The Emotional Toll of Chronic Debilitating Illness

As is probably evidenced by my blog, I feel the emotional toll of being chronically sick is immense, and the longer I am sick, the more I struggle to cope with it. This week has been really tough in that respect.

One of my biggest issues is with my living situation. At my age, I really need my own space. I have my bedroom here, but it's not as if it's really mine. It doesn't 'belong' to me; as I don't own or rent the property. I felt this feeling increasing from late 20s to present. I have been unable to do anything about it.

There is the dichotomy - between feeling grateful and feeling guilty. I feel guilty that I am so distressed by my inability to have my own place, because I know I could be in a much worse situation (totally homeless or living in a third world country, and sick). I am grateful for what I do have; I always have been, and I give thanks to the Universe for this and many other blessings. Yet, the crux of this issue is that despite that, I know that with my education and my background, take away the sickness and I would have been in 'that place' that I crave. I would have most likely had a job, a good one, and earnt enough to rent or buy a place.

This knowledge coupled with feelings of being trapped, stuck and powerless, lead to total frustration. Not only does one feel frustrated and sometimes circumstantially depressed, but the emotional impact that this situation has on one can become leverage for those around them or those they come into contact with. For example, the precarious nature of one's dependence, becomes a 'verbal bashing' tool during conflicts or a bartering tool to manipulate the sick person with. That is not right at all.

In my case, while I know I am doing nothing wrong by not working, and that by not working I am no lesser a human being than others who are well enough to work, I am constantly coming into contact with people who do not uphold my beliefs. I am saddened by the way in which they view the world and 'measure' (or judge) other people. Yet, when most people subscribe to this viewpoint - that work/career, money and house make you and give you power to state your view and to garner respect, it is hard not to be affected by it too. I feel the loss of respect and lack of power. I do not command either, despite learning to be more assertive. Side note - except from my few close, special friends who actually see past all that to 'me' - the person with or without illness... my essence.

All the above troubles me. I feel pretty tortured by it lately. I have never wanted to be a person who wants to run away or to leave a life behind, but I increasingly feel like that. I want to have the freedom to be myself, to have respect, and safety of mind and person. The longer I have to endure being stuck, the more angry and frustrated I am becoming, and I hate that because it's not 'me'.

I realised that perhaps the only way I will ever achieve what I want, is to continue to pursue self employment coupled with trying to get myself AWAP. It's hard to accept that because, by its nature M.E. is precarious and relying on oneself for the financial income to move out of the family home, is tough... You never know how able you will be from one day to the next, so planning to earn a certain amount of money is very difficult. I need a more reliable and higher baseline - so that I can say: yes, I can do x amount of work a week. I am concentrating on this now. I am my own best hope.

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

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.

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.

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!