without psoriasis) I gave it a go. The patch test ended up being a full on face mask as I have to admit, my skin felt amazing afterwards. It was a little pink for about 10 minutes as the clay exfoliates as well but it didn't last long. I'm definitely keeping the face mask for when I need a bit of pampering. ;)

When I tried the clay on my hair as a mask I found it to be too difficult to do. It was messy and with long hair I wasn't able to get it onto my scalp very well. My hair tangled a LOT and that's not a good thing as my hair falls out exceptionally easily, and this was one of the things I was trying to avoid. It wasn't pleasant and I felt like a family of rats had made a home on my head. Yuck!

My next attempt at using bentonite clay was as a dry shampoo. This worked better overall. I applied a light dusting to the roots of my hair with a makeup brush (as my salt shaker kept blocking) before bed the night before I washed my hair. 

The dry shampoo method worked better as it kept the oils more under control. Then it occurred to me that dry shampoos were not going to let my skin naturally adapt to producing less oils in the long run if I kept on sucking them up with bentonite. Hmmm. Also, my scalp started to hurt after the bentonite had been washed out as it was too gritty for my injured skin to cope with. 

Hiding my greasy roots under a scarf.

For the first 2 weeks I took to hiding my scalp under my trusty head scarves again while I tried to figure this out. The length of my hair was fine as the ACV was doing a great job but the roots were looking (and feeling) pretty grotty. 

After some more research I decided to stop the bentonite treatment and instead I switched to washing my hair with about a teaspoon of sodium bicarbonate in half a cup of warm water. This is working far better for me. 

Bicarb has to be kept in an airtight container, especially in a damp bathroom, as it absorbs moisture from the air and turns to rock! I have a small tub in the bathroom, which I take a teaspoon from into a clean glass. I take this into the shower with me now and use the warm shower water to mix it up as I was a wimp with the cold water that ran down my back. Brrr. It's not summer any more! 

First I wet my hair, then pour the bicarb water slowly into my roots. I massage gently into my scalp to cleanse my damaged skin. It's far gentler than the bentonite clay but still a mild exfoliator. It's pretty darn good at getting the dead cells off that are caused (excessively) by psoriasis. I leave it on for a minute or two then rinse thoroughly with water as the next step is the ACV and you do NOT want to have bicarb and vinegar reacting together on your head! I doubt it would do any harm but I don't think I'd want to try it and risk it getting into my eyes. Ouch! 

Since the weather has got cooler I've also started to take concentrated ACV into the shower. I pour about 2 tablespoons of ACV into my glass and half fill it with the warm shower water so I dilute it in the shower now. Again, this is my wimp factor and not liking cold water going down my back. Such a wuss! It works for me. 

I haven't changed the ACV rinse as it's worked really well. I gently pour the diluted mix through my hair and massage it along the length of my hair to the tips. Don't get it in your eyes. That will hurt. If you do, rinse immediately with water. I stick my face under the shower head a bit quick. I only did it once! I then leave the ACV on my hair for about 3-5 minutes while I continue to wash my body. 

Incidentally, I have only used water to wash my body for several years as soaps were aggravating my skin. This is why I'm now ditching shampoo too. I can safely say that I don't smell without soap. I have repeatedly asked Hubby and Missy just to check! On hotter days in the summer I did on occasion spray a bit of diluted ACV under my arms to kill any bacteria that could cause the body odour smell. ACV doesn't smell once it's dry so simply hold your arms up for a minute for it to dry. ;) Now the weather has cooled I haven't needed to use anything and Hubby still says it's fine and I trust him. I actually sweat less since stopping deodorant.

Sweat only smells when it goes stale. I wash under my arms every morning with water alone and that's usually enough. Sometimes on hot days I might need to wash again by evening (or use a little vinegar in the morning to prevent it). Either way, my skin and body are happier because I'm not using chemicals that make me sick and no one has ever indicated, politely or otherwise, that I smell. I'm usually the first one to notice at which point I splash some water again. It's only noticeable when I'm not well as sweating is different then and a sign of illness. These days I'm stuck in bed anyway when sick so not offending anyone with my smell. I also have bigger things to worry about than a little bit of odour so I cut myself some slack on these days. 

About 2.5 weeks ago, I did use a bit of soap on my hair after spending all day and night in A&E after a chemical exposure (to air freshener) made me collapse in the doctor's office. When I got home I was long overdue treating my skin and the psoriasis was so bad that I was forced to use steroid creams on it. The next day I needed something a bit stronger to wash out the creams. I opted for Castille soap that it chemical free. A tiny amount was all I needed, then I rinsed again with ACV. This was my only blip. They happen. Since then I haven't used the steroid creams but it's good to know that this works for when I can't avoid them. 

So after 4 weeks I've learnt a lot. I now have a routine where I wash my hair every other day with bicarb and rinse with ACV. I tried to go longer between washes and just rinse with water in between but this simply isn't possible with psoriasis, at least until I can heal it. 

I'm happy with this routine. My skin is feeling a lot less irritated and is less scaly. My hair is clean and shiny. Moreover, I'm using far fewer plastic bottles than I did with shampoo and conditioner as I bulk buy the bicarb and ACV that last so much longer as such a small amount is needed each wash. And a great bonus is that it's costing me pennies now. (They are affiliate links.) I also use them both for other things like making cleaning products and cooking with. Don't worry, they are kept in the kitchen not the bathroom! :) 

Here's a pic of my hair as it is today. Also, I haven't washed it today so I'm pretty happy. 

4 weeks without shampoo and conditioner.
I need to smile more. I think I was concentrating!

Can I give up Christmas?

Isn't that a big question!

This is something that has bothered me for many years. Well, not specifically from a Save the World point of view until recent years, but it has bothered me by how wasteful Christmas is these days, both financially as well as in resources.

Let me start by saying that we are not Christians in this house. I was brought up Catholic but left the faith in my childhood. As a result, I have been brought up to celebrate Christmas, just like most people in the UK (Christian or not), and it is part of our culture. What it does mean is that we (and many in the UK) do not celebrate Christmas for the right reasons.

For decades I've wanted to stop celebrating Christmas as I feel like a hypocrite but that is not easy when it is so completely ingrained into society, especially our families. I feel trapped into Christmas through peer pressure. I know I'm not a spotty teenager any more but peer pressure is still very much in society even as we get older and should know better.

I honestly think that my family would be accepting (maybe not so much understanding) but this will definitely not fly with my in laws. The (annual) fights and emotional blackmail over Christmas have already started in that quarter!

I'm faced with this dilemma every year and still haven't found the right balance.

If it was exactly what I wanted it would be simple. Our household celebrates Yule on the 21st December. It is all about our little family. We have a luxury (for us) meal together and we each receive a book (pinched from the Icelandic Christmas Eve tradition) that we can snuggle up with in the evening with our fire on and a box of chocolates to share while we read together.

Our family is forming our own celebration based on our values. Yule makes sense to our beliefs and values. It is the longest night of the year and the next day we welcome the new solar year as the sun and longer days return to us.

Missy made a gluten free Yule log last year. I love it.

We draw a wheel (representing the last year) and we take it in turns to draw something that we are grateful for  around the circumference. I always feature books and last year one of mine was my Kindle (aka, my Precious!). This is a simple thing to do that makes us stop and think about what we already have in life and are thankful for. Incidentally, I love my Kindle so much that I cried when my last one broke after 7 years!

Last year we also wrote a letter to ourselves that we will read back this year to reflect on and hopefully see how far we've come in the last year. Then we will write a new one to ourselves for next year. This is our equivalent to New Year's resolutions in a way, but we celebrate the new Solar Year. We are moving back towards Pagan ways as they make a lot more sense to us.

As a family, we don't follow a religion. Instead, we have based our values around Mother Earth. We have been trying to become more and more sustainable each year as we wish to protect the Earth that we depend on. We all feel a connection to this Earth that sadly Hubby and I lost for many years while we were brainwashed into the rat race and the consumerism trap.

Through our daughter, who stills sees the Earth as a wonderful living being, we have woken up again. I have been sleepwalking through life for too many years. It took the wonder in my daughter's eyes to make me stop and look more closely again. I will always be grateful to her for that.

This brings me back to our dilemma. So far we do still celebrate Christmas as well because of peer pressure. We do exchange gifts on Christmas day but we are keeping things far more simple. We don't spend a fortune and we are perfectly happy (happier even) if something is found second hand (and saved from landfill).

The gifts we do buy for each other are well thought out and are things that we really, really want (but don't necessarily need). Missy will happily wait for birthdays and Christmas for something she's been eagerly waiting for. For instance, her phone died months ago and she waited until this month for her birthday. She made do with a broken, half working phone for about 3 months, which I'm very proud of her for. She asked for money from everyone this year to go towards her new phone and she's said that she's even more thrilled with it because she's had to wait and now really appreciates one that doesn't keep letting her down. I will also show her how to sell her old phone online for parts so that she also gets something back and avoids sending her phone to landfill.

About to start our Yule dinner

Don't get me wrong, I have no problem at all with buying (new or second hand) gifts when someone needs something or genuinely wants it and will use it. What I do hate is the duty to spend on things that are not needed or often wanted just because it's Christmas. It's a waste of resources to make that product, a waste of hard earned money, and often ends up in landfill (or a charity shop then landfill) soon after. It makes me shudder to think about it.

This feeling isn't new, it's been with me for a long time. I just didn't have the words to articulate how I felt for a long time. Something felt very wrong with Christmas. As a child we went to mass and celebrated the birth of Christ. Ok, I don't follow it now but I can respect that others do and that's the true meaning of CHRISTmas. All the commercialism to make money for profit that occurs is wrong to me. This is why Yule resonates so much better for me. We only gift one book each and the day is about celebrating what we already have, as well as looking forward to what we want to change in the coming year.

Yes, Christmas is a time for giving but we've got it all wrong. We need to give our time to connect with those who are around us. Give to those who need a little help. Charities are good if you don't know anyone in person who genuinely needs some help. It could be something as simple as inviting a friend or family member who lives alone to eat Christmas dinner with you. You are giving the gift of company. As someone who is largely housebound, the gift of company would be the best gift ever.

What I want to say is that giving doesn't need to involve money at all. In fact, using money is the easy way out and doesn't usually give what that person truly needs.

In the UK most people have enough money already. And I do mean enough for basic needs, not wants. We are a wealthy nation when compared to many others. Most people can buy their own material gifts whenever they want them (to a point).

What we are lacking is a sense of community. Isolation and loneliness are ever increasing and are in the news all the time these days. I know first hand. Depression is a big problem for many, especially in the darker months. Giving someone a novelty plastic gift doesn't do anything for the fundamental need for community and togetherness. It doesn't nurture the soul.

We keep our Yule decorations simple

Right now I feel trapped between my values and peer pressure. I still don't know how to address this as fundamentally I am a people pleaser and want to keep the peace. I think this Christmas is going to be a tough one. One family member has been banned from our house as they refuse to stop wearing perfumes around me and make me exceptionally sick. This is going to be the first Christmas when they are not allowed to come here and I can't go near them either. I end up in hospital! I really don't know how to deal with this. I'm not even sure why I feel so bad to be honest as this person has had everything explained to them countless times and continued to make me sick for a long time before I said enough.

I really want to give up Christmas and carry on with Yule. It's not easy to go against the grain though and my immediate family have to be on board too. That's a lot to ask. Missy isn't bothered about Christmas (oddly for a child) but Hubby is stuck between us and his extended family. It's hard for him.

Last year we really downplayed Christmas and kept it simple. We still saw everyone and exchanged gifts but our little household had already celebrated on Yule, which was fantastic. Christmas felt like the little brother in comparison. I expect this year will go a similar way, except that I can't see Hubby's family.

I'd love to know if others feel the same as I do and if anyone has any tips on how to get the balance better. I don't like upsetting people but I also don't like being the one who's upset. I think Hubby and I need to have another chat about this. I really hope he's got some ideas.

Can I give up shampoo?

Can I give up shampoo?

I'll bet that's not a question that's heard very often. So why do I want to give up shampoo?

For a long time now I've suffered with psoriasis. I've got all the lotions and potions from the doctor, many of which I react badly to. I can kind of keep on top of most of it but I really struggle with scalp psoriasis. It's hard to get at, unsightly, and worst of all down right painful.

I've been working out in recent years what the triggers are for my autoimmune problems (psoriasis is autoimmune) and in the last year it's become painfully (literally) obvious that chemicals are not my friends.

So far, I've switched to making my own laundry products, soap, cleaning fluids and some hygiene products. Each move has eased my flares a bit, so long as I live in a bubble to avoid chemicals on others. What I've failed to make is shampoo. I've tried various recipes and shampoo bars (ouch!) but nothing has been a success so I've gone back to the one brand of shampoo that I could sort of tolerate. I mean, who really wants to be a greasy, smelly mess? I definitely don't.

One of my headscarves

It has been obvious over the years that the psoriasis on my scalp is far, far worse than anywhere else on my body. I've always thought that this was because it is so hard to get at the skin under my hair. Two years ago I cut off my long hair so that I could get at my scalp better but that didn't help. In fact, it made me feel even more miserable as everyone could now see just how bad my skin looked. It was painful to touch and bled all the time, not to mention the bald patches where my hair had fallen out. I resorted to wearing head scarves out of embarrassment and also to try to stop me from scratching so much.

Last week it occurred to me that with my intolerance to scents and perfumes, that maybe the shampoo itself was why my scalp is always so bad. I don't use scented products to wash anywhere else but have you ever seen a fragrance/perfume free shampoo? I haven't. This is why I tried to make my own.

I took to the internet to do yet more research. I found a few no shampoo methods. It pretty much means training your hair and scalp to adapt to washing with plain water. It's pretty gross for a few months, but I still have the head scarves. It gets itchy as well. This could be a problem as I already struggle with this and I'm driven to almost ripping my skin off as the itching gets so bad.

So figured, why not give it a go? I'm mostly housebound anyway and can't have visitors so who's going to see me other than Hubby and Missy?

I've just washed my hair with shampoo (I know, but bare with me). I wanted to first wash out all the prescription products on my scalp and hair as I'm going to stop them as well. It's not like they have worked anyway and they are even more harsh than shampoo!

I didn't use conditioner today. I usually have to condition as my hair tangles without it and causes me to accidentally pull out a lot of hair when brushing. Really, it doesn't matter how careful I am, my hair is extremely brittle from harsh prescription potions. Just ask Hubby how much hair is in the drain in the shower!

Instead, I've rinsed my hair with apple cider vinegar. It's an old school way of conditioning hair that our grannies would have known about. I massaged it through my hair and scalp and left it on for about 5 minutes before rinsing it out with water.

I am very pleasantly surprised how well it detangled my hair. Better than any conditioner I've used! It was so much easier to comb out after. It's air drying as I type. I hope it's not a complete mess when dry!

In place of shampoo, I intend to use mostly plain water although I'm going to try a hair mask made from bentonite clay once or twice a week in the hope that it will help my skin to heal. (Affiliate link) I'm not sure how often it will be needed yet and I haven't done my patch test yet to know if I can use it. I'll have to report back. Then I intend to rinse with apple cider vinegar to remove all residues like I did today.

I was careful choosing the type of vinegar. I already use white vinegar for rinsing laundry and as a rinse aid in the dishwasher where it works very well. However, for my skin I've gone with cold-pressed apple cider vinegar with mother (all the good microbes). (Affiliate link) This is recommended for its health benefits for so many conditions, including autoimmune and dandruff (if used on your scalp). It seemed like a good choice. I have bought food grade so I will also use it in the kitchen. I didn't realise that the supermarket-bought apple cider vinegar I had didn't contain the mother (microbes) so it would be nice if it also helped calm my gut (as recommended in numerous places) by using it in my food instead of the supermarket bought ones.

This is a complete experiment and I have no idea how it will work for me. I am prepared for it to be horrible for a while in the hope that firstly, the scalp psoriasis will calm down without the chemicals in shampoo on it everyday, and secondly, that my natural oils will adapt over time to not needing shampoo that strips them out of your hair.

Think about it, how many years have humans lived quite happily without all these products? I'm pretty sure my cat doesn't need shampoo and conditioner. His fur is stunningly soft and always meticulously clean. Besides, have you ever tried to bath a cat!!

Suki doesn't need Vidal Sassoon. He's purr-fect!

Edit: Here's my 4 week progress update if you are interested in what I've learnt. Enjoy!

A possible cure? And an emotional roller coaster.

I haven't blogged in months as I've been trying to get my head and emotions around a fairly recent neurology consultation. Apparently, I might have a chance of being cured. Yes, you read that right! Or at least get back to a better place than I am right now. It's been a lot to get my head around and until now I haven't really got my thoughts together, hence the long break from writing.

A few months back I pushed to see my neurologist again as I was long overdue my follow up and things had got much worse as I wrote about earlier in the year. After several phone calls, I eventually got a date for a review two months later. How I miss the efficiency of US healthcare, even if I did need insurance!

I had an awful 3 hour wait in the waiting room while having to wear a face mask to protect me from the perfumes of others, and during a heatwave! The masks however, weren't enough as they kept getting saturated and needing a new one until I ran out of them.

My symptoms became more and more apparent to others, as well as the ones that I can hide to a point. By the time I saw the Dr I was barely able to walk or speak, and couldn't control my left arm that kept jumping. The pain in my head was becoming blinding. The Dr saw first hand what the start of an attack looks like, even though I'd done my best to protect myself with masks and moving as far from people as was possible. It took me over a week to recover from this attack.

We updated her on what was going on and described how the chemical intolerances were getting worse and had me living in a bubble at home. I told her that all my autoimmune symptoms were worse when I was exposed to one of my numerous triggers, meaning that ALL my 5 autoimmune conditions flared AT THE SAME TIME. She agreed that really I only have one condition, Autoimmune Disease, and that splitting them all up into different specialists depending on a sub-set of symptoms really wasn't working. I need a holistic approach.

Coupled to that, I now react to many, many drugs given by each separate consultant, I was running out of options. In fact, I thought that I had run out of options. I've come off all medication as a result, except my morphine patch that I can thankfully tolerate for now.

Then this lovely Dr, who takes the time to look at me holistically, pulls not one but two options out of the bag for me!

Option 1, Plasmaphoresis

The first option isn't a cure but can help to manage the condition. It's blood plasmaphoresis. It's similar to dialysis where it would pass my blood through a set of filters to filter out the toxins that my body can't cope with and filter out any antibodies (as well as platelets) circulating in my blood.

Plasmaphoresis is carried out in a series of treatments, 2-3 times a week for 2 weeks. The hope is that I can manage symptoms for a while before environmental toxins and food triggers cause me to produce more auto-antibodies. At this point, I would need another round of treatment.

Plasmaphoresis is a management not a cure. It's like being on kidney dialysis (management) while waiting for a kidney transplant (potential cure).

The other concern for me with plasmaphoresis, is that I already have very low platelet numbers as my immune system destroys them within hours. I need to ask what extra risk this would pose as I don't have any platelets to spare and my blood doesn't clot very well as it is.

So what's the second option?

Option 2, Autologous Stem Cell Transplant

The second option is an autologous (my own) stem cell transplantation. 

This is very much like the treatment for leukaemia. The main difference is that I don't need to find a stem cell donor as my own stem cells would be harvested and cleaned for transplantation later. 

This option is, to me, the scarier one. I'm severely chemically intolerant and this treatment has not one but two chemotherapy stages from what I've read. 

I will need to have chemo to stimulate the release of stem cells into my blood so that they can be harvested with a blood donation. 

Once the stem cells are harvested, I would then need intensive chemo to destroy my immune system as it's my immune system that attacks me (instead of cancer attacking me). 

After the immune system is destroyed my stem cells can be transplanted back into me in order to reboot my immune system and start over again. This is my chance at a cure. 

So far I haven't discussed this in detail with a Dr as my neuro isn't able to prescribe this course of action. My rheumatologist however could. Sadly, I am between rheumys after mine had enough and quit the NHS a year ago. I'm looking for a new one but am stuck in a very long waiting list again. 

My worries about the stem cell transplant are mainly around the chemotherapy. I can't even tolerate IV antibiotics or a local anaesthetic at the dentist. Understandably, I'm really worried about high dose chemo. 

What I want to know is; 1) Can I have my stem cells harvested from my bone marrow instead? I've had a bone marrow biopsy and I know how painful that was so I can only assume this will be worse, but potentially worth it. 

2) Can my immune system then be destroyed with radiotherapy instead of chemotherapy? I feel that I would better tolerate this. 

The other worry I have is that I would have to be an in patient for 1-2 months according to the NHS website, as I would have no immune system and be at high risk of infection and complications. During this time I would be reliant on being looked after by staff who do not know me. I cannot have anyone with perfume or scents near me, I can't tolerate cleaning fluids used in hospitals and also I have so many food triggers that last time I was in hospital for a week (6 years ago when I wasn't as bad) I was fed gluten free apple crumble and custard twice a day every day as they didn't do anything else suitable. I'm seriously afraid that I will be forced to eat dangerous foods as I can't live on crumble and custard for 1-2 months. Then again, maybe without an immune system I will be able to eat more foods. Who knows?

Of course, so far I haven't actually found a consultant who can prescribe treatment for me. My neuro is looking for someone who can help but waiting lists are really long. I've already waited 10 years since my accident with blood products started all this. 

My emotions are all over the place. I've been given a glimmer of hope but it's still a very long way off, if it's even possible at all. I'm afraid to get my hopes up as I've become used to disappointment but this is also the only real hope I've been given in a decade. 

I'm so glad that we have been financially sensible for years and got out of debt and started saving. We are now looking at trying to find a consultant privately to try to get more information and hopefully move things along before I'm too sick to tolerate the treatment (assuming of course that I haven't already got to that stage). 

Time is really not on my side any more and it scares me to think that I might not be well enough to go through this because it's taken so long to be suggested. The only control I have is to find the money to pay for as much of this privately as I can. 

We are making up for past mistakes and circumstances so that we can actually retire but for now it seems that the money we can save will be going towards medical costs instead. Then again, hubby wants to be able to retire with a relatively healthy wife. If things don't change we might find instead that hubby is forced to retire to care for me with not enough put aside to live on. That's a really scary thought. 

To anyone reading this, please know that your true wealth is actually your health. Don't take it for granted. 

I've shown that I can recoup money losses but so far I haven't been able to do much about my health losses. I really hope that I can change that so I can enjoy my daughter more and look forward to a happy retirement with hubby. My little bit of hope stems more from having been frugal enough to be able to pay for some private healthcare. It feels a little bit more within my reach. I wouldn't have this comfort if I hadn't been frugal the last 9 years. For this, I'm grateful. 

Who are my tribe?

Who are my tribe?

That's a heavy question. I think I've always been searching for my tribe, that is, those who are like minded. I've never really fitted 'the mould' that I thought I was given. I've always felt on the outside, never quite belonging.

I see this trait in my daughter too. It can be hard to relive those feelings through her, especially as I still don't really have the answers. I want to make it easier for her. It's a parent thing. Then again, these struggles might well be what shape her future and who am I to say that it's a bad thing.

I have found that as I get older, I still don't fit neatly into societal norms but also I don't really care any more. I might look like I fit in, big house, new car, typical suburban lifestyle but underneath it I don't think I have the same mindset. I don't feel like I'm really showing who I am beneath it all. I'm not even sure how I got here half the time!

I've gone through life trying to fit in. I was quiet in school and really wanted to be quietly creative and learn. I've got an intrinsic need to be constantly learning. I was called Swot or Beethoven (as a musician) in school. They were actually right. I wish I had embraced it instead of feeling ashamed of being different. I tried so hard to be what I thought was normal but made myself miserable.

When I left school and went to university things carried on in pretty much the same way. I wanted to be there to learn and expand, as well as to become independent. Most students just wanted to go off the rails with drinking and partying all night long. A hangover and missed lectures were a badge of honour. It never made sense to me. Nevertheless, I joined in to feel normal and make friends.

I met my first husband at uni. Looking back I thought that he was my tribe. He was also an introvert and didn't seem to want to fit into what looked normal. In fact, he deliberately went against the grain at every opportunity. I thought I'd met someone who didn't fit in just like me. We clicked.

Slowly, over time I found that I was now trying to fit into another mould that didn't fit, the rebel. I didn't want to deliberately upset people just for the hell of it. I went back to being the swot from before and hiding a big part of who I was. This was a huge mistake. I wasn't being true to myself or anyone else really.

Searching for my tribe

After uni, I started to work in medical research and it was here that I started to meet some of my tribe. We all had a thirst for knowledge and wanted to improve the world. I worked in academia where the pay was a lot lower than in big Pharma. We referred to working for Pharma as 'selling your soul'. In other words, you only worked for Pharma and their capitalist business for the money. You sold your soul (and often principles) for money.

In academia, I was happy. I was surrounded by like-minded people who had a real appetite for learning and research. We shared the joy in each other's discoveries and commiserated together when things went wrong (as they often do in lab work). My whole world revolved around my work and colleagues. I finally found where I belonged.

Behind the scenes, I didn't realise that I was stuck in a loveless marriage. He wasn't part of my tribe afterall and we have very different ways of looking at the world. I was too young to see it at the time. He had sold his soul to big business chasing money to keep up with the Jones (actually to show off to his critical family). He was pursuing every bonus and pay rise to buy the next car or gadget. But it never made him happy or his family proud.

I was doing well in work and no one had any complaints. I loved my work and it was the passion that kept me feeling alive. The money was useful, but I would have done it for far less. In fact, I went back briefly on a voluntary basis.

During these years, my ex-husband and I drifted in separate directions. He pursued pay rises and possessions. I pursued knowledge. The two directions meant that we drifted and our goals didn't align any more. Although I'm not sure they ever did. We never talked about life goals. We were young.

I did find that the more we ended up stuck in the rat race, the more unhappy I became. We were buying bigger and bigger houses, he changed his car at least every two years, gadgets more so. I went along with it as everyone around us seemed to be doing the same thing. I didn't question it...

... at least not until I became too sick to work and we lost an income.

Not looking so hot. I was
told I had a nice shaped head though!

Just months after I lost my job (and income) my ex-husband told me he didn't love me and left me and our daughter. In one year, I lost my health, my job (and passion) and my marriage.

During our divorce, I also discovered that we had zero assets and only debts. How on earth had I, a natural saver, ended up with nothing but debts after a decade of a successful career?

It was a shock. But it was also a blessing. Sadly, he was not part of my tribe and we didn't share any core values. It freed me to start again and really find out who I was. I was done with trying to fit into what was expected of me by society, and my husband.

I started on a new path. Financially, I started with less than zero. About £320,000 less than zero!! It was a long slog back and has taken many years.

The hardest part was actually emotionally finding my way back. Money is just a number. Yes, an important one, to a point, but still just a number.

I mourned the lost of my career and passion. I mourned my daughter's loss of her father. But tellingly, I didn't mourn the loss of my marriage as I quickly realised that there was nothing there to have lost.

It was now just me and Missy. I'd lost my tribe as well as I was no longer in research. Over time I stopped seeing and talking to old colleagues. We all moved on. Life does that.

When I met Matt (now Hubby), we were two lost souls wandering without our tribes. We clicked immediately, although it wasn't obvious why at first. We had both been stung and were going through our own divorces. I thought that we were good moral support for each other and if that was all that there was, then that was fine. We needed each other then but might not have later on. Either way, it was good for us both and it was amazing to both understand what the other was going through.

Missy loved him from the start

Years after we realised that we were members of the same tribe. We didn't call it that but we were. We both have the same core values and similar mindsets. Importantly, we have the same mindset with money so that was never a problem for us. Heck! We were both less than penniless when we met! We obviously were NOT in it for the money! We often joke about that but it is a real comfort to know that it's never been a reason to be together. I don't think it was a coincidence that my separation/divorce was a mere 3 months after my last pay cheque.

Hubby had an accident back in 2013 where he cut his finger off while tinkering with a boat engine. He was off work for 10 weeks after surgery and during rehab. At the time he was homeless and living with his parents again. He stayed with me and Missy for those 10 weeks so I could help to look after him. It was actually nice to be able to take care of him for a change after all the times he'd helped me.

During those 10 weeks we lived in each others pockets for the first time, and loved it. We talked for many hours, helped each other with personal things (as you have to after surgery) and became a unit along with Missy, who was about 5 years old at time.

Being Non-mainstream together

We had found another member of our tribes. We have similar beliefs and values, as well as a similar mindset. Yes, we disagree on some things but are happy to discuss and look at things from other points of view. For the first time I didn't have to pretend to be 'normal'. Whatever the heck that is? I was old enough and confident enough to be me and if Hubby didn't like it, then he didn't have to stick around. I wasn't going to try to be something I wasn't again for someone else. Turns out that he loves me for my non-mainstream self.

Our wedding day

Hubby and I got married in 2014, after he proposed on his boat the year before (not long after his 10 weeks post-surgery). We never thought we'd do it again but couldn't deny that we fit together really well. Importantly, we *get* each other. It was the first time I felt that anyone had ever *got* me. The exhausting having-to-fit-in wasn't needed any more.

In recent years I've found that Missy and I are both the extreme INFJ introvert types. It's why I didn't ever feel at home and why Missy struggles now. We are happiest surrounded by books in a quiet space, preferably in the woods on a sunny day where we can sit and learn something new. Missy also wants to be an author and her happy place is with her netbook in the woods writing fiction.

Hubby is also a quiet introvert but not so far along the spectrum as us. It works well. He enjoys his hobbies, including sailing with others, and understands our needs for lots of down time and quiet. We all crave a peaceful existence. We are both clawing our way back from near bankruptcy 9 years ago and designing a life and future for us.

Our goal is for Hubby to be able to retire when Missy leaves school. He will be 55 then and I will be 48. We've got to find a way to be financially free in just 7 years but I think we can do it. I love spreadsheets and have geeked out over the numbers! We are not frivolous and are very intentional with what we spend. We always have been. What we were lacking before was a goal to aim for. A purpose.

The natural habitat of an introvert
(said in the voice of David Attenborough)

We have written bucket lists a few times and have talked extensively about what we want to do in retirement. I was getting annoyed though as conventional retirement  is a long way off (when Hubby is 67!). My illness is progressive and I feel that time is ticking. We want to do these things before it's too late.

This new year we put together a plan for Hubby to retire in 7 years. In the meantime, we are trying to incorporate as many things that we want to do later on into our lives now. I'm learning to grow my own veggies, now. I'm making wine at home, now. I cook all our meals from scratch, now. We spend quality time as a family, now. No more putting things off. We are doing things NOW!

In the meantime, we are cutting our expenses back more so we can save something to live on for the gap years between Hubby stopping work and drawing his pension. I'm learning a lot about investment and passive income. We have stepped off the consumerism train with an aim to leave behind the rat race too. I crave a more simple life that is more in touch with our natural world. I've always been drawn towards it but tried to fit into the wrong mould for years. I guess I'm part hippy? Are hippies my natural tribe? I'm starting to think that they are. Was I born in the wrong decade? Maybe.

Getting the tribe together

The only other person I know who is in my tribe (other than Hubby and Missy) is a friend, Trac, who lives in rural France and blogs at tracdaviesartist.blogspot.com/. We met online at first. Finally, we met in person 3 years ago on our annual trip to France. It was like saying hello to an old friend. It was so easy and natural. That's what being with your tribe feels like. Our core beliefs are so similar. She has been a true inspiration to me and encourages me to find my true self. I feel like she's my big sister who has lots of good advice to give me. I'll really miss seeing her this year after my health (and Brexit) meant that we cancelled this year's trip to France. Thank goodness for video messaging and wifi!

I've had many friends come and go over the years but not many have made it to the inner circle of fellow tribe members. They are a much rarer breed it seems. Maybe they are all hiding in libraries somewhere? At least that's what Missy tells me!

Most people think we're mad for not wanting to be in the rat race and think that early retirement is only a dream. It's a puzzle to them why we don't want all the new gadgets. We would rather more time together down the line. I think back to those 10 weeks of discovery.

 I suspect that we are living in the wrong area. It's a wealthy area where you have to be in the rat race to live here usually. I'm only here because it's where my ex-husband wanted to live. Somehow I've stayed, partly due to the recession devaluing the house for years but mainly for Missy who is settled. I look forward to leaving it all behind. There's not much community here as everyone is out to work all day. The children aren't even around in school holidays as their parents both work. Missy is usually on her own through the holidays. I still wonder if we should move sooner but that would mean moving twice as I'm not staying when Missy leaves school.

We plan to move somewhere more rural but within an hour of the coast for sailing. Currently we are thinking about West Wales as Brexit is going to make moving to West France difficult. It might end up being France though. Options are always good.

For now, we are working towards our goal of a more simple life and still on the lookout for fellow tribe members. I suspect that they are in more village areas rather than the cities and suburbs. Or maybe they are all at the library! Missy might be on to something!

Where's my library card?

Missy, in her natural habitat!

Veggie garden

This is my third year of trying to grow veggies in my garden. Each year I feel that I'm getting a little bit better. It's been a steep learning curve as I've always had more of a black rather than green thumb!

I started my seeds about 2 months ago. I was collecting the trays that our mushrooms come in for months ready to start my seeds in. They are the ideal size, and best of all, they are free! I've even given surplus ones to a neighbour to use.

My seeds were started early this year as I planted them in the trays indoors instead of straight into the ground. I'm hoping that they will have a longer growing season this way as I find weather in the UK to be so unpredictable these days that the seasons have become blurred. Thanks global warming. NOT!

My seeds were started in mushroom trays I'd saved. The milk bottle in the
background has been turned into a min-watering can
by piercing holes in the lid. Ideal for seed starts and totally free.

My seeds were started in my conservatory. I figured that we don't really use the conservatory much as it's too cold in winter and too hot in the summer. So why not use it as a greenhouse? It's also become the general dumping ground for everything as we've been sorting and slowly decluttering since the new year. Not to mention it's become a parking area for my various mobility aids, wheelchair, scooter, walker etc. It's not really a place to relax this year so why not give it a use as a greenhouse instead.

Hubby brought in our garden table for me to lay the trays out onto. I can't get bend down to do things on the floor so this was ideal. We are not using the table just yet as the weather isn't warm enough for eating outdoors right now. It can go back out once the seeds are more established.

I planted a variety of veggies that we eat. I have spinach, that did very well last year. I also have salad leaves and kale this year to hopefully bulk out the spinach in our salads. Hubby and Missy like to take a salad to work/school each day. With these plants I can harvest leaves and the plants keep on growing. I also throw in a small amount of leaves from my various herb pots for some added zing.

One of my two tree sprites who watch over my garden.

I've planted tomatoes this year to try again. I've got both the normal toms and cherry toms this time as Hubby likes the normal ones to slice for sandwiches but Missy and I prefer the sweetness of the cherry toms. I didn't plant them last year as I found the outside mini-polytunnel a pain to use. Frankly, it's easier for me to look after plants indoors. The tomatoes will stay in the conservatory this time and I'm not bothering with the polytunnel. It was too small for tomatoes, at least it was for the monsters I grew two years ago. That was, the plants were monsters but there were very few tomatoes as I couldn't easily look after the plants and prune them properly. When I realised, they were already too big to get out of the polytunnel without damaging the plants. This time they are staying in the conservatory! I have enough as well for my mum to have a few plants. Not to mention the conservatory smells gorgeous with the tomato plants in it.

I have my usual carrots. They seem to do well for me and are really sweet carrots, ideal raw for salads as well as cooked after being frozen. I intend to keep the leaves this time as well and use them in soups and stews for extra nutrition. I might give some to next door's guinea pigs too.

The beetroot have just been planted outside along with the two
cheeky potatoes from last year. I'm hoping the eggshell barrier
will keep snails out. 

This time I'm trying beetroot and courgettes for the first time. We love both veggies. I seem to do well with root veg and a friend does really well with courgettes and squash in our climate too. So why not?

Both my beetroot and courgettes have now been transplanted outside into pots. The first night snails got at my courgettes and they killed one plant by eating through it at the soil level. I was not impressed! We get a LOT of snails here. I did put some slug pellets around the plants at first but this isn't ideal as I want to avoid chemicals etc. if at all possible. I then started collecting our egg shells. I washed them and crunched them up. I sprinkled the egg shells around the plants as a deterrent to bugs that slither. I don't yet know if it will work. Fingers crossed.

My courgettes went outside about 3 weeks ago and are thriving,
except the one eaten by snails!

Two years ago I tried using copper tape around my pots to keep the snails out of my carrots (another fave of snails it seems) but the little devils ignored it completely and left slime trails over the tape, then stayed inside the tape where food was plentiful! This year it's egg shells. Otherwise the pellets will be back out again. Snails, you have been warned!

What else do I have? Oh yes, exactly two runner bean plants! These were old seeds and most refused to germinate. I'd even given up on these but after about 5 weeks they popped up to say hello. Interestingly, I accidentally planted some with my carrots (I got confused with pots that all looked the same!) One that came up is with carrots and the other isn't. I added coffee grounds to my carrot seeds as I'd read that they like coffee. Who doesn't? It seems that runner beans also LOVE coffee. The bean with coffee came up last but is now about 20 times bigger than its friend. I think the other bean is sulking because I didn't give it coffee for the first 6 weeks. It's had some now so hopefully I'll have another caffeinated runner bean. Seriously, it's like it was given steroids!! I just hope it flowers before it reaches the ceiling.

For the first time I'm trying to grow radishes. I really like the peppery flavour they add to a salad and they are so expensive to buy then have a short shelf life. It will be far better to be able to harvest just what I want to use. They are looking healthy and will be planted outside when I get a favourable day to potter.

My chives are flowering. Sadly, I found I'm
allergic to everything onion family.

I did have to chuckle when I was planting out the beetroot seedlings. I had cleared a raised bed ready for them and forgotten about it. When I went back to plant it I found two potato plants! I must have missed two potatoes from last years crop and they have now started to grow. Why not? I've left them there to see what I get.

Other self seeded plants I've found are two parsnips. One must have blown down the side of the house and germinated in the gravel. There's no soil there, just building rubble as this entire estate was built up a metre before being built on for flood protection. We have awful soil, which is why I have to have raised beds. Anyway, this parsnip didn't seem to mind. I pulled it up before I realised what it was and it was the funniest parsnip ever. It had split into three main roots to work around the lumps of gravel. I wish now that I'd photographed it to show you. The other parsnip is seeded in our lawn. This time I recognised the leaves and have left it there. Again, I expect the same odd shaped root as our lawn is turf on top of building rubble! We'll see. I didn't actually plant parsnips this year as I don't have any more places I can put pots. They do well in our garden though. I simply choose to try something else as we can get cheap parsnips at the market.

Baby berry bushes destined for wine production.
Can you see the sneaky parsnip hiding in the
forget-me-nots in the lawn?

Last year, I planted four berry bushes. They are still very small but are flowering and looking healthy. I planted blackberries, blueberries, logan berries and raspberries. My hope is that we can produce enough fruit to collect and freeze (before the birds get there) to be able to make wine from them in the autumn. Again, we'll see. I have big ideas that sometimes don't quite work. I might only get enough berries to eat with some pancakes but I'll still enjoy them.

In February I pruned my potted plum tree. It's doubled in size since but didn't have much blossom. I don't know if we'll get any plums this year. I know some fruit trees don't particularly produce fruit every year so it might be one of those varieties. If I get a few fruits I'll add them to the berries for wine.

My tiny plum tree has put all its effort into growing this
year instead of producing blossom

My pear tree, on the other hand, had loads of blossom. It was really pretty. The wind has since blown it all away. I'm waiting now to see if any of the stalks (stamens? stigmata? I can never remember which it is) will swell indicating fruit. The pears on this tree are so, so sweet that I only ever eat them straight from the tree. They are simply too good to do anything with except eat them.

Looking at this list I can see that I've really scaled up my production this year. I do have a few flowers in the garden too but I prioritise plants that we can eat. My climbing rose was moved last autumn to a sunnier spot as it didn't produce any flowers at all last year. I have already found two buds this year and it's only just turned to May.

My hydrangea didn't fully flower either despite the hot sunny summer we had last year. The flowers stayed green instead of going purple like before. I think that the tree next to it is now blocking too much sun and we don't get much sun down here in the valley anyway. I have to look for plants that don't mind the shade and water logged soil we have being never the river. Ferns usually do well!

I'm really looking forward to warmer weather when I can potter a bit more in the garden. I'm a complete novice but having fun learning. I find it relaxing, even if it doesn't always work out. Our next house (when we retire) must have a good garden for me. I don't go far any more so I really want to create a piece of paradise at home. I see these years in between as a chance for learning about gardening. I really aspire to the garden I remember my Grancha growing when I was a child. It was beautiful and full of food. And my ultimate dream is to have a big enough garden to have fruit trees. My very own mini-orchard, topped off with a hammock swing underneath for me to curl up in and read my books. Bliss! I'd better keep on learning!

Sustainability

Recently, there has been a lot in the news about climate change, largely thanks to a plucky teenager named Greta Thunberg. Greta started the school strike for the climate last year and it has gone global. Well done Greta for proving that one person can make a difference. Her bravery is exceptionally humbling. There are not many adults who could give a speech to the EU but Greta nailed it. Go girl!

The symbol for the Extinction Rebellion.
The circle is the Earth and the
hourglass is time running out.

The other group in the headlines has been the Extinction Rebellion. Although, I have noticed a difference in the reporting with this group. The exposure has been less and also the emphasis on the reporting has been about Londoners being inconvenienced by them rather than actually reporting what the protest was about. Shame.

I believe that the difference in the reporting is primarily because the school strikes were by children, whereas the Extinction Rebellion is organised by adults. That said, even the children striking was criticised by many as irresponsible in the UK. Oh, the irony of that statement!

As an individual household, we have been making small changes for years towards reducing our carbon footprint. Missy was taught in infant school about climate change and was active in the school's Eco group for a while (until she realised that the other kids weren't particularly serious about it). Since, Missy has carried on her research independently at home and regularly discussed it with us around the dinner table.

Missy has also been regularly going around our neighbourhood picking up litter for the last 2 or more years. It breaks her heart when the following week she can see that there's even more litter everywhere. I'm very proud that she's sticking at it after so long. If only there were more people who thought about it. Several of Missy's friends will often join her for an organised litter pick up, so I do have hope that her generation will be better than ours.

That said, what school age children can do is limited as they don't have control over household decisions. They can't even vote yet so they can't influence officials easily. Greta did the only thing she thought that she could. She striked from school with the message that if we (the older generations) don't care about her future (on this planet), then why should she care? She has a really good point.

As the parents of these plucky kids, what can we do to help? 

The obvious thing is to vote for the party that best aligns with your values. The children can't vote, but we can. Take a look at each party's manifesto to determine if they are right for you. Interestingly, after our recent elections, the two major parties (Labour and Conservative) lost seats. The Independents and the Green Party picked up most of these seats. It looks like change might be around the corner in the UK and about time.

I've been tactically voting for years to keep out the worst party rather than voting for my first choice (Green), until recently. I couldn't see how they would ever get in when all my life (in my 40s now) it's been a two party race. I'm hoping that the two party race is now over and others with (hopefully) more progressive views have a chance to influence more.

As parents, we can also help our children to write to manufacturers and organisations expressing what we would like to see change. For example, supermarkets are slowly moving towards less plastic use thanks to public pressure. We can also write (or email) companies that we are impressed by and encourage them to lead the way for change. As a nation we are quick to complain but not so fast to tell someone that they are doing well. Letters of praise can help businesses to keep up momentum.

On the subject of consumption, adults have the power to vote with their money too. We don't have to buy products from companies that don't align with our values. We are trying to cut down on plastic packaging on foods for instance. Therefore, we choose to buy loose fruit and veg using our own reusable cloth veggie bags. (Affiliate link) We cook everything (just about) from scratch so we don't buy any processed and heavily packaged foods. Our weekly rubbish has halved with this one small change alone! We have the power to boycott businesses that need to do better and it doesn't always cost more money. We have reduced our food bill by about a third by cutting out processed foods as I discussed before.

Even better, reduce consumption all together.

Everything that we buy has some cost to the planet. All the resources to make consumer products start in a humble form, like metals mined from the ground, plastics made from crude oil, cotton grown in fields, and so on. Everything costs the Earth something. So why not be more intentional about what we buy (and already have) and make them last as long as possible? Reuse items before they are (hopefully) recycled. Recycling isn't the answer alone as the recycling process itself costs us energy resources. I believe it's better to fully use up what we have before buying again, preferably second hand. If we all reduced our consumption of goods by 10% imagine the difference we could make!

This is a journey that we, as a household, started about 9 years ago. It started because of lack of money but we quickly realised that many of these efforts were also helping to reduce our impact on the Earth by reducing our carbon footprint. Shortly after, Missy became passionate about Eco issues and we've carried on refining our habits each year since. Saving money and looking after the planet mostly seem to go hand in hand for us. It's a great incentive. I'll have to write a few posts about the changes that we've made as many were so easy that I kick myself for not doing it sooner.

The journey continues...

Media break

I've felt quite chilled this last week. That's actually quite an achievement for me. I'm usually a highly strung person who is always shaking her head at the idiocy she sees all around. But not today.

Today, I woke early and didn't dread the shower (as it wears me out with fibro). I was up and dressed without procrastinating. Downstairs is vacuumed, the laundry is on and coffee is brewing. I'm planning dinner, at least in my head for now. I've got things to get on with today but no timetable for them, which is how I like it.

Going with the flow and watching time pass

We had a wonderful afternoon yesterday around a neighbours place for lunch and drinks, which hubby and our neighbour greatly enjoyed! They both need a drinking partner as neither his wife or I drink. Hubby even got away with only a minor headache this morning, which is impressive given the shots that were going down! Hey, we only live once and it's not a habit for either of them.

Having a highly sensitive nervous system and fibro, I'm more than happy to have a chilled day at home today. I love to socialise but it does take a lot out of me. So pottering about today without a schedule suits me fine.

One of the problems with being what is termed a highly sensitive person or HSP is that I feel everything in a heightened way and don't seem to have filters. I take on the moods and feelings of those around me, even those who I am reading about. I feel their emotions and troubles as if they are my own. It can make socialising very exhausting.

It doesn't stop with face to face contact though. I stopped routinely watching the news about 10 years ago as all it did was make me feel bad. Every piece of news is negative and about suffering. I feel it all and it brings me down. I seem to take on the world's troubles as my own and get overwhelmed.

Social media has become just as bad since it first came about. It used to be a place where I kept in touch with distant friends and family, and shared photos of adventures when I lived abroad and when Missy was new born. It was a relatively friendly place.

Now I see more of the bad side of social media. It's all clickbait and scam articles that circulate repeatedly by those who don't check if they are real before sharing. It's full of things like animal abuse photos, aggressive political views (especially with Brexit going on), religious views being forced onto you, all the ads seem to be trying to sell me a scam cure for whatever illness they think they can profit from. My illnesses all have no cure so seeing this every. single. time I log on is insulting at best, upsetting at worst. There are trolls everywhere and there's a lack of censorship with all the sheep sharing things that enrage them without verifying any of what is said. It's a hostile place, the badlands of the internet.

In short, social media should come with a health warning like cigarettes do. Using social media is bad for your mental health and can cause feelings of despair. How does that sound?

Soo, not the Jones!! Just goofy!

Social media has become the home of the Jones and everyone trying to keep up with the Jones. It's a place for showing off to the world just how good your life is, even if it's not. No one puts the really bad stuff on there. Most don't even put the run of the mill downside to life on there. You see an extremely one-sided view of everyone else's lives. Then you fall into the trap of wondering why your life isn't as perfect as everyone else's.

This is a big worry for the vulnerable in society and our teenagers who are still learning about the world. I'm thankful that so far Missy doesn't want to have anything to do with social media, but I know it will happen at some point. She is also an HSP, so I worry about the effects it will have on her. I also don't know how to parent effectively in this matter. Kids are more savvy with tech than their parents these days. We didn't grow up with it but they did and it's as natural a part of life to them as having a tv is to my generation.

It's not just kids that are vulnerable. I've noticed that over the years I tend to use facebook more during times of stress. It then fuels my stress and makes me feel worse. I'm not even sure why I do this to myself. In the middle of the night when I can't sleep because of pain and everything is quiet I know that somewhere someone will be on facebook. Before I've even thought about it, I'm downstairs with a drink, the intention being not to wake hubby, and facebook is on. It's the only distraction during those long quiet hours.

So I scroll through a few pages. It re-enforces to me that everyone else is leading a happy, healthier life than I am. Then I definitely can't sleep with the pain as I've now added an emotional layer on top of the physical pain that stopped me sleeping in the first place. Yet, I fall victim to this trap time and time again while desperately searching for a distraction.

I like to think that I'm an intelligent person yet I still allow this trap to get me. I wonder if I have an addiction problem. Yet, I don't use social media much when life is on an up so I doubt this. So what is it about this technology and how can we avoid it's negative side? If I keep getting caught in it, how can I help Missy when she starts to use it? What a mess!

Last year, I stopped using all social media for 3 months. I didn't ban myself from it for a set amount of time. I just thought I needed a break so I stopped using it. And you know what? I felt better in myself and more confident. I stopped feeling like I needed to justify my existence all the time. I was able to say no to people without needing to offer an explanation. It was liberating and totally unexpected.

After about 3 months I went back onto facebook as it's a convenient way to keep in touch with friends who live abroad. It's the reason I joined in the first place. Then it slowly went downhill again.

There are some *friends* who do nothing but complain. I know everyone needs a shoulder at times and I'm usually the first to offer (it's an HSP trait). But after a while (nearly 10 years in one case) it becomes obvious that some of these people are not willing to help themselves and simply must enjoy being miserable.

Those who I didn't know very well were unfriended and my newsfeed became a bit more friendly. I went though all my friends list and reduced it dramatically. I have culled most of the pages that I follow (or others have followed for me!) and I have blocked aggressive pages and groups.

For a while all was good. Then facebook started targeting poor-ole-me-with-too-few-friends with loads of suggestions and clickbait adverts. Facepalm! I wanted a small group of quality connections. I'm not interested in a large number of *friends* who would never make the cut in real life. Yet this seems to be forced on us now in a bid to further attract paid (unvetted) ads. The more connections we all have, the more effectively ads can be spread around. It's all about money and greed. Very little about friendship now. What started out as a friendly place had become corrupted.

A couple of weeks ago I was going to deactivate and delete my account to prevent further temptation. I debated this for months beforehand and sadly decided against it. I use Messenger on my phone to keep in touch my friends overseas and we use video calls on wifi as the cost to phone is high. I don't know if I can still use messenger without having a facebook account and I don't want to switch to another app that is covered in adverts.

I did the next best thing I could think of. I've deleted the app from all my devices. I don't have such quick access to facebook now. If I want to use it I have to go and turn on the laptop (in another room) and load it through chrome. It's still quite easy to do but I don't have the habit of using social media on my laptop so it's easier to forget about.

It's been about 3 weeks since I've deleted the apps and I have only logged in once (as I couldn't see a link I was sent in messenger). I was very good and didn't scroll down the page. I did feel uncomfortable though with it there. Honestly, I have more will power avoiding gluten containing foods that I absolutely will not eat knowingly. I'm not weak willed, yet facebook is devious.

This week has been the Easter holidays so Missy has been off school and Hubby has been around more too. Usually, this stresses me if I don't get enough quiet time but this week it hasn't bothered me. In fact, I've wanted to socialise more than usual.

I'm going with the flow! What?

I've felt lighter and more my own person. I haven't justified my existence or given reasons for shortcomings. I've gone with the flow a lot more. I've also found a lot more time for reading and writing without these worries and doubts floating around. I feel happier. I am more accepting of myself. I have limitations that others don't have and am no longer feeling the need to punish myself for things beyond my control. I've stopped comparing myself to these rose tinted versions of everyone else's lives. Even though the logical part of me knows that they all have crap in their lives as well that they don't share, the subconscious part of me doesn't seem to recognise it. The subliminal messages are still there telling me that I'm not good enough. So I've cut them off at the source.

Maybe, I don't actually need to live as a hermit, but simply live in real life and leave the digital well alone. Additionally, I don't watch much news on tv as there's little I can do about any of it. In fact, I watch very little live tv at all so I don't see many adverts either that tell me I'm inadequate.

I know that there have been many studies done on the effect of all these things in our lives, especially on children. It is down to the government to put in place better laws to improve these things but that's unlikely to happen. We live in a world of greed where anyone is a target for advertising in order to make money.

The only control I have is in my own life and household. We talk openly about these dangers and I have discussed adverts with Missy since she was young so that she can see that they are preying on people to sell you things you mostly don't need.

It's a work in progress. Life always is. For example, this second I've received an email from BUPA trying to sell me medical insurance that they actually can't give me anyway! Oh the timing!!

I know everyone looks back on simpler times through rose tinted glasses but I firmly believe that life was simpler before the digital age. Communities were actual people down the road instead of in the digital fog. We talked to each other then. It was far more healthy.

I do love lots about the internet. The access to knowledge that I only dreamed of as a child, in particular. eBooks are my favourite invention! I realise now that we need to be very selective in what we allow into our lives. For now I'm back on a social media blackout. I don't know if it will stick this time but I'm happy to have a break from it.

Every community needs a goat!