Monday, 11 November 2019

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

Thursday, 24 October 2019

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!

Sunday, 20 October 2019

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.

Friday, 20 September 2019

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!

Friday, 30 August 2019

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.