Increase to 3.5 mg & General Update (can't think of a title!)

Mango

As of  27th March, I have upped my Low Dose Naltrexone daily dosage to 3.5 mg. I waited until then because I had my last class that morning before the holiday break, which gives me 3 weeks before I have to attend a class again - enough time to get over any side effects, which experience has taught me I have to allow a window of time for... just in case.

I feel good about this change, mainly because I honestly don't think I would have managed to do the things I have done since the beginning of the year, had it not been for LDN. I have really had my ups and downs with this medication, as documented in this blog, but overall, there have been enough changes that I am still aiming to get to the so-called optimal dosage of 4.5 mg. When I look back to how I was before I took it, I was incapable of doing much at all - my life had become majority housebound, with the odd interlude where I pushed myself and ended up regretting it because I became even worse after whatever it was I did.

I think it is fair enough to say, and worth pointing out, that I am by no means suddenly 'well'. I am not saying this because I want to wallow or be some kind of sickness martyr or anything... but because concealing reality would be a total disservice to anyone reading this blog who ends up trying LDN and has the M.E./AI thyroid disease combo. The LDN seems to have gotten rid of a lot of the thyroid apathy, although when things are bad (and I am feeling very sick), it does have a tendency to surface (so it's not totally gone, just a lot less than it was before). The result of this is that I feel more inclined to try things; I feel more positive because a. I am trying things and b. most of the time there seems to be some glimmer of hope. The upside of this - a knock on effect - is that I am feeling less anxious because I am able to interact more with people and do more 'normal' things, so my confidence is coming back, which is beneficial for my adrenals (less adrenaline bursts due to stress/anxiety).

I do seem to have more stamina, in general, although I am still having to be very careful to energy manage (and frequently failing due to being required to do stuff that I cannot just not do). My sleep is a lot better - the best it has been in ages as, unless I am dealing with my sinus issues, I get a reasonable number of hours of solid sleep at least a few times a week. I also dream conistently when I do get the deep sleep, whereas before, I had stopped dreaming and then I would suddenly get a bout of dreaming, but all the dreams would be 'psychedelic' and stressful - very unrestful! I feel that cognitively, I am coping somewhat better. I still have brainfog and brain fatigue (especially with my language learning - I overload my brain and suffer for it), and I find if I over focus on one thing - like say learning new words, I seem to lose the ability to do other things, but the fact is... I can read a page without completely zoning out far more frequently than before. I also think I am remembering a lot more of what I am learning - I have really struggled with memorising. Hmmm... I am going to have to think of other things and write them down. I don't know what else is going on internally as I have not had any blood tests recently or just prior to taking LDN... but suffice to say, I feel it is doing 'something' and currently that is better than nothing.

In spite of all these welcome changes, I am still struggling with my life. Things don't magically get better overnight - well not for me, yet... or maybe not ever... who knows?

I am finding it hard to be unemployed (although I am technically self-employed, I have not had any contracts or freelance work for a while now, so I have not earnt anything). I am totally financially dependant, and that is so hard for me. I feel quite worthless a lot of the time because unfortunately (I have learnt) that so much respect in life is garnered by being employed and/or earning money. The desperation I have felt, I would not wish on anyone. I just feel so stuck. Everything I want to do requires a level of health (stamina, energy, bodily function) that I just don't have, and even if I have some more than I did due to the improvements, I don't have the consistency. I cannot rely on my body. In the past, I have thrown caution to the wind and just 'gone for it' with various things like studying and working, but inevitably, after the adrenaline runs out, I crash and end up bedbound/housebound and in a worse state than before.

Now I am more realistic and I feel I cannot afford to get worse, because I want to move on... not keep going back to square one, then slowly climbing up, then going for it, then going back to square one and so on. The reality is, I am also no longer prepared to work in a job which I do not enjoy/does not stimulate me. The way I see it is this: if I am going to work and accept the implications that has for my body/health, then I have to do something that gives me some passion, that stimulates me and that relates to things I am good at and interested in. Previously, I have just taken any old desk job - totally unrelated to my interests, my education and my strengths. This has resulted in me working very hard, for low pay and being very unhappy in the 'soul'-way... because what I have been doing has been at total odds with my self.

Unfortunately, most of the things I am interested in require standing. Standing is a BIG problem for me - I believe due to the whole tachycardia/POTS/low BP/veins issue. I find if I do go out (say to a garden centre or some kind of store or whatever), if I am required to stand - I get very sick and as soon as I feel that 'certain feeling' I need to go home/get to the car... or else lie on the ground. It's annoying/frustating/scary. So one thing I have been working at recently is trying to increase stamina/standing time and I am going to start gently working at increasing my core strength. I pretty much lack core strength in my lower back/abdominal region - partly due to the inevitable deconditioning and partly because I had an operation when I was younger that sliced my pelvic wall in two and despite a lot of work, my muscles have never recovered. I also must remember to drink more water - I was doing that for a while and it did help, but then I forgot... duhhh.

While I was thinking deeply about my life and where it is heading, I made a decision to not renew my website's hosting plan. I previously had it set for a yearly deal (slightly cheaper than monthly) which included a domain name. Anyway, I have totally lost all enthusiasm for the business - it was not making me any money and I had half wound it down with a view to overhauling it and redesigning it. I had redesigned the site, but needed to rewrite a lot of pages and add new content, and I just lost the desire and motivation. I think this has been compounded (as for a lot of M.E. people) by the lack of energy. When you have so little, you really have to use it wisely, and I suddenly realised, that in addition to me not really feeling the desire to do all that work, I also knew it would take so much of my precious energy and I didn't really have enough to do that AND get on with other projects. I actually feel better now I have decided to let it go. I want to concentrate on the new things I have been doing and I feel a fresh start is much needed.

I am still recovering from the flu and I currently have the sinusitis battle going on, which is quite draining. I am quite fed up with the weather, and the lack of spring. It's so grey outside, none of the trees are in leaf and those that have buds seem to be stuck at the mini-bud stage. It is also really cold! We had snow and my dad has had the two open fires going every day in addition to the central heating. Mum and I have been filling the house with flowers to cheer us up.

One idea I had recently that I implemented is Project Friday. Okay, I admit I just made that name up, but I decided that on a Friday evening I was going to do/finish one thing that I have been putting off. So... one week I altered a wig (to make it smaller), washed it, cut it into a bob and styled it. That was a bit much really... but it was good to get it done. Then another week, I finished decorating the bunting my sister gave me about 2 years ago - for my birthday. It was bunting that was plain calico and you had to decorate each triangle with a motif or fabric. I had done 2/3s of it, but then it just sat there, waiting for me and I finally finished it on my PF evening. I had decided to mix it up by doing alternating motifs and fabric triangles. Each triangle of bunting has a different decoration on it - I shall take a pic of it. So the last 2: I did a felt and fabric heart with contrasting stitching in an applique style, and a triangle of fabric with ribbon around the edges and contrasting stitching. This Friday (tonight) I am writing this post. :o)

Lastly, I celebrated an anniversary on March 24th - the first year anniversary of bringing my beautiful Mango home. Mango is a dwarf parrot, a lovebird, who I rescued on March 24th from a poultry auction. He was an aviary parrot - totally wild. Over the past year we have both worked very hard at trust and taming... he is a completely different bird now.

He does have a 'wife' - Tzippy - who I got for him in August last year. She is hand-reared, so quite different to him... and she has taught him, and me, a lot... which has definitely helped him adjust to the home life. 

Tzippy looking at a picture book

Mango catching his breath after a fly

Upgraded cage after getting Tzippy

Why it's hard to have plans when you're chronically sick and I feel marginalised

For me, one of the hardest aspects of living with chronic sickness (particularly M.E.) has been the difficulty surrounding making plans. It doesn't matter whether they're short term, medium term, or long term either, they all have to be 'subject to change'. The problem with plans is that ideas and intentions set in stone do not co-exist well with the fluctuating nature of chronic sickness such as M.E. and other illnesses. Of course this has an impact on my life in a way that is so hard to quantify and describe - yet it is far reaching.

Recently, as I have started to talk about here, I have been deeply thinking about my future: work and career, relationships (both friends and love), children, housing, my current family... So much of my thoughts about these things are dominated by my resignation to the fact that I can't make plans...

I have tried and tried, and I feel as if I constantly hit a brick wall. I tried so hard at one point, that I feel as if I burnt out my own soul, to the point where not an ounce of desire or motivation was left, just an empty shell of dreams. No one can accuse me of a lack of action in previous years, yet I find myself accusing my 'self' as if I have let 'me' down. I feel my lack, and then I feel guilty for feeling it because I have a bed, a home, food, clothes and things that people the world over struggle for daily - just basics - and I have even beyond that. Yet somehow in this first world country, having the basics and more stands for nothing when you did not achieve it or earn it, and when it is not topped with a partner/husband, children, a house/car/tropical holidays. It does not mean anything. Meaning is given to achievement, to accolade, to titles/prefixes/letters after your name, to being able to state the make of your car and the names of your children, or the carats of your diamond and the value of your property.

At the same time, I am aware that there are other people like me, and there are people who even if not like me do not put so much (or any) stock in these aspects when defining a person's worth. Yet those people are hard to find. I am not surrounded by them. I live in an affluent area, I go on FB (the spawn of the devil) and I see what I don't have, and then I lie awake at night panicking... wondering how I can be here, in my early 30s, with a life the total opposite of what I wanted. It is almost like a cruel joke, where I was offered a wish and somehow accidentally wished for what I didn't want.

I am left feeling as if I cannot move forward, because all forward movement requires an assumption of health or energy or ability, and I just don't know what the next 6 months will be like, or the next year or any useful amount of time. All plans are risky and I feel so much pressure to be well enough if money is involved in making those plans. I want to retrain in a vocation, to be able to work a job or set up my own business, and to be able to 'live' and not just exist, as I do now, lurching from one episode of pain, fatigue, non-working body part, to the next. I don't know what is physically too little and what is too much for me. Even if I knew, how can one fit the ways of the world to one's sickness schedule or one's limitations? You can't. There is no place for me.

Looking back, I remember facing this at college. By my third year, I was wailing on the phone to my friend in Wales (a way away from London -no help!) that I just couldn't see how to do it (the overall studies, the living by myself, the walking/movement required to get myself where I needed to be, to procure books and to work to save for a computer on which to write my dissertation) as I was falling apart at the seams. At the time, I was frightened and felt stuck. I felt no hope. I just took a day at a time, ploughed on and eventually finished a lot sicker than when I had started. Was it worth it? I don't even know now. I always believed that I went to university to 'read', to better myself, to become more educated, not to find myself employment - the emphasis on self improvement rather than a glittering career at the end. I did that, I got that and I came out the other side with an inquiring mind, with a depth of knowledge that I felt was worth the effort it took to acquire. When I think about it now, I just don't know... It hasn't gotten me anywhere because no one cares about my education or my mind/brain, because the body doesn't work the way a body needs to work in order to fit into society.

I feel like that now, except all my friends are in different places to me - not just physically, but mentally and lifestyle-wise. I am like the maiden aunt, the verging-on spinster... Not because I chose a career over another type of life, but because sickness grabbed me and made a choice for me...

Meanwhile, I keep making plans. I just don't know what exists if I stop making plans.