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).