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

Argh! How long...

... does this go on for? I am still suffering with sinusitis and recovering from the flu. Admittedly sinus issues, allergies affecting my sinuses and Trigeminal Neuralgia are chronic issues that I deal with for vast portions of the year, but... but...but this knocked me because it followed the bad flu... it feels like when you can't catch a break. I was merrily floating forwards in a chronic sickness forward way (as in: this is all subject to change at a moment's notice), or so I thought, and then this stopped me in my tracks. To be fair, I am feeling A LOT better than I was, but I still have the sinusitis making me feel yucky and it's so draining on the system trying to fight the infection.

So anyway, in good news, I am still at 3mg of LDN and I do feel that it is doing something. Underneath all the recent viral infection, I can feel a sense of a stronger baseline. I feel that at least I have stayed static for sometime, whereas pre-LDN I seemed to be progressively getting worse, which had started to scare me. There is hope there. I remind myself I am not even near the full dose yet, and so there is continued room for improvement. If a full dose of LDN enabled me to have even 10% more functioning than I do now, it would be amazing and I would be very grateful.

Lastly, I had to post this...

From http://quixoticmeblog.blogspot.co.uk/

 

I found it brought a smile to my face (perhaps that should be an ironic smile) and gave me a giggle. As the years go by, dealing with the skepticism and the less than helpful reactions becomes more normal and less unexpected. I feel that, as sad as it is that the M.E. community has to deal with these reactions, the impact they have on someone like me becomes lesser with time. I no longer need validation, and that enables me to be able to laugh at the absurdity of the situation and to own it instead of being governed by it.

The Flu

So after I wrote my last post, literally a few hours later, I came down with the flu. I have been sick ever since, which is around 12 days now. M.E. and the flu do not go together well. The body can barely cope. I just don't have the reserves to be able to fight it well. I have lost quite a bit of weight as I can't eat much.

I dread this. I have had this severe flu (guessing type A due to the severity) several times in my adult life. I literally got it every year when working. I realised all cases have been when I was doing more and thus exposed to more people and their germs. It really puts me off going out or trying to do things. I am OCD about germs as it is - I carry anti-bacterial gel and sprays and squirt my hands with it frequently while I am out and before I eat anything. I refuse to knowingly be around people who have flu or similar bugs; if I can avoid them I will - no offence, but I don't need to fight extra battles with extra bacteria/viruses etc. I have missed class for 3 weeks (stomach bug, and two weeks with flu), which is both upsetting and frustrating. I want to get on with these things - these small plans/victories in my life, and yet once again my body scuppers my plans. I am pretty fed up with being sick. It's bad enough trying to cope and have plans when you are chronically ill, but there really is no accounting for, or compensating for, having acute illness on top.