LDN Progress

I have stayed at 2.5mg of Low Dose Naltrexone (LDN) for quite some time. I am glad I did this and did not continue increasing. I really think it is giving my body a chance to acclimatise itself to this dose. The Vitamin C seems to be working well with the LDN. In fact, since taking the high dose Vitamin C, the bone crushing fatigue has abated. I am hoping this is not temporary and that if I continue taking it, I will not have deal, with that again as it was extremely tough both physically and mentally. I have been able to do more this week in terms of having more energy and, to a greater extent, cognitively being more 'with it'. I haven't really decided when to up the  LDN dose again.

Despite feeling benefits again, I do still have to rest and sit down for the majority of the time. The good thing being I can do more while seated. I have to go to bed early - well not early for M.E. people, but anywhere from 5 p.m.-ish onwards. Most nights I am in bed by 7.30 to 8 p.m., there is still a finite amount of energy, it's just more than before.

One area that LDN does not seem to be touching really is pain. I have chronic pain, and I am finding the more I am able to physically do from an energy/ stamina perspective, the more the pain becomes dominant. With this being the case, I decided to finally invest in a TENS machine and see if that helped me.

In bed buzzing myself with the TENS

I bought a pretty good model, so it was quite expensive - boo... being sick is so expensive. I received it yesterday and might review it on here. So far I have used it for back, shoulder, and back of neck pain. I have it on now and it is helping. One thing I have to learn to do is to relax my muscles as tensing them makes pain worse. I still have not figured out how to do that!

Congratulations to ME!

I feel the need to congratulate myself. Yesterday, I upped and offed, and took myself and a big bag of bits of equipment (see picture) to a new class. I was extremely hesitant about going to this class as the dreamer wanted so desperately to do it and the realist knew that M.E. and hairdressing don't really mix.

I was quite worried about standing, and also the 'arm factor', but there was little standing and what there was came in small bouts. It was doable. The arms, well they shouldn't be stuck out like a couple of chicken wings, but held close to the body, which helps to preserve energy and decrease pain/strain on muscle. Plus it's not like the scissors are dead weights or anything, so again it was doable. Whether or not wielding a hairdryer is as possible, I am not so sure!

The reality is that from a professional point of view, this direction makes sense. A wig maker with cutting, styling and dressing skills, is far more useful and employable than someone who can only ventilate or only make foundations (the wig cap/base). I am a big believer in adding skills where and when I can. You never know when they might prove useful.

Anyway, I am patting myself on the back for not letting my own fears get in the way of me trying new things. I do think sometimes with sickness, you have to try things and see if they work for you. It's impossible for me to know if I can actually physically do this, unless I give it a shot. Not being able to do it does not equal failure - I have to learn that too.

Of course today, I am PEM-sick. I feel like something the cat dragged in, but at the same time I can accept it because I got to do something I wanted to do, that was fun and social, and it is worth the M.E. aftermath. Pretty much today is ruled out as a 'nothing' day; I am lying on the couch, but I might actually go to bed.

I just quickly want to also talk about Vitamin C. I read on a forum the other day that someone was taking several things for the crushing fatigue that I has been complaining about and madly researching, and I noticed one of the things they were taking was high dose Vitamin C. Last year, I went through a phase of also taking Vitamin C in highish doses, and I remember that I felt quite a lot better in the energy department. So I went to the cupboard, fished out the Vitamin C and started taking it. I also have now added Acai Berry capsules, a probiotic, and a female multi vitamin/mineral to the mix.

Well, what a difference! Within 2 days of taking 1000mg of Vitamin C, I started feeling the crushing fatigue lifting. It baffles me in a way, because I don't really understand why it is so effective. I must point out, I take a certain type of the vitamin called Ester-C, which is non-acidic and stomach friendly. I take this one:


http://www.naturesbest.co.uk/ester-c-650mg-p411/

I am going to do more research into why this might be working for me. One noteworthy thing, if you take Vitamin C, it is possible your calcium levels may be affected. I am also already supplementing with Vitamin D, Magnesium and Calcium.

The Endless Search For A Cure or Remission

 Random Pictures Will Occur On This Blog - This was taken by me of the lake (Vierwaldstaettersee), Brunnen, Switzerland

Recently I was thinking about my endless search for the answer to my afflictions. When I was a child, I always assumed I would get better. If not today, then tomorrow and if not tomorrow, then next week or next month or next year. As I got older, I never lost that hope. It never occurred to me that I wouldn't someday recover and be 100% back to the way I was pre-M.E.

It was not until I was 19 years old that my conviction started to waver. I was supposed to be going on a 'year abroad' as part of my university studies. I remember thinking: "I can barely cope with getting to lectures, climbing the stairs in the library and dragging myself and my washing home on a weekend, how would I cope with having to move to a foreign land, with no support network and being expected to cook and clean for myself on top of doing my studies?". When push came to shove, the university college gave me medical dispensation from having to go abroad for the year (which was an integral part of my degree). The dreamer part of me regrets that, as I missed out on a lot of shared experiences with my close friends, as well as the opportunity to become semi-fluent in one of the languages I was studying. The realist in me knows that I would never have managed it and would probably have been flown home and have had to leave university altogether. As it was, by the end of the 4 year degree, I was so sick, I became completely bed-bound followed by being housebound for a while.

It was this experience that made me realise that maybe I would never be back to my pre-M.E. self. I started to consider the possibility that maybe this was as good as it would ever get. It was, and is, a scary thought to contemplate. It's over 10 years since I graduated, and over those 10 years I have had waves of searching for hope, for a cure, for a remission...

As a result of complete rest (I had a carer deal with my affairs, so I didn't even have to turn my mind to them), I did have a small window in the 10 years where I felt I was well enough to work. Funny thing is, when I look back I realise I was not well at all! It strikes me as funny, because I convinced myself I was well enough and I actually believed it. So much for positive mental attitude and all this stuff about if you believe something it will be or come true. The more I worked, the sicker I got. I had no other life than work, as I was simply too sick to go out or socialise, and all I would do is eat something, shower and go to bed. On the weekends, I used any energy I had to get my clothes washed and ready for the work week. I stated down the slippery slope and I really did myself a mischief! I would NEVER recommend this course of action to anyone with chronic illness, whether it be M.E. or not. If your body is already very sick, then you definitely do not need to add to the burden. Of course this leaves the issue of money/finances - I had to give up any independence, any money of my own and start relying on others. I do not recommend that either, but if you have to, I would opt for the latter rather than the former option.

Since this bout of working, I have not recovered. In fact, I think it is fair to say I have gotten progressively worse. It is emotionally painful for me and my mum (who has been my main carer all these years) to think and talk about this. I just wanted to be 'normal' and to be able to take care of myself like my healthy-ish peers. I hate being a burden to other people. In my quest for relief, amongst other things, I have tried supplements, dietary changes, better pacing, exercise, meditation, losing weight, juice fasting, the Hippocrates Diet and now LDN. My biggest success was the Hippocrates Diet and E3live. For that reason, I am going to try doing that diet, as much as I can, once the better weather starts. It is not an easy task to follow that diet - requires sprouts to be sprouted and wheatgrass to be grown and lots of juicing, but it did do something highly beneficial to me, so I will grit my teeth and try to prod my family into helping me and give it another go.

Interestingly, my body's reaction to both juice fasting and the Hippocrates Diet is to give me the equivalent detox reaction I have seen on television in people who are coming off heroine. We are talking about: severe sweating, shaking, puking into a bucket type detox. Bearing in mind that I have NEVER taking illegal drugs, I find the herx to be quite bizarre! It makes me wonder, what the hell is in me? At the same time, I find it incredibly reassuring that my body is doing something, and after I get through it I actually do feel a lot better (in less pain, less stiff). I almost want to induce more of that, even though it is horrible at the time, because I feel like it's the most response my sluggish body has ever given me since getting sick.

On the searching for treatment suggestions theme - recently a dear friend of mine suggested I look at the Bob Beck Protocol. I had not heard of this, so it has become one of my 'research projects'. I have also been reading Phoenix Rising a lot (they have the best forum I have come across for M.E.), and trying my best to understand and absorb some of the treatment suggestions. One of the frustrating things is that my brain finds it so hard to understand large chunks of text and scientific explanations. I was trying to get my head around the Methylation Protocol... ha! I felt like such a dunce. I have decided that any experimentation with Methylation will have to happen in July and August - class is over. I can barely cope as it is, and if a treatment gives me a herx/worse before better reaction, then I need to be able to deal with that at home.

Up & Down

At the moment I am truly up and down - day to day, and hour to hour. If I remember rightly, Friday was a good day for me; it was productive! I have my 'professional' life where I blog and write articles/ebooks about making wigs, alopecia, and issues relating to hair loss. I also do freelance writing, research, and online tutoring work. For a long time I have put this to one side, as I was unable to muster enough energy, cognitive ability and strength to attend to it properly.

Recently, since taking LDN, I had turned my mind to this once again. I decided to focus on my blogs, and to start getting them up to scratch. So this past week, I took some time to deal with old emails to my YouTube account. I am ashamed to say that some of these emails had been sitting there for 6 or 7 months. I tied up all the loose ends, planned some blog posts and set myself to the task. I also started to think about moving forward. I need to redesign my old website, and to approach things slowly and steadily. I think it is possible to be successful online, from a business perspective, with chronic sickness; however, I think it is better to do one task a day, and actually get it done. Whereas, my past approach was to rush at everything and try to do it all rapidly, which just resulted in me doing half of it and then crashing for months!

Of course, being that I threw myself into the task without thinking this through carefully, I did not pace myself. Predictably, I spent yesterday, and am spending today, with the most bone crushing fatigue imaginable. It does not help that it has been snowing a lot. Today it has snowed for over 5 hours, and it is not supposed to stop until around 14 hours have passed. I find snow tiring and very drying. I am so 'out of it' that aside from writing this, I am just stuck to a chair like a limpit to a rock, gazing at not a lot... AKA the wall, the fish, the birds, the dog... My own slippered feet: "hey feet"!

I am a bit tired of this... tired of tired, exhausted of exhaustion, bored of boredom...

So being me, I decided to Google: bone crushing fatigue, and there are a lot of thyroidites (my name for thyroid disease sufferers - sounds funky IMO) and others with AI diseases, and M.E. of course, suffering away... But like the thyroidites were saying, it's impossible to encompass the very depths of this experience, this feeling, in words. It just ends up sounding lame! It's the imprisoned in my chair, would rather wet myself than have to move even 1 muscle (hence staring straight forward), feeling.


so yes, I am still sticking to 2.5 mg of LDN. I was thinking, if push comes to shove, I will go back to 1.5 mg, as I felt quite good on that dose.

Low Dose Naltrexone - 2.5 mg - and M.E.

After my last post, I have been having a think. I have decided to reevaluate some 'friendships', and to make an executive decision about their true value. It strikes me that if it takes 10 units of effort to continue a friendship with a person, and they only ever give you back 4 units, then it's probably not that worthwhile expending all that energy. It sounds harsh, but I have come to realise that many people over the years have viewed me through a certain lens, and that lens is unflattering. Such friendships will always be uneven. My personality is such that I have to find people like me, who are tolerant and go out of their way for others (not tooting my own horn, this is just how I am and how life has shaped me). People I bond with are compassionate and empathic. Those people are less likely to abuse me and my good nature. They are less likely to view my challenges in life as purely weaknesses to be exploited.

Anyway, my struggle with Low Dose Naltrexone continues. I am at 2.5mg. I was talking to a friend who is also taking it. She does not have M.E., but does have other chronic health problems including Hashimoto's. We were talking about whether I feel I should continue. At the moment, I cannot distinguish what is M.E., and what is AI thyroid disease. It's awkward. Earlier on in this trial of taking LDN, I had the feeling that it was helping me. I felt more stamina and had bouts of being cognitively/mentally better. Around Christmas, I was managing so well and felt dramatically improved compared to now. Lately, I have felt quite horrible, which of course results in me being able to do less. This then leads to me feeling frustrated with my body and my life, which is never good.

I have come to the conclusion that not taking Low Dose Naltrexone will probably reveal that it was doing something and then I will regret giving it up. Plus, I have read that people with M.E. that stop it, go back to square one when they restart it - all those nasty symptoms I had as a side effect, which I do not fancy revisiting.

With that in mind, I have decided to wait until the beginning of February before increasing my dose again. It is possible I went too fast when increasing, and as my friend pointed out, when you have been sick for years, it may take far longer to get the same level of wellness as someone who got sick more recently. A good point indeed. Patience!

I shall, of course, keep updating with how I am doing. You never know, I might miraculously have   a dramatic upturn. I can hope!

Lastly...

No Poster Girl - http://nopostergirl.com - pointed out my lack of RSS feed. I have looked into it just now with a mush-brain, and apparently I do have one, but the signup link is really silly and hidden at the bottom of the entire page (duh blogger!). I need to fix this, and will get on to that in the next few days - from what I have read, it will take a bit of brain power. In the meantime, I do believe you can find my feed at this URL -> http://seekanswerswithme.blogspot.com/feeds/posts/default?alt=rss

Say what?

I just had the most ridiculous email with a friend.

Friend was talking about a lady who has cancer for the 3rd time in 11 years. Incurable cancer. I responded by saying how horrible that is and how awful it must be to know you have this 'thing' hanging over you but not know when you are going to die - because the cancer lady has been told she is going to die and it could be within 6 months or many years... No one knows.

My friend then writes back...

That... we both have decent health don't we? And... we must count our [healthy] blessings.

Say what?

Speak for yourself!

While I, clearly, count my blessings that I do not have the 'big C', I sat there honestly wondering what the hell people think is up with me... For example, why I: live at home, don't work, barely go out, am not married/don't have kids, can't donate blood, can't drive...

I probably leave the house maybe a few times a year to go further than my local town because doing so leaves me bed-bound for weeks. Last time I went further than London (in 2011), I ended up with a massive hole, AKA an ulcer, on my body from the stress it placed on my system.

The more I think about it, the more I blame the fact I have tried to do a few classes this academic year, and that this friend knows about it, for the total lack of understanding and sensitivity. Never mind the fact I had to give up one class because I did not have the mobility to be able to do it. Of course I never mentioned that to anyone! I mean who wants to tell people that? I am doing 2 classes this year, one of which involves standing, but as it is an ACL course, they will just have to put up with my disability and I will do what I can within the time allotted (which is what I did in my other class). I am a try-er. I try things. Occasionally they work, a lot of the time I overestimate my body and come crashing down with a huff because I realise what my mind/soul/spirit wants to do is usually at complete odds with my body. Grr!

It really astounds me when people show their total ignorance of what my life is like because I feel that their lack of understanding makes it seem as if I'm choosing this lifestyle. Then I start to wonder if it is my fault for not being more blatant about what is the matter with me. I am quite an open person if people ask me, but at the same time, I am not one to openly go on about the things that are wrong with me. I have always been conscious of not wanting to me a Debbie downer, or 'the sick girl'. Recently, I had posted/shared some awareness material on FB - POTs and chronic/invisible illness stuff. I always feel uncomfortable doing so - I really don't want to be 'the sick one'. At the same time, there was something liberating and daring about it... about being honest and real. I guess most healthy-ish people don't read it or look at it though. As my Arab friend would say: shame on them in their 'normal' bubble.

It irks me to think that people are of the impression that I am somehow cruising through life quite happily... dossing around, pain-free, full of beans... and just lazy, because how else or why else would I be where I am at now in my life unless I was: a. chronically debilitated by x, y, z diseases, or b. a bum? I find it amazing that anyone would think I have willingly taken the life choices to be in my position. If we are being honest here... I am scared of my future - as I am completely dependent on my parents and they are getting older. I cannot on a daily basis reliably run a house -> cleaning/washing, bring in money to live on, cook for myself, look after the pets, get anywhere that requires a car - without them!

I feel better for getting this out. Hopefully now I can sleep!

2.5mg

On Wednesday I decided to 'bite the bullet' so to speak and up my dose to 2.5mg. As I have said before in this blog, I am conscious of timing due to potential side effects and taking it on Wednesday enabled me to get the maximum amount of downtime before having to go anywhere.

I haven't posted for a bit and this is mainly for three reasons:

1. I started a new eating plan on Sunday - Intermittent Fasting on a 5:2 plan. This has taken up some time as I have had to adjust to that in the past week.
2. I am finding it hard to quantify what exactly LDN is doing!
3. Yesterday was my 'sickness anniversary' - 22 years ago was the day I became acutely unwell and my life has never been the same since. My life totally changed its course, and this time of the year is always a time of processing for me. I have feelings and thoughts that quite frankly only other people going through what I have been through can possibly empathise with me about. Seeing as there is not exactly a load of friends around these parts who are in my position, I retreat inside myself for a bit.

About number 2 -

So yeah, it's difficult! Of course there is that typical situation when taking a new medication or supplement, where you don't know how you would be if were not taking it. In my case, I feel as if I would have to be so dramatically better from LDN to be able to go... 'Yeah this is 100% working for me' - without question.

The last couple of weeks I have had a virus, PMS and then TTOTM (that time of the month).  All of this is typically straining on my body and this time around has been no exception. As such, I found that it was as if LDN's effects were being cancelled out possibly. Or maybe I would have been even worse if I had not been taking it... Who knows?

I have managed to get two nights of good sleep, and I do feel better for that. One of my concerns and issues at the moment is that I do not know what my thyroid is doing. For example, last night my heart rate was under 60 and my BP was lowish. When I lay right down my BP got very low  (which is typical for me) and my heart rate went up by 20 points. So, it's hard to tell! I had this crazy idea - well not totally crazy as some people do experience this - that I would take LDN and it would magically get my thyroid working and I would go hyper quickly and start to come off Nature-Throid. Whereas, I currently feel as if I am now not taking enough thyroid medication! I feel very fatigued, somewhat apathetic (mainly because I am so exhausted) and cranky because I am fed up with being sick and so dependent on others. It is taking me until about 2 p.m. every day to get enough energy to do anything and then I manage about an hour at the most before going back to staring at the wall/watching my birds/listening to others/watching a little TV or trying to read.

The complete opposite of what I thought would happen. I don't really understand that. If LDN acts on autoimmune thyroid problems to halt the attack, why does mine seem to going the other way? Anyway, I am going to take my heart rate when I am up and moving about and see how it is today.

Welcome 2013

I am still alive.

I have now been on 2mg for 1 week. I am 'hanging in there'. This past week has been strange, as I think I have been fighting a virus, thus it is hard to tell what is a LDN side effect and what is a virus fighting side effect.

My urge has been to sleep. I spent all of Wednesday in bed resting. I still feel I could sleep and rest. I hope that this is a good sign, a sign my body is trying to make up for lost sleep and heal some things.

It is interesting to get someone else's perspective on how I am doing. Last night I was taking my LDN, which led to my mum talking about it with me. I said that I have seen improvements, she said she was not so sure. She said that I seem to be up and down. I think it is very hard for her, as it is for me, to grasp what changes - if any - are taking place. Perhaps once I have my classes to go to, I can better assess LDN. I feel inside that things are different somehow, and I know I am definitely getting more sleep. My pain levels do seem down a little and cognitively, I have been feeling more 'with it'. I don't know if this is how I would be without LDN. I suspect not... I was experiencing a progressive disease without remission in the last few years.

I think that it is worth bearing in mind that, as far as I can understand, LDN is not really supposed to cure. It is supposed to stop disease progression, and if it does rewind you a bit to your former glory, that is a bonus. Therefore, where you were at disease-wise, may be where you will stay, but hopefully not getting any worse. For me, in some ways this notion is disappointing, though I knew about it. Having been ill for so long with M.E., I am far along the road in many ways, and adding in the thyroid problems and other health issues I have or have had makes for a lot of debility and pain. I have frequently tried to run with the herd in the past, and I sometimes feel I can be in denial over my symptoms and my body. It is very hard to be 32, and to realise 'this is it'... as good as it gets. I wish I had known about LDN 10 years ago, and been brave enough to try it. I can imagine the last decade might have been quite different for me if I had.

I must move forward though, as there is no use getting stuck in the past. At the moment, any improvement is good, no matter how small. I plan on increasing again next Thursday, as it will give me maximum recovery time before I have to go out of the house.