When the Patient Becomes the Caregiver

First off, good news on the LDN (Low Dose Naltrexone) front, my reaction to the dosage increase has gone and I am stabilised again. I also think that this time my reaction was also shorter than before. I am at 3 mg now, so will stay here until the next holiday in Pesach/Easter time.

The bad news is that my mum who is my primary carer, has come down with a very nasty case of some sort of flu/bug thing. Suddenly our roles switch as she is really sick - sleeping or half conscious, needing liquids/food/medicine and help with bathing etc. Of course me being me, I get on with trying to fulfill the nursing role, but it is so hard when you, yourself are sick already. The stairs KILL ME - seriously. Normally I go up and down them about 4 times max in an average day, which in itself is amazing and pleases me! Not so when 'caring'- I'm up, down, up, down, and it takes its toll - I also had to do the washing, which I don't normally do any of as this is one of my mum's chores.

On top of this I am so paranoid about getting this infection myself. Basically, if I get it, I am snookered in terms of my classes. I do actually have a sore throat developing/mild cough and I feel a bit weird (more weird than normal). My legs feel odd, very odd. Anyway, I am taking my vitamin C, echinacea and multi vitamin/mineral, and hoping that my body fights this off and I magically feel better.

I think this issue of what happens to the carer and their charge when the carer gets sick is so difficult. I feel responsibility towards my carer because she has helped me all these years, and I know how it feels to be ill, vulnerable and, I guess, needy. Yet how one can repay the kindness is almost impossible when you are still ill. It saddens me that I am not better able to cope with this, and yeah, it's not the first time I have had to be the carer, but I still have not figured it out.

Increased the LDN

As of Valentine's Day, I have increased the LDN to 3 mg, after I realised my schedule allowed enough time to die quietly if necessary, following the increase.

Friday morning I thought I had gotten away with the increase with no ill effects. Delusional as usual haha... Alas, no, that would be too good! To summarise, I am having reasonable days followed by the feeling of a 'plug being pulled' late afternoon. Suffice to say, I am back in bed ASAP when that happens. I feel really bad during this period of time; goodness knows what is happening inside me!

One must be grateful for small mercies. I appreciate even having a slightly better day, and over the past few months since I started taking LDN, I have definitely been attempting more than I have done in the last 3 or so years. Some of my attempts have been successful, and others not so much. I still have my days of wondering what purpose my existence serves, but my optimism/positivity baseline has definitely gone up. I think this is because as I have felt less apathy and a little more energy, I have been trying more experimental exertions and I am buoyed by having some success when I do try activities. I have gone from having virtually no days where I could do much, or anything at all, to having some days where I can do one of two things.  This is happening each week; I am getting at least one or more days where I feel like that, which is great!

The brain fog has been an interesting one. I had it really badly this past week, and then I came down with a stomach bug, that seemed to have taken a while to come to a full head. It seemed as if, while I was coming down with that bug, my brain was even more taxed than normal. I had great difficulty functioning even with small and simple tasks. I would like to think that LDN has improved my brain fog in general, but it is still early days and I would be lying if I said I am not having bouts of it quite badly. Maybe some of this or all of this has to do with a gut connection?

LDN giving me any positive results does come with a responsibility I need to place on myself... To be mindful of not overdoing it. I have mentioned this before, but even after 22 years of this disease, plus having learnt energy management and pacing, I still find it difficult when I feel glimpses of being a bit better, to not start doing all the things I know need doing or 'await me' and to continue to at a slower pace. It goes against the human instinct or desire.

One area that LDN does not seem to be making any inroads into is pain. This is disappointing.I has mistakenly assumed that if other things were better, this would lessen too.

I shall keep making notes of my LDN experience for my own reference and maybe it will help someone else too.

Still haven't increased LDN

I've been stuck at 2.5mg Low Dose Naltrexone for some time now. I have one more week before half term, so I have decided to wait until then to increase. I am going to make a decision about increasing once I know what I may be doing during that week off. The big no-no for me is going out - I can't increase if I have to go out of the house, that is unless I am going somewhere with my mum. If I go places with mum, I can easily collapse and go home... And she doesn't think anything of it.

I do think that it is helping me, but not in a cure type way. It seems to be more of the case that it helps to manage symptoms - so maybe I am tending to manage to do more since taking it (and adjusting to the dose) than I was able to consistently do before. I am nowhere near normal or even my 'best' in the whole time I have suffered with M.E., but I have an inkling that taking it is better than not taking it, so I have decided to keep on it for a year and then reevaluate.

This week has been a strange one - half good, half bad. I have been struggling with TTOTM, and it makes me not only have excruciating  pelvic pain (endometriosis type), but also extreme, beyond even my normal, fatigue. So I literally forced myself to get up on Wednesday and go to my German class. I have a bittersweet relationship with this class, as I generally love it when I am there,  but find it so tough to get to it (as it starts at 9.30 a.m.) and it is cognitively challenging for me. I was pretty 'out of it' this last class. I literally wanted to lie on the floor, but I got through it and made sure I rested as soon as I got home.

Yesterday was my hairdressing class. I found that while I love the subject matter, this week the class was hard for me. I was exhausted and I didn't feel I did so well. I am much slower than half the class, and while I try to not be bothered about it, it is hard when everyone is doing other stuff and I am still completing the first task!

Anyway it is over now and I can pace myself until next Wednesday.

So the good part is this - I finally reconnected with my art! I have been unable to do any art for a long time, because of a lack of energy, lack of confidence, and lack of creative flow. The other day my mum cajouled me into having a go. I will share some of my sketches/drawings another time,  but suffice to say I had 3 unpaid commissions as a result of my latest drawing. Doing them will get me back into the swing of things, and I hope I may be able to keep up doing art now I am taking the LDN.

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.