M.E. Awareness Day & Week

Today is M.E. Awareness Day and this week is also M.E. Awareness Week, so I thought I'd come and write something here.

I've lived with M.E. for 23 years now and it just doesn't seem to get any better. I think it's partly the disease process and partly the lack of coordinated care/treatment plan by any medical professional. Instead of viewing me as a whole, issues are dealt with as they arise - allowing them to arise when perhaps some of them didn't need to. For the most part I've been left to cope and worsen by myself - with absolutely no medical help. Instead of the life I dreamt of: a husband, children, home, car (and ability to drive), a job and money, I've got a dog and 6 lovebirds, and I live with my parents. At age 33, I have no independence; I am totally reliant on others to facilitate anything I do: from the food I eat, to the places I go. In short, it's not a life, it's an existence.

Since I last wrote, things have been very difficult for me healthwise.

Towards the end of 2013, problems that had been developing for years started to come to a head. They weren't M.E. problems specifically, but having M.E. and autoimmune thyroid disease increases the chance of me having these issues (and vice versa). The upshot of this is that I have been busy visiting doctors, hospitals, and pharmacies since December last year.

The end result is that I am now on the waiting list for a laparoscopy. In the meantime, before I can have the surgery, I have to have an MRI of my pelvis, and specifically my bowel. At the moment I have a provisional diagnosis of endometriosis. When you combine the M.E., thyroid issues and endometriosis, you get a big ball of ****. Until 2 weeks ago, I was unable to sleep as I couldn't get the pain under control and had run out of  sleeping positions to try. After a change of meds, I am now able to get sleep, but I hate taking all these medications. It's a constant battle to be comfortable/not in excrutiating pain, and my ability to stand is even more impacted so I pretty much can't stand for more than a minute without suffering badly for it.

It seems as if I reached a point a year or two ago after which the endometriosis symptoms started to really 'run with momentum', like a snow ball rolling down a mountain gathering more snow and speed. I ignored it for a wee while as I just had no confidence in doctors. It had to get to crisis point before I was basically forced to go to the doctors by my family.

I'm also dealing with heart issues again. I have to see the doctor to discuss it. I'm dreading that. I find it difficult to advocate for myself - it's so draining. I just don't have faith in any of the doctors I see, so now I only seek help when I literally have no other option.

One of the things I feel M.E. has caused me is a progressive bodily breakdown. I have just added more and more things that are wrong with me to the mix. Every time I try to move forward with other areas of my life, something else goes wrong with my body. I feel as if I cannot catch a break. I might be good at planning ahead and pacing and knowing my limits, but I can't plan for these extra things.

I'm still taking the LDN - I cut the dose back to 3 mg as I was concerned about becoming used to 4.5 mg.

Anyway, I guess that's my awareness post - a fairly personal one.

An Update: Crafting and a Visit to the Doctor

Things have been up and down since I last wrote on here. I have been battling a fluey cold for a while; it really does not want to go away! It has been a bit disappointing as I really wanted to get things done for the holidays. That being said, just before I totally collapsed with this 'thing', I did manage to finish making 2 presents and get 6 handmade Christmas cards done.

Hand Made Christmas Cards

I am really proud of my creations.

The upside of doing this craft work, is that it has reignited my passion for crafting. It's been buried for a long while. I have dibbled and dabled at a little knitting, some drawing and so on, but I've just been so busy trying to figure out how to help myself medically, that it's taken precedence along with my business plans. Now, I am desperately striving for a better balance so that I can manage to do the crafting alongside the other things. One reason I really want to manage to continue doing it is because whilst it is exhausting, it is also really relaxing and therapeutic. That probably sounds a bit weird, but I just go into the 'zone' and get my mind focused on this one thing... and I am pulling ideas out of my brain... which means I can't think of anything else. I like that!

Personalised Hand Made Applique Dog Cushion

Anyway, the bad news is that I have finally had to face a fact. Something else is going on in my body... again. It's been developing for some years, but... I have not been able to get a doctor to take me seriously about it. So a few years ago, I just gave up. I thought: 'Well, if they won't help me or listen to me, or take me seriously, then I might as well just stop trying to get them to and just live with it (manage it as best I can).' This kinda worked in the sense that I was somewhat managing it and gritting my teeth and grinnning and bearing it, but then it was getting worse and worse each month, and the past few months (especially the last two) it got so bad that I can no longer cope anymore. The thing which finally made me give up and go to see the doctor is that I was in so much pain that if it got one bit worse I was going to have to go to the ER, and basically for me to go there means I am at an 11 on the 1-10 pain scale.

It's quite bizarre... I rang up the GP's surgery to be told there were no appointments this side of Christmas (this was last week). I explained the problem. The lady told me to call back two days later at 8 a.m. and they would book me a call from the doctor. So I did that and the doctor called me back and booked me an appointment to see her that morning. What a convoluted system!

I will explain more of what is actually wrong, when I find out. Suffice to say, it's now bad enough that I am being taken seriously. At the moment I am waiting for a scan appointment at the local hospital and pending the outcome of that, I will then know if I need to be referred to a consultant.

Seizures in Sleep?

For the last 4 years I have not slept next to somebody. What one doesn't realise is that not sleeping next to another person means you have pretty much no idea what you do while you sleep. Recently I was dragged away to visit my sister as my mum wanted the company. There was only a double room, so we ended up sharing a bed together. Oh my...

... apparently something very odd occurs during my sleep... I seem to have some kind of seizure. It happened two nights while I was asleep. I am completely unaware of the whole thing. I don't snore (which I knew as I have been recording myself during my sleep using a sleep app). Th funny thing is, the sleep app was recording me in the night for apparent snoring, but whenever I listened to the sound recordings, all I could hear was masses of rustling noises as if someone was moving around loads, which I never really could make sense of. Now I am thinking - is that me jerking around during these episodes I seem to be having? It would make sense of the sound recordings if it were. It would also make sense if I am doing this because I have been really struggling morning-wise for some years and the doctors agreed it's not normal; however, they never followed through on the sleep study which one doctor advised another doctor I should have. They thought I might have sleep apnea or something of that nature. I wake up feeling appalling - as if I have gone 10 rounds in the boxing ring, with migraines/headaches, lightheadedness and nausea etc. Now I am wondering, if I can tackle this issue, maybe I would feel a bit better during the day and also be able to function more normally in the morning (i.e. get up without this mammoth struggle and actually be present in the moment rather than off on another planet in a distant galaxy far over there - which is where my morning brain likes to reside).

Took this picture while away of: the beautiful Hampshire Downs

I started doing some research (as usual) and it seems that nocturnal seizures are known to occur in some people with M.E. Hmmm... who knew? Anyway, aside from taking a pharmaceutical (which I would have to find a doctor willing to prescribe), I can try taking L-Theanine. I was taking it before for a while, but when it ran out, I never bought any more. It's meant to be effective in helping prevent these seizure issues, so I shall have to try it again and see how I feel in the daytime.

Poor Millie (my dog)... I think I have probably been driving her insane at night with all this movement (she sleeps in really late these days and also seems tired all day). The irony being that my dog has epilepsy and has woken me in the night to have a seizure... so we're somewhat even.

Argh! Good and Bad

Things continue to be quite difficult. I seem to be going through some kind of personal hell, but there is light at the end of the tunnel...

To cut a long story short, I was suffering that much that I thought I would finally just up the LDN to the 4.5mg. The rationale being: seeing as I already felt so awful, the side effects of my dose increase would be lost in the general awfulness (no time like the present eh?). So I did it. I took about a week to get over the LDN herx (which I am surprised I still got this far along the dose increase), and I am now feeling the better effects of it.

The better effects are:

I managed to do a little sewing yesterday and this morning (on the sewing machine - pictured below). I managed to play Words with Friends (I gave up last week and resigned or whatever it is you do... as my brain was just stuck) and win (by a few points). My sleep has improved massively... in fact this is the biggest difference!!! It's exciting. The time I am getting to sleep has been swinging round quite dramatically (as in quickly) from 2-3 a.m. to 1 a.m.-ish. When I get to sleep, I am dreaming! Dreaming big dreams... that I remember some of the next morning. I also feel as if I am sleeping rather than being in this weird state of semi-consciousness that I call sleep and others would call dozing.

The not so good (room for improvement):

I have been spending every day in bed whereas normally I try to be downstairs for a big chunk and go back to bed around 5-ish. This started before LDN and I am hoping it might go away. Recently on the good days I have manged 1 to 2 hours spread out over the day downstairs eating my meals and doing a wee bit of something (can't even think/remember what), and on the bad days I haven't managed that and actually gave in (probably shouldn't put it that way) and just lay there. I think it's hard not to start to feel down and panicky when this happens. Part of my panick and depressive feelings have been hormonal and part have been just pure fed-up-ness. I sat in bed crying - something I never do - because I am so fed up with dealing with my body and the horrid pain and nausea. I have been really nauseous... and just when I think it's gone, it comes back. I have been through periods of chronic nausea before, so it's not a new thing... just it seems to come in episodes of weeks or months and then disappear for a long time. I don't really know what that is. It seems to happen when I feel worse and have a decreased ability level. Not that my body loses any weight... but that's a whole other issue.

Anyway, I have decided, seeing as this is how my body wants to be right now, I am not going to push it. I am reining back in and giving myself this extra bed time and not making any social commitments even though I promised quite a few people I would see them in November. Oops. I feel A LOT better horizontalish (legs up) than I do standing up or sitting up. It's almost like going back to Pacing 101. I do think this also probably has to do with the autonomic issues as my body's urge to faint/blackout seems to be on a high at the moment and of course when I am more horizontal it's not causing me that issue, which feels a relief.

I'm not going to lie, I've been quite ill...

I am loathe to write this, but at the same time, I feel I should.

While I have made progress in certain areas of my ill health, I am not going to lie... I am still not doing well overall... I am grateful for any gains and small mercies, but if I am honest, over the past few months I have been on-and-off quite unwell. I am not bedbound all the time, but I am having long periods of being bound to my bed and just getting up to go to the loo. Even after all these years I find it hard to always know why... sometimes it's obvious: I did this activity/thing, and the PEM is what occurs later... but sometimes it seems as if I am doing all the right things.pacing well and still suffering. It's hard to know what to do then... because you don't know why, so you can't formulate a plan of attack. I know it's bad when I start fantasising about mobility scooters and those wheely things that have a seat on them that mainly elderly people use.

I see now it's called a: Rollator. This image comes from:
http://www.completecareshop.co.uk/index.html

Being excited by those things also depresses me as it's further away from my goals in life and I feel as if having to rely on them is going backwards towards the wheelchair. I want to be going forwards towards fitness!! I am also scared about deconditioning.

I know for a fact that winter does not suit me - lower light levels (and lower Vitamin D), the cold and damp, all have an impact. I try to remember to use the SAD light when I can tolerate it and I am taking high dose Vitamin D daily.  I have also added in a sublingual Vitamin B complex. The cold and damp I cannot really change except to try and keep warm and to wear my gloves when going into cold situations to stop my hands flaring up.

I also think I have been under quite a lot of stress and pressure over the past few months - for various reasons. Certainly setting up business #1, which as I mentioned before is taking ages, has been taking up energy and I think that I am not pacing myself well enough there. I am either doing it or doing nothing at all... at the moment I am in limbo because I need to get a workstation and the one I wanted suddenly went up in price by about £80! I feel guilty when I don't do work at my business as I need to develop my own income stream and become more independent. I also feel frustrated because I actually want to do it and get it going... I know I can be useful and good at something, but I am always fighting these limitations and sometimes on top I end up fighting viral/bacterial infections or the allergies... and that just makes everything 10 times harder/worse.

Overall, if I am honest with myself, I have been doing more this year and not really realising or properly allowing for it, so then I pay for it by being 'unable' or going backwards or progessively getting sicker. I think what frustrates me the most is that on the LDN, I have had some periods where I felt different - in a way that I haven't felt before... since being sick - and because of that, I took it as a sign I could do all these things... and overall that feeling has now gone. Being a glass half full person, I do acknowledge that at least the fact I could feel like that is a sign of hope... that my body could one day be somewhat better or even have some kind of miraculous 90% cure or 100% cure (I did read about this happening to someone who had been sick with M.E. for 19 years).

I have one more increase of LDN to do, so I am now thinking that I probably should do that, as if it does make me feel awful, then at least it goes along with my current awfulness and I probably won't notice it as much as I would if I were in a good patch. I am hoping this increase might kick start my system again. My concern being that if it does, if I am at the maximum what happens if this situation occurs again (which I suspect it might). I did read of a lady with M.E. who split her dose of LDN when this happened and it worked. So I am going to look into that more and see if that might be an option for me.

The gluten free diet is also having a major impact - now if I eat gluten, I am getting a clear (and nasty) reaction, which in one way is scary and unpleasant, but in another way makes me feel that at least sticking to this might bring about some gut healing and help me overall. It is quite hard to be GF when I do get to go out - and I was unwittingly glutened which made me really ill... so now I am figuring out how to be even more careful. It's far easier to cope with the food element at home (so there is some benefit to being stuck at home most of the time).

Canary in a Coal Mine, Jennifer Brea & a Great M.E. Article.

The other day a lady I met online, who also has chronic illnesses, alerted me to this:

http://www.canaryinacoalminefilm.com/

So far, so good - they are raising money and I hope this film raises a lot of awareness and maybe actually instigates some change.

A view from when we took the boat out - it was the last really nice warm day of this year

Anyway, Jennifer Brea, who had the idea to create this film, was interviewed and helped to create the best article I have ever read on M.E.:

http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/

This is really a good article to read if you have M.E., and to get your nearest and dearest to read if they don't understand. Reading it made me feel release; sometimes being able to read someone else putting into words what you feel or think is so cathartic. I am finding it hard to write these days... which is ironic for someone who used to be a freelance writer! I just can't seem to get the thoughts out properly, so I shall sign off for now.

Before I go - we had a storm on Sunday/Monday and had no power for a long time... from early Monday morning through into Tuesday morning... so I am behind on work, but the good news is, I slept a lot and caught up on sleep where I'd been having insomnia. Yay!

An Update: Food Allergies & Intolerances, Mast Cell Issues and Earning Money With ME/CFS and Other Diseases

I've been away for a while because I have:

a. been busy
b. not felt like writing/blogging
c. not had the energy to do 'b' because of 'a'

I had an online friend come to stay for a couple of weeks from abroad. It was lovely to meet her and spend time getting to know her in person (we have talked A LOT online), but it was really difficult for me to host someone and I am still recovering. I was worried about this, but then I kinda threw caution to the wind, so to speak.

I have been really battling increased pain a lot recently. I am trying hard not to rely on painkillers and using other methods to help me. I also have been struggling to sleep well, which doesn't help. Anyway, here's my update:

Food Allergies and Intolerances

After I wrote my last post, I continued with the elmination diet. I found that in addition to reacting to the allium family (onion, garlic, leek, chives etc), I also can add broccoli, dark chocolate, and possibly lentils to my list. I need to retest lentils at some point. As I was a fan of broccoli, I was eating it a lot - and thus it was affecting a lot of my main meals. I am supposedly also sensitive to cauliflower (from previous testing), but I hardly eat it anyway so I guess it's one of those things you don't notice easily. With dark chocolate, I again avoid it, but if a wee bit is in something, I can get away with it.

The allium family are my main allegen. I think the problem was that although I knew this, I was not being careful enough about it. I was not avoiding garlic, as I believed onion issues were worse (which they were), but somehow I also seem to have become very reactive to the rest of that family. For example, I made a vegetable/vegan stew and used a tiny (and I mean tiny) amount of vegan stock powder in the overall dish. As soon as I ate it, I started reacting. No more veggie stock for me. Finding stock that does not have onion in it is so difficult...

Eating no onion and no garlic is a nightmare. When eating out or buying a ready made item from Marks and Spencer, everything has some of one of these things in it - even if no onion or garlic, sometimes people put chives in things or spring onion. I went around M&S with my mum and managed to find ONE ready made item I could eat - a salad with smoked mackerel in it. Everything else had onion or garlic in it! The result of this is that I have to eat very plainly and cook a lot from scratch. The problem with that is that I am not well enough to cook from scratch all the time. If I do spend my precious energy on cooking, then I can't get on with anything else as it takes all my energy for that day. As a result, I have found my business life is suffering. I need to use all my energy to focus on getting on with my work and setting up 2 businesses.

The gluten is also an issue for me, but not in an allergy way. It affects endometriosis symptoms I have - very badly. So I am still trialling gluten free to see if in the long term it helps me to control those symptoms. At the moment it's made them far more bearable, although I am still having to take medication and use a TENS machine to help me cope with them... before I was not even able to get them under control at all so to have this improvement feels amazing.

Mast Cell Issues

One of the things I have found incredibly useful from all my mast cell research is finding out that there is a children's liquid form of Benadryl. I know this might be obvious to some people, but as I don't have any little people in my life, I was unaware. The premise behind using it as an adult is that if you are exposed to an allergen you can quickly take it and it gets to work straight away as it is a liquid form. I bought two bottles and now keep one in my bag at all times when I go out. So far I have used it about 4 times. One example being: I was eating out at a restaurant and I started to feel the allergy rearing up, when I examined my food really carefully, I noticed what I thought was parsley stalk chopped up into tiny bits was actually chives! I immediately took a dose of Benadryl. Although I still don't feel great with taking the Benadryl (as it is drowsy inducing), it really dampens the response down so that I can still function enough without collapsing. 


As part of Mast Cell Activation treatment one also can take Quercetin. I started to take it and have found that on the whole it makes a difference to how I feel. I read on Phoenix Rising that other people have taken it and some of them found it very helpful.

Mast Cell treatment seems to stem around blocking histamines 1 and 2 (h1 and h2) and stabilising the mast cells.

H1 can be blocked with an h1 receptor antagonist such as an antihistamine
H2 can be blocked with an h2 receptor antagonist - http://en.wikipedia.org/wiki/H2_antagonist - a popular one being Ranitidine, which is normally used to treat excess stomach acid/heartburn.
Mast Cell Stabiliser - Cromolyn Sodium (but some people use Quercetin or another natural product instead)

Plus -> Slow-release Vitamin C (increased degradation of histamine; inhibition of mast cell degranulation; not more than 750 mg/day)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/table/T5/

Earning Money With ME/CFS and Other Diseases

The above has been a constant problem for me. Since I got sick as a young child, my whole working life has been blighted by M.E. and then additional diseases that decided to jump along for the ride. It's really difficult to earn money or dare I say, have a career, when you are so ill all the time. The problem I have found is that in the past, if I improved a bit, I felt under a lot of pressure to go into the workforce. It's almost as if people forgot what's actually wrong with me and viewed me in the same light as everyone else - so I was being expected to do what healthy people do, when I was not healthy at all.

What happened in the long run is that I then ended up adding another few diseases to my list - as if my body couldn't cope with the added pressure to manage getting up and out and working, so it just broke down a bit more. By the time I got to 2008/09 I was so ill that there seemed no hope of me ever working again. I think that one of my fears has always been, since then, that if I do go back to work, am I going to end up back at that point (or worse) again and so reliant on others. Realistically, as my parents are getting older, they are less able to help me when I am in need of care and they also do not want to be put in that position by me... which I totally understand, but have a hard time processing mentally. It's not like I ever intended to put them in that position, but now I think there is a feeling that if I push myself too much, the result will be worsening of my symptoms/ability level and as I am already quite ill, any worse means I need a lot of care. So, by default, it seems as if I am making myself intentionally sicker by putting myself at risk through attempting to work.


The upshot of all these years of being working age, but struggling to find any way to work, has been that I have had a lot of time to think and try to come up with money making schemes. Most of the people I know who are chronically sick have a better chance of earning money if they are their own boss. It's not that it's easier - because in many worse it's actually harder as you don't get a guaranteed income each month and have to find clients/customers or whoever it is that will be generating your income; however, being able to work from home/bed, working somewhat at your own pace and not having to explain yourself all the time is very liberating. I know that in my case, because I live in a rural area, I have to battle with not just getting myself up/dressed/fed ready to go to work, but also get myself to work and that involves long commutes. I used to find that by the time I arrived at work, it was as if I had done a full day's work already. Long term this is unsustainable. With running your own business, there are many of the things that are involved with working in an office or whatever, but you as the sole trader are able to decide how to approach them and when to do them. You can choose whether or not to take on a job or sell an item to someone. If you are feeling your best at 5pm then you can work then instead of working at 10 am. For me, the ability to harness my best moments of the day would be really helpful as they are too erratic to be predictable and yet, if I do harness them when they come, I find I get a lot done (probably just as much as someone who sits in an office for hours each day).

After much thought about the above, I decided that I wanted to experiment with trying to make life work for me - as in, to be able to generate income despite being sick. I realised that I could do with more skills/honing the skills I do have so that I might be able to use them in self-employment and this is what I have been doing the past year or so: working towards setting up and opening 2 or 3 businesses. I am still working on it - as seems to be the case with these types of thing, it has taken me a lot longer than I thought it would... things get pushed back and when I have been too ill to do anything, I have just had to let it sit while I recover enough to have another stab at it. I am hoping that eventually by this time next year I might have 2 or 3 things going and might be in a better place financially than I am now.

Mast Cell Activation, Allergies and The Elimination Diet

About 2 weeks ago, I started doing some in-depth reading into Mast Cell Activation. It seems that MCA could be a component for some people in M.E. and other diseases. I am always looking for a new piece of hope or a new treatment to try, and if something (usually symptoms described) resonates with me enough, I usually end up doing a marathon of research (and try not to make myself worse by overstretching myself).

One presentation of MCA is in Mastocytosis. I found if I looked up information on mast cells, I kept coming up against this disease. The thing is, one can have MCA without having Mastocytosis - see: http://www.mastcellaware.com/about.html. Anyway, Phoenix Rising's forum has a lot of M.E. specific information and discussion about this... so if you want to know more, check it out on there.

What interested me highly is that, even with Mastocytosis, out of the list of symptoms here:

http://www.mastocytosis.ca/signs.htm

I have at least 42 out of the 58 - so I feel that is is possible there is a mast cell activation component to my illness. I am currently exploring treatment which involves: histamine 1 and 2 blockers, and mast cell stabilisers.

In addition, I seem to have increasing allergies/intolerances - reacting to things/food can be part of MCA. On a Mast Cell Disorder forum, the reactions people were describing were SO similar to how I react that I was really surprised. On that note, I have recently been getting sicker after eating, to the point where I stopped wanting to eat. Yes, Miss Foodie, actually preferred being hungry/starving than eating and suffering the poisoned after effects. It reached a point where I felt that I need to sort this out... imagine if a big component of me feeling ill is related to allergies!

I started on an elimination diet 3 days ago. You can read about it on my other blog: http://theonionfreekitchen.blogspot.co.uk/2013/09/an-update-elminitation-diet-and-more.html

I already am having no reactive episodes after eating this restrictive diet. It will be interesting to see what happens when I start the food challenges. I am a bit scared to be honest, as when I react, I react so badly, I literally feel like I am being poisoned and my body goes into a terrible state. I don't want to induce that, but at the same time, I need to know what to avoid.

As I was doing more allergy research I came across a lady named Joyce Weaver wrote a book called The Gourmet Rotation Diet for Allergy Sufferers - while talking about writing the book she said:

Writing this book was one of the hardest things I've ever done. I was a chronic fatigue sufferer and some days I could hardly get my head off the pillow. It felt like I had a permanent dose of flu. I got no help whatsoever from the NHS, but luckily I found a private allergy specialist.

Having discovered that I had multiple food and chemical allergies and received pioneering treatment, as well as radically changing my diet, I'm now much better, thank goodness. I wrote the book because I just wanted to help other people in similar situations to help themselves.

I almost feel like getting in touch with her to find out who this allergy specialist was/is. Anyway, I think I will get her book and see if it might help me. You can read the whole article here: http://www.freefromrecipesmatter.com/recipes/cookery_writers/articles/joyce-weaver-09-13.html

LDN increased to 4 mg

Looking towards the West Shore, Llandudno

When I finally got back from my travels - after my birthday trip on the boat, I went to see my college friend and her son - I did something that was probably not that wise. In my defence, I had been waiting for months for the right opportunity to do it: a time when my calendar was totally free. I upped my dose of LDN from 3.5 to 4mg. I am now only 0.5 mg away from the optimal low dose.

On the one hand I had assumed that nothing bad would happen as a result of this increase, and on the other hand I had left the free time to make sure if something did go wrong, I would be able to work through it. Of course, despite my optimism I did get a bad reaction. I think this was partially because I had also done so much in the latter half of August, and I was already suffering and trying to recover from that, so the increase just tipped the balance. I was really sick... It took me about 8 days to feel the side effects of the increase lessening. One has to really hold onto the thought that 'this is just temporary and will ease', because the feeling is so bad. I have been suffering really bad brainfog/cognitive impairment, and that doesn't seem to have lifted... blah. I am hoping over time it will improve again.

I have one more increase of LDN to do, and will probably do that in the second half of October. I will be staying on LDN indefinitely. I can't see myself willingly coming off it now, as that July 2 day accidental break was a total disaster.

Now I feel I have experiemented with and realised the value of LDN in my treatment plan, I am moving onto looking into Mast Cell Activation and trialling treatment. I will probably post about that separately next time I write on here.

LDN definitely was making a difference!

http://www.lowdosenaltrexone.org

As I mentioned in my last blog post, I accidentally stopped taking LDN for 2 nights. You'd think a person would be okay without 2 night's of medication, but due to the way that LDN works (very quickly and on a nightly/daily basis), it seems not. So in the past I was debating:

A. Is LDN even doing anything?
B. Should I stop taking it at some point?

This accidental break has confirmed that A, yes it was doing something and B, no I will not stop taking it! I feel so upset/distressed, that I effectively did this to myself. I have been suffering so badly since I missed those two doses, even though I started taking it again. I guess this may be an M.E. thing because other people with M.E. have mentioned that they struggled to adjust to it and that stopping it (I assume for longer) was like having to start it all over again.

So what has happened to me?

• Needing to nap in the afternoon - I had stopped this as I had more stamina and didn't feel the need for it
• Sleeping for an extremely long time overnight and waking completely unrefreshed - I was not sleeping so much... I was still waking unrefreshed and finding it hard to get going, but I didn't need to sleep for 12 hours because I 'couldn't stay awake' type-thing
• Apathy and lack of motivation are back
• Anxiety through the roof
• Depression - I feel as if the black dog is hanging over me
• Cognitively worse - finding it harder to find words again, can't do any mental arithmetic... can't multi-task (though that in itself had not gotten particularly better with LDN)

My pain levels have continued to be bad even while taking LDN, so in that respect that has not worsened. 

I made a mistake!

I have been taking LDN since October - straight... never missed a dose, that was until I went away last weekend. I had written LDN down on a list of things to take, but because it is stored in the fridge, I left it until last to put in my luggage and I forgot. I realised when I was on my journey, too late to turn around.

I tried not to worry about it. What's 2 missed doses after all?

Well I can tell you that 2 missed doses is BAD... baaaaaaaaad!! I took one the night I got back, and I feel pretty much as if I am battling my body again... battling it's reaction to LDN. I was brave, I think, and started back on 3.5mg despite wondering if I should really be starting back down low at 0.5 or 1.5 or something. So far, I am just hanging in there. I really feel awful - I do think it's a mixture of not taking LDN and the fact I went away for a couple of nights. I also did not sleep well whilst away, which is fairly typical of me, but also not sustainable. I must remember never to do this again. It's not good...

I have slept well since I got back, but when I wake up, it's the typical: as if I never slept. I could sleep for weeks... but I can't as I have so much to do. Of course, just to finish me off, the weather is at 90 degrees F with no A/C. I stayed inside today for that reason - I feel bad for my parrots as they can't come out because all the windows are open, so I put them in their cage outside in the shade.

Been Busy!

I haven't written for a while because I just have not had time. M.E.-wise this has to be good, because normally if I don't write it's because I am too sick to write or have nothing to say because nothing has happened in my life due to being stuck inside.

I have finally finished my course - handed in all coursework etc. It feels good to have done 2 courses in the past academic year. I hope I pass the latest one. I did find it immensely stressful in the last 3 weeks and I was becoming very sick - especially in terms of pain levels and the Trigeminal Neuralgia starting to rear it's head badly (which is very interesting as stress is definitely a trigger!), but I am proud to have finished. I also managed 90% attendance.

I have been working hard on my business since then and also travelling around with my parents looking at boats. It's been nice to get out of the house a bit and to see other areas of England that I have not really seen before. I do find that even travelling in the car is very impacting on me, so I have been trying to take precautions like pillows, plenty of water, badger balm, painkillers, sunglasses/hat etc. I just need to be a bit more sensible about resting either side of a trip.

I really feel that LDN has made a difference to me now. I have been on it for nearly 8 months. Looking back a year ago, I would never have managed all this activity! I was pretty much housebound 90% of the time, and it was starting to impact my relationship with my family and my mental health too. It's not a miracle cure, as I am still essentially 'sick' - for example, I can't stand for as long as I would like before I need to sit down or at least walk to keep the blood moving around, I still suffer with the malaise/fatigue/exhaustion if I do not pace myself, and I am in a lot of pain all the time. Yet I do have better stamina, I am mentally feeling a lot better, I can feel that the disease progression has either halted or slowed right down so at least I don't seem to be getting worse anymore and I am generally better able to do things I was not able to do before - as in... I seem to have a bit longer energy/ability window each day before I have to throw in the towel or risk causing myself a mischief.

Les Amandines in Diss - Vegetarian and Vegan Restaurant

I am not really sure what to write as I don't have a lot to say specifically. Hmmm...

Overall I have been doing quite well. I think the good weather we have been having lately has helped. If there's one thing I have learnt over the past year, it's been the effect that weather has on me! At the back of my mind for years (since my teens), I have known that I do better in a warmer and sunnier climate, but the reality of this is really marked/highlighted for me the past year or two. I just feel so much better mentally and physically when it's sunny and warm. Hot, humid... nope. Warm, sunny... yes. Of course trying to find a reasonable place to live in the world that is not hot and humid, but is sunny and warm for most or all of the year is like looking for a needle in a haystack. If I ever found it, I would probably find it also is a war zone or has tornadoes or earthquakes or something.

I went to Diss in Norfolk on Friday. My family and I wanted to eat in a vegetarian/vegan restaurant and where I live there are none. The nearest ones are in either Cambridge, London or Suffolk. Les Amandines in Diss,which is in Norfolk... it was a long way to drive.

Les Amandines Diss - Courtesy of Tripadvisor

My dad kindly drove us, but I did find the journey very taxing. If you live in East Anglia and are into vegan/vegetarian food, then Les Amandines is a great place to go to. It's so pretty! To get to it, you enter a courtyard of little shops: a sweet store, a health food store (great for stocking up, a delicatessen (did good cheese/vegetables/coffee), a gift store of some sort, and then the restaurant/cafe.

Once inside the restaurant, you have the option of sitting inside or in their atrium/covered courtyard area. We opted to sit in the covered courtyard as the weather on Friday was beautiful: sunny and warm. To decorate there are plants and strings of lights and bunting, a stone floor and rustic tables & chairs. The other part of the restaurant that is inside seemed cosy; there was one area with a sofa that looked as if it would be nice in winter. From a disability perspective, the negative is that there are some random steps (1 or 2 at a time) throughout the building as it is old and the toilet is up a flight of stairs (not sure if they have a separate disabled one, best to check if this is important).

The menu has sandwiches/paninis and a couple of platters, specials, soup and cakes. On the specials' board there were items such as a vegetable chili, spinach and ricotta canelloni, creole pate, and a hot soup, as well as desserts such as raspberry and almond tart with ice cream or steamed syrup sponge.  The main meals like the chili and canelloni come with a salad and other accompaniments. It was all very tasty and fresh. The salad was, as to be expected in a vegetarian restaurant, very interesting compared to in regular restaurants. Their 'fizzy' drinks (soda) were a lot nicer and healthier than Pepsi/Cola etc, as they were using the Rocks drinks range and you could have either sparkling water or still water added.

My sister and I had the vegetable chili - it was really delicious and came with a very nice side of rice (I don't know what seasoning they used on the rice, but it made plain wholegrain rice taste yum!). The downside being that they used a lot of onion, and as I am allergic to it, I felt very daring eating it! It would have been nicer if they had included a more varied assortment of vegetables (some aubergine and courgette would have been a good addition). They did say, afterwards, that if we come again, to call up and they will make me something without onions which was kind of them. My sister, who is a vegan, had a vegan cake with vegan ice cream, which she said was very nice and I had a courgette and lime cake, which was superb! My parents had the cannelloni followed by the almond and raspberry tart - it all disappeared!

After we had eaten, we went into the health food store and picked up a few bits, including a bottle of Rocks Blackcurrant and Apple concentrate so we can make our own 'squash' drinks. I managed to walk into Diss and have a look in a few stores. There is a really nice bookstore that has a cafe/tearooms overlooking the lake, which I would like to try another time: Diss Publishing Bookstore (http://www.disspublishing.co.uk/).

Here are some pictures I took of Diss:

Diss, Norfolk

The lake at Diss was naturally created in the Ice Age

Cute Mother Duck and Duckling

The white building on the right is the cafe or tearooms part of the
Diss Publishing Bookstore that overlooks the lake - very pretty!

Things Have Been Difficult - The Juggling Game

As I alluded to in my last post, things were beginning to become a little challenging. In typical me (or M.E.) fashion, I started to relapse or crash or whatever you want to call it...I managed about 2 weeks of doing my extra course that required A LOT more effort, travel, carrying things, walking... and then it started...

Photo Taken by Me 

It's so disappointing. No matter how long I have been ill, I have still not managed to shake the disappointment resulting from yet another of my attempts at doing something, and then suffering for it.

I staggered on, missing one class of my language class, then managing one, then missing one and now it's the half-term break from both courses and I am sighing a big sigh of relief and trying to rest and relax and not focus on studying for a little bit. The good news is that while I enjoy my original language class, I actually only have one left after half-term, and for that I am grateful because I definitely would not manage to keep this non-sick friendly pace up any longer than that.

As a result of this whole situation, I did have a moment of self-doubt when I wondered: is LDN even doing anything?

On reflection, I realised that it seems to be working in a way I had not anticipated. Rather than being a miracle cure, which for me it is clearly not (and I didn't expect it to be), it actually seems to be preventing me from having progessive disease symptoms. I hadn't really thought about that before I took it and I hadn't really realised that it had happened. I had assumed LDN would just make me feel a lot better - not cured, but massively improved. In some ways it has made me feel better, although if I am honest it has been less than I had hoped. The biggest thing is that, for a long time before LDN, I was getting progressively worse, which was scary and very unwanted. Now, I am still sick in a big way, but it's sort of stagnant and stable. That is to say, I seem to be hovering in a 'range' of illness, rather than getting better or worse. The relapse fits within this range. It essentially feels the same as how I felt when I started taking LDN and was really struggling to cope with my body's reaction to the drug, so while it is still frustrating and a wee bit scary, it's not worse than before. If I obey the body and actually rest and pull back on activity a lot, I start to feel a bit better again... probably quicker than I did before taking LDN. So maybe it is fair to say my 'bounce back' factor is increased/faster?

I think it is useful to analyse in this way because I am definitely not going to stay on LDN if it is not doing a thing for me. I also think it can be easy to get used to how things are and forget how they were. At the moment, I have decided to order another batch of LDN, to gradually increase from 3.5 to 4.5, and try that for a while before making a decision over whether to continue it long-term.

Anyway, this whole experience coincided with me making a decision about whether to go ahead with hairdressing training in September. I basically had to make a decision within the next couple of months over whether to apply, and I was finding that a really stressful situation to be in. I think my difficulty was a mixture of me knowing that it would be a useful qualification for me to add (especially from an earning perspective) to my education, combined with me knowing how unwell I am, and how difficult I find it to even manage doing a few hours a week of studying... let alone a couple of days of physical activity, plus studying. I actually felt quite scared of the commitment and of signing up for something that I couldn't cope with, but felt compelled to stay on at because I am not a quitter and the financial commitment to such a course is massive and non-refundable. So rather than put myself through this, I have decied to postpone any attempts at achieving this goal, and to concentrate on my business and getting my health better.

Things Have Been Up & Down

As per usual, things have been up and down since I last wrote. On the positive side, I have been doing more for a while, but on the negative side, doing more has lead to me having lots of mini-crashes or PEM (post-exertional malaise). Exertion doesn't have to be 'exercise' as we might think of it... leaping around, running, cycling or even walking, but just doing more physical and mental activity in any form.

Once a week, I have been walking and carrying a heavy bag, plus standing more than normal and using my arms quite a bit. I noticed that, surprise surprise (not), it's erradicating the rest of my week. It is taking me so long to recover from it, that by the time the situation that requires me to engage in this non-M.E. friendly behaviour rolls around again, I haven't even recovered from the previous week's aftermath.

I don't want to complain, because the fact I am even managing to attempt all this physical stuff in the first place is amazing compared to pre-LDN where I was basically housebound except for the odd trip out in the car with mum. I just think it's a bit difficult to know that you are basically sort of making yourself unwell - in my case I am doing this because I need to for my career/profession and it's basically unavoidable. The good part being that it is not an ongoing thing, it does have an end date. I definitely would not be able to manage without an end date.

In better news, I found out I finish German class a week earlier than I thought, which is good. Not because I hate it or anything; I really do enjoy it, but because I find it so draining! It's first thing in the morning so I have to get up early. Since M.E. I have always struggled with getting up early and once I got thyroid problems, it has become almost impossible to rouse myself before 9 a.m. and be functional. Another thing I noticed is that if I do get up earlier, I basically use up my energy earlier, so I have to come to bed in the afternoon. On top of this, I find my brain is a. not working properly first thing in the morning and b. I find learning a language is mentally (and thus physically) fatigue inducing anyway... so all in all, I shall be glad to break from that.

To top everything off, Millie (my Yorkie) had a bad epileptic fit on Wednesday afternoon. We had to rush he to the vets. She was diagnosed with epilepsy. She has actually had 4 fits before, but was never diagnosed (the vets just advised us to monitor the situation) - 3 of them were when she was much younger and  she one partial one last year in the midle of the night. This recent one was bad though, and very upsetting to watch. I am just hoping she doesn't have them any more frequently (or at all) as if she has less than 1 per month the vets won't medicate her... and I would rather not medicate her as a. it's expensive and b. it has horrible side effects. Of course this whole drama caused me so much stress, that I haven't been good at all since. I feel like a ragdoll, zombie person. She, on the other hand, seems to have recovered quite well!

M.E. Awareness Day & Explaining Fatigue

Today is M.E. Awareness Day, and I am a little late in posting this, but hey ho...

I wish I could have attended, but with all the stuff I am already doing, I am struggling to manage so there's no way I could have done that too. Maybe another year I will be able to go.

I have done some M.E. advocacy work in the past, particularly when I worked in offices - for example, I organised an information sheet when I worked in one office and gave a little talk about M.E. A lot of the time people had/have no idea I have this disease as I hide it well. I have had so much stigma in the past, that it has become easier to pretend there's nothing wrong or to just remain vague. I sometimes feel bad for doing that, as if I am doing a disservice to the M.E. community, but I guess that I even that out a little by writing this blog and when people do actually ask me for information in person, I try my best to educate them that it's definitely not just about: "being tired all the time".

When I was younger, other people retorting that they were tired all the time... too, as if that was all it was about, used to really annoy and upset me. It was invalidating. I felt frustrated at my inability to put my point across and to fight my corner, but then the reason I could not do that was partly because I have M.E. and the cognitive function is not 100% working or present in the way it should be. Nowadays I do still get people who assume that M.E. is being 'TATT', but it doesn't affect me in the same way that it used to. I understand why people make the assumption. It sucks, but I get that they don't mean it personally. I have a kind of resignation to the situation: that they will never understand, unless they are afflicted themselves. It's been liberating to be able to get to that place and to accept that this may be something I cannot change.

I think on the whole the general public are quite ignorant about chronic diseases like M.E. When a person says they are exhausted or tired or fatigued, I try to remember how I felt like when I didn't have M.E. and I felt tired. I know this sounds a bit weird, but I remember there is actually a healthy tired. It's the kind of feeling after exerting yourself by going out for the day, and then feeling ready for bed, a nice refreshing sleep and waking up in the morning feeling ready to face a new day. People with M.E. don't have that type of tiredness, nor do they have good sleep, or wake up feeling refreshed. It's not even tired, it's as if the car has run out of petrol/gas: there's nothing there... no flicker of energy, no spark of life... when even cutting up some food on your plate and getting it to your mouth becomes too exhausting, that's not normal nor is it healthy and it certainly is not just 'tired'.

If only being tired were the M.E. sufferer's sole symptom, who knows, it might even be bearable to have chronic fatigue syndrome (as some people like to call it), but it's not... the whole system is affected. Every single area of the body's function seems to be affected: heart, brain, nervous system, endocrine system, musculoskeletal system, lymphatic system... even urinary/renal... I can't even remember all the affected areas... but anyway, it's like a computer being corrupted by a virus: eventually nothing works and it kinda implodes. Okay, so I haven't imploded yet, but I have noticed that over the many years of living with this disease, I have gained more and more health issues outside M.E. and there have been a lot of times where I have expressed a feeling of my body 'falling apart' so to speak... progressively getting worse.

So that's my explanation for the year!

My TV died... and so did my hen!

The week that has just passed was not bad, per se... it was quite good, but two things happened that were sad:

Dottie, RIP

First thing: my favourite chicken died. Dottie my favourite because she was the tamest and she used to talk constantly, which was very cute. She would come and eat dried mealworms out of my hand, all the time giving a little hen commentary, while the other hens looked on jealously because they are not so brave... eventually one of them would pluck up the courage to join her. The thing that is sad about her death is that she was not old: only 3. She died peacefully, with her little eyelids closed shut. My dad found her on the lawn... just lying there. I cried some tears and then had a bath and tried not to think about it.

Secondly, my TV died. I have a TV in my bedroom because so much of my life is spent in or on my bed. I otherwise am not an advocate of bedroom TVs, but without one in here I would a. miss out on shows that I find quite informative, b. die of boredom, and c. - heaven forbid - be stuck to my laptop (which is very draining for me) watching catch-up shows. So yeah, the TV was an oldish one... oldish in my TV-age-analysis is anything over 10 years; mine must be at least 12 because I remember having it when I was about half-way through college. Funny thing is, it's a really random brand that I have never heard of and I am sure it was bought in Lidl!! It has lasted quite well, all things considered.

So anyway, I banged the set, and tried fiddling around unplugging and replugging it, and... nada. After I finally admitted defeat, I decided to look online the next day at TVs. Well, TVs are a lot more expensive than I remember... even a small-ish one, which doesn't really exist anymore... 19 inches is generally the smallest, although there was a random one that was something like 15.something. I remember you could get a TV for 50 or 60 pounds. Now it's 90, or more likely 110 or more. I am still searching, although I am not sure what I would even consider payable right now. I don't really have 'spare' money. I already put off buying a HR monitor as I realised I have a couple of birthdays, father's day, and my dog's vaccinations to pay for over the next few months, as well as all the usual stuff like parrot toys (they get through them!), pet insurance, and the monthly credit card payment... so a TV is not really happening. Argh. I guess I should have set up a 'rainy day' fund. Maybe this is my prompting!

How to Keep Busy and Stay Sane When You're Chronically Sick - Mindfulness?

Recently, as in the past couple of weeks, things have ramped up here. This is partly because I have gone back to class (and started a new one), and partly because I also had a couple of appointments and various things that needed attending to. As I have written before, managing this type of situation is quite difficult or challenging when you're struggling with chronic sickness. I am surprised and pleased to say that I think I have been doing quite well! I shall review this at half term, and see how I am managing once the culmulative effect occurs - hopefully things will continue to go well health-wise. I think when you have something like M.E. mixed with other health problems, it's the little achievements and triumphs that stand out - for me to even do any class/es is nothing short of a miracle, when you consider that a year or two ago, I couldn't even leave the house consistently (so couldn't plan to do a thing).

Green juice anyone?

At the same time as being quite pleased with my progress, one of the things I have been struggling with is my anxiety levels. I would like to think that without chronic sickness, I would never have suffered from the anxiety that I suffer from. Pretty much all my mental health issues relate back to being ill. I get very anxious, apprehensive and nervous about new things because I worry that I won't be well enough to manage, or that I will be too sick on the day, or that I will go somewhere by myself and then collapse or be too sick to cope and what will happen to me... and those kind of anxious thoughts are self-perpetuating, so once you start down that road, it only gets worse! Some of it is probably unfounded, but some is founded in past experience. As one M.E. blogger wrote in their blog, when you become unable to reliably and consistently do things, you start to let people down and they lose trust in you. In my case, I lost trust in myself. I don't really trust my body to be there for me in a reliable and consistent way, because it generally is not. Building a better relationship with my body is a WIP (work in progress).

Another aspect of the anxiety is that because my life is unconventional for someone my age, people judge me. Ever since I got sick as a child, I have been negatively judged... by my peers, their parents, my family's friends, random family members... work colleagues, perfect strangers... and the big one: the medical profession. When you experience the criticism and judgement from a young age, it's formative... it starts to form part of your world view. This became a problem for me because it made me socially anxious. I went from being a confident, outgoing child/person to someone who struggles to cope with socialising. Of course, when you add on how sick you feel, that makes socialising even less appealing and my solution has been, to some extent, to avoid. I found it easier to remove myself and avoid social situations than to have to be assertive and end up rowing/having cross words with whoever it was who thought it would be a good idea to judge/criticise/invalidate me.

As I knew this was a problem, I started to tackle it again (I have bouts of facing it) by signing up for courses where I would have to walk into rooms full of strangers and somehow manage/cope. At least one of these courses is profesionally important for my career development, so there has been a real motivation to actually manage to do it. In doing so, I signed myself up for a big bout of anxiety... you have to almost go through it, to come out the other side. So after I experienced this awful anxiety from Sunday/Monday through until my first new class on Wednesday, I decided I needed to do something more direct about it. It felt very out of control and unpleasant to be so worked up about something, that should not be so stressful.

I was wondering what I could do to help myself to become more confident in my own abilities and to be less reactive on a sub-conscious level about the things that I find difficult - new situations, talking to strangers, using the telephone... anyway, aside from deciding to challenge myself to face them rather than just avoid, I went to Long Melford for the afternoon, and popped into the bookshop there. There was a shelf of books about various, I guess, self-help and religious themes, and one stood out:

http://www.amazon.co.uk/The-Mindful-Manifesto-noticing-stressed-out/dp/1848508247/ref=dp_ob_title_bk

It has mixed reviews, but so far I am enjoying it. Mindfulness is not a new concept to me, but is also not something I have managed to integrate into my life effectively... yet. I am working on this area now. I also bought another book along the same theme, which I can't remember the name of, but will read after this one.

General update:

For anyone following my LDN journey, I am still taking 3.5 mg of it and will be looking to increase that in early July. I would like to increase earlier, but I daren't because I am committed with studies until then and I really need to pass the course I am taking.

I am still taking random supplements when I remember. The best one is high dose Vitamin C, and also Vitamin D too. I really need to take the Vitamin D because not only have I been severely deficient in it in the past, but when I started trying to go in the sun without any sun protection for a bit (to allow me to actually get some Vitamin D), I ended up with a lesion on my face!

Another reason I think I have been feeling a bit better is because I started juicing again: green juice and eating a lot of salad, plus some 'slaw' and fruit, as I need to increase my raw vegetable and fruit intake again. I find that it does make a difference to the way I feel, especially the juice as it is quickly absorbed.

I am debating about whether to try the Bob Beck protocol, but at the moment I am holding out because I have a feeling that it would make me a lot worse before I started to feel better, and with the things I am committed to doing at the moment, feeling worse would be a disaster. The other thing that concerns me about it, is how I would take LDN. You are supposed to come off all prescription drugs (thyroid supplement is okay as it's a hormone) while doing the protocol and be careful about consumption of various foods. I have a feeling I could keep taking LDN if I took it straight after one of the things you have to do, but I need to check into that. I would like to give it a try, as some people have had good results with this type of protocol, but I am also conscious about not making myself permanently worse - for me, my current baseline as it stands is bearable, but not over-useful... and if I were worse, I would struggle to do anything. As my aim at the moment is to go back to self-employment, and run my business, I really need to aim for more ability, not less. So we shall see...

The Emotional Toll of Chronic Debilitating Illness

As is probably evidenced by my blog, I feel the emotional toll of being chronically sick is immense, and the longer I am sick, the more I struggle to cope with it. This week has been really tough in that respect.

One of my biggest issues is with my living situation. At my age, I really need my own space. I have my bedroom here, but it's not as if it's really mine. It doesn't 'belong' to me; as I don't own or rent the property. I felt this feeling increasing from late 20s to present. I have been unable to do anything about it.

There is the dichotomy - between feeling grateful and feeling guilty. I feel guilty that I am so distressed by my inability to have my own place, because I know I could be in a much worse situation (totally homeless or living in a third world country, and sick). I am grateful for what I do have; I always have been, and I give thanks to the Universe for this and many other blessings. Yet, the crux of this issue is that despite that, I know that with my education and my background, take away the sickness and I would have been in 'that place' that I crave. I would have most likely had a job, a good one, and earnt enough to rent or buy a place.

This knowledge coupled with feelings of being trapped, stuck and powerless, lead to total frustration. Not only does one feel frustrated and sometimes circumstantially depressed, but the emotional impact that this situation has on one can become leverage for those around them or those they come into contact with. For example, the precarious nature of one's dependence, becomes a 'verbal bashing' tool during conflicts or a bartering tool to manipulate the sick person with. That is not right at all.

In my case, while I know I am doing nothing wrong by not working, and that by not working I am no lesser a human being than others who are well enough to work, I am constantly coming into contact with people who do not uphold my beliefs. I am saddened by the way in which they view the world and 'measure' (or judge) other people. Yet, when most people subscribe to this viewpoint - that work/career, money and house make you and give you power to state your view and to garner respect, it is hard not to be affected by it too. I feel the loss of respect and lack of power. I do not command either, despite learning to be more assertive. Side note - except from my few close, special friends who actually see past all that to 'me' - the person with or without illness... my essence.

All the above troubles me. I feel pretty tortured by it lately. I have never wanted to be a person who wants to run away or to leave a life behind, but I increasingly feel like that. I want to have the freedom to be myself, to have respect, and safety of mind and person. The longer I have to endure being stuck, the more angry and frustrated I am becoming, and I hate that because it's not 'me'.

I realised that perhaps the only way I will ever achieve what I want, is to continue to pursue self employment coupled with trying to get myself AWAP. It's hard to accept that because, by its nature M.E. is precarious and relying on oneself for the financial income to move out of the family home, is tough... You never know how able you will be from one day to the next, so planning to earn a certain amount of money is very difficult. I need a more reliable and higher baseline - so that I can say: yes, I can do x amount of work a week. I am concentrating on this now. I am my own best hope.

Sunshine at last!

We have finally had a sunny, AND warm, day. In fact it was really warm: 21.5 C which is 71 F. To go from 10.5C/50F to this in ONE DAY, is crazy! My body was a bit like Homer Simpson contemplating a donut... mmmm, but then breaking his tooth when he bit into it... owww.

The thing is my body does not regulate heat well. I am either thyroidally frozen, or having a hot sweat/meltdown. Today I managed to be a bit of both: I was wearing a vest, a 3/4 sleeve cotton top, and a wool cardigan, and not hot, but my hands were exhibiting erythromelalgia. They are painful, as well as uncomfortably hot/swollen. Strangely, this winter I have not suffered from erythromelalgia type symptoms very much at all, I think for 3 reasons:

1. We had gas central heating fitted, so the temperature extremes are less (e.g. if I am in my room upstairs on my bed, and I go downstairs, I don't go from frozen to hot anymore).
2. I have been on thyroid medication for 1 year
3. I have been taking LDN for a while now and am at a high-ish low dose.

Whatever the reason, I am really happy I did not have had to deal with that all winter. Yet, I can't really understand why it was happening today, as normally this issue is linked to winter for me and would usually occur when I eat hot food or drink a hot drink (particularly in the evening).

Anyway, all that aside, it was wonderful to get outside for a wee while and to see some sunshine (through my sunglasses). I hope the weather continues like this as I want to plant some seeds in trays for salad and get my wheatgrass and sprouts going. I am still battling a massive list of tasks to do, but I got quite a few done today (overdue emails, ordering something) and that feels good.