How to Keep Busy and Stay Sane When You're Chronically Sick - Mindfulness?

Recently, as in the past couple of weeks, things have ramped up here. This is partly because I have gone back to class (and started a new one), and partly because I also had a couple of appointments and various things that needed attending to. As I have written before, managing this type of situation is quite difficult or challenging when you're struggling with chronic sickness. I am surprised and pleased to say that I think I have been doing quite well! I shall review this at half term, and see how I am managing once the culmulative effect occurs - hopefully things will continue to go well health-wise. I think when you have something like M.E. mixed with other health problems, it's the little achievements and triumphs that stand out - for me to even do any class/es is nothing short of a miracle, when you consider that a year or two ago, I couldn't even leave the house consistently (so couldn't plan to do a thing).

Green juice anyone?

At the same time as being quite pleased with my progress, one of the things I have been struggling with is my anxiety levels. I would like to think that without chronic sickness, I would never have suffered from the anxiety that I suffer from. Pretty much all my mental health issues relate back to being ill. I get very anxious, apprehensive and nervous about new things because I worry that I won't be well enough to manage, or that I will be too sick on the day, or that I will go somewhere by myself and then collapse or be too sick to cope and what will happen to me... and those kind of anxious thoughts are self-perpetuating, so once you start down that road, it only gets worse! Some of it is probably unfounded, but some is founded in past experience. As one M.E. blogger wrote in their blog, when you become unable to reliably and consistently do things, you start to let people down and they lose trust in you. In my case, I lost trust in myself. I don't really trust my body to be there for me in a reliable and consistent way, because it generally is not. Building a better relationship with my body is a WIP (work in progress).

Another aspect of the anxiety is that because my life is unconventional for someone my age, people judge me. Ever since I got sick as a child, I have been negatively judged... by my peers, their parents, my family's friends, random family members... work colleagues, perfect strangers... and the big one: the medical profession. When you experience the criticism and judgement from a young age, it's formative... it starts to form part of your world view. This became a problem for me because it made me socially anxious. I went from being a confident, outgoing child/person to someone who struggles to cope with socialising. Of course, when you add on how sick you feel, that makes socialising even less appealing and my solution has been, to some extent, to avoid. I found it easier to remove myself and avoid social situations than to have to be assertive and end up rowing/having cross words with whoever it was who thought it would be a good idea to judge/criticise/invalidate me.

As I knew this was a problem, I started to tackle it again (I have bouts of facing it) by signing up for courses where I would have to walk into rooms full of strangers and somehow manage/cope. At least one of these courses is profesionally important for my career development, so there has been a real motivation to actually manage to do it. In doing so, I signed myself up for a big bout of anxiety... you have to almost go through it, to come out the other side. So after I experienced this awful anxiety from Sunday/Monday through until my first new class on Wednesday, I decided I needed to do something more direct about it. It felt very out of control and unpleasant to be so worked up about something, that should not be so stressful.

I was wondering what I could do to help myself to become more confident in my own abilities and to be less reactive on a sub-conscious level about the things that I find difficult - new situations, talking to strangers, using the telephone... anyway, aside from deciding to challenge myself to face them rather than just avoid, I went to Long Melford for the afternoon, and popped into the bookshop there. There was a shelf of books about various, I guess, self-help and religious themes, and one stood out:

http://www.amazon.co.uk/The-Mindful-Manifesto-noticing-stressed-out/dp/1848508247/ref=dp_ob_title_bk

It has mixed reviews, but so far I am enjoying it. Mindfulness is not a new concept to me, but is also not something I have managed to integrate into my life effectively... yet. I am working on this area now. I also bought another book along the same theme, which I can't remember the name of, but will read after this one.

General update:

For anyone following my LDN journey, I am still taking 3.5 mg of it and will be looking to increase that in early July. I would like to increase earlier, but I daren't because I am committed with studies until then and I really need to pass the course I am taking.

I am still taking random supplements when I remember. The best one is high dose Vitamin C, and also Vitamin D too. I really need to take the Vitamin D because not only have I been severely deficient in it in the past, but when I started trying to go in the sun without any sun protection for a bit (to allow me to actually get some Vitamin D), I ended up with a lesion on my face!

Another reason I think I have been feeling a bit better is because I started juicing again: green juice and eating a lot of salad, plus some 'slaw' and fruit, as I need to increase my raw vegetable and fruit intake again. I find that it does make a difference to the way I feel, especially the juice as it is quickly absorbed.

I am debating about whether to try the Bob Beck protocol, but at the moment I am holding out because I have a feeling that it would make me a lot worse before I started to feel better, and with the things I am committed to doing at the moment, feeling worse would be a disaster. The other thing that concerns me about it, is how I would take LDN. You are supposed to come off all prescription drugs (thyroid supplement is okay as it's a hormone) while doing the protocol and be careful about consumption of various foods. I have a feeling I could keep taking LDN if I took it straight after one of the things you have to do, but I need to check into that. I would like to give it a try, as some people have had good results with this type of protocol, but I am also conscious about not making myself permanently worse - for me, my current baseline as it stands is bearable, but not over-useful... and if I were worse, I would struggle to do anything. As my aim at the moment is to go back to self-employment, and run my business, I really need to aim for more ability, not less. So we shall see...

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.

Sunshine at last!

We have finally had a sunny, AND warm, day. In fact it was really warm: 21.5 C which is 71 F. To go from 10.5C/50F to this in ONE DAY, is crazy! My body was a bit like Homer Simpson contemplating a donut... mmmm, but then breaking his tooth when he bit into it... owww.

The thing is my body does not regulate heat well. I am either thyroidally frozen, or having a hot sweat/meltdown. Today I managed to be a bit of both: I was wearing a vest, a 3/4 sleeve cotton top, and a wool cardigan, and not hot, but my hands were exhibiting erythromelalgia. They are painful, as well as uncomfortably hot/swollen. Strangely, this winter I have not suffered from erythromelalgia type symptoms very much at all, I think for 3 reasons:

1. We had gas central heating fitted, so the temperature extremes are less (e.g. if I am in my room upstairs on my bed, and I go downstairs, I don't go from frozen to hot anymore).
2. I have been on thyroid medication for 1 year
3. I have been taking LDN for a while now and am at a high-ish low dose.

Whatever the reason, I am really happy I did not have had to deal with that all winter. Yet, I can't really understand why it was happening today, as normally this issue is linked to winter for me and would usually occur when I eat hot food or drink a hot drink (particularly in the evening).

Anyway, all that aside, it was wonderful to get outside for a wee while and to see some sunshine (through my sunglasses). I hope the weather continues like this as I want to plant some seeds in trays for salad and get my wheatgrass and sprouts going. I am still battling a massive list of tasks to do, but I got quite a few done today (overdue emails, ordering something) and that feels good.

Paying for it, but so worth it!

I made it to meet my friend - not only was it a very long day, but it also involved walking and stairs...

Millie

My optimism (reading this blog I probably don't sound optimistic, but IRL I generally am) was at an all time high. I guess my faith in LDN and Nature-Throid and vitamin C et al. was also up there. I really didn't think that this trip would leave me in such a state. When I got back, I felt exhausted and ready for bed, but the next day... wow! I woke up and I couldn't move. I lay there feeling my bones and muscles in such pain, and I eventually managed a hobble. The worst part has been the exhaustion/fatigue - on a scale of 1-10, I have been 9 or maybe even 9.5. Basically just shy of: I can't wash myself/go to the toilet.

In fact, I should really create a wash-o-meter for measuring how well I am. Some people get depressed and slow down their personal hygiene attention. I get less able AKA sicker and I reduce my shower frequency. Not good...

So, I am adjusting to this 'level' and reminding myself that it too shall pass... It has to right?

The good part about the whole thing is that my friend is so much more like me than my college friends; it was a massive relief to spend time with her again. In her presence, I felt validated and less alone. I felt that I was not so isolated and that it is okay to be different and to have priorities and a lifestyle that differs from the rest of society (regardless of whether it is due to being sick or not). There is/was comfort in the solidarity of sick-buddies. I think the main thing I really appreciated was that I did not feel judged, or at risk of being judged. For me this is a big thing, because for so much of the time since I became sick as a child, I have found myself being examined and criticised and judged by friends, family and society in general. As I have gotten older, I have learnt to cope with it better and I have recognised it is a major trigger for my anxiety. To be able to be around even just one person who is not judging you and you know that, is one of the best feelings in the world.

As a result, I have come to the conclusion, once again, that sometimes the benefit outweighs the physical cost. For me, the mental benefits of being around someone more like me are immense, and as I have been struggling lately
 to cope with my forced-upon-me circumstances, I just feel that even feeling so much worse, was worth it.

How to get things done?

One of the aspects I have found very challenging about being chronically sick is that it impedes my ability to get things done.

What I look at day-in-day out = The View From My Bed

When you are first ill, you are in the acute stage and probably don't even know what's wrong, so you abandon things - nothing matters, except figuring out what is wrong and 'sorting it out' AKA getting cured.

Eventually, at some point, if you are sick for years, all manner of things need to be done. You find yourself in a kind of 'backed-up' zone of all the things you have been too sick to attend to. This is especially true if you live alone, or even if you live with someone else, if they are not your partner then... things still need to be getting sorted out...

I have a list as long as my arm... actually longer, of tasks; some of them are mundane, routine, boring and others are more entertaining. I tend to pick the latter over the former - when you are going to use precious energy, and cause yourself pain and worsened energy depletion (fatigue), then the nice stuff comes first. Unfortunately, try as I might, this list does not seem to be getting any shorter! As I get things checked off, my brain slowly starts to remember other things to add to the list. It is beyond frustrating.

Given the fact that I have had the flu, and am still recovering from that, plus battling the ongoing sinusitis, I pretty much went back to my 'acute' state and abandoned the list. I definitely needed to do that. The downside being that now I am drowning... mentally mainly, in the awareness of what I must conquer... all these chores and projects. For example, I need to order an under-duvet-cover to protect my duvet. This has been on the list for a while. It requires firing up the laptop, locating such an item for a good price, finding a credit card, entering all the info (I hate that part!), and completing the transaction... I find that takes me so long, it puts me off doing it. Another example: my desk needs clearing and dusting, but I know that doing so also means I will find lots of things to file, which actually creates another job!

So all these chores, are just extra chores, outside of the normal ones... and I find it hard enough to do the normal ones - so I still don't know how to get all these things done without making myself worse or driving myself crazy!

Anyway, aside from that issue, I have been slowly doing more again. I am back on high-dose vitamin C, Acai capsules, and obviously still taking the LDN. I need to restart multi vitamin/mineral as well as vitamin D. I feel better for trying to do things, because I realise that I get so bored, I become depressed. On Friday I went with my mum to our local market town, and we browsed a bit and had some lunch, before buying a few groceries. It felt so good to get out - I had 'cabin fever'. Problem is, I feel so depleted of energy now and I was having those POTS standing symptoms while looking at stuff in shops (standing).

Today, I have been doing a few 'tasks' from the aforementioned list and resting in-between because tomorrow I am going to meet up with my friend, who I have not seen for years (we were both busy working/studying and then being sick) who, since I last saw her, has developed M.E.

Life Crises & Heart Rate Monitors

One of the themes I feel constantly repeating itself in my life the past year or two is the feeling that I am emotionally having some kind of early life crisis. I am not the only one. Google reveals a whole forum devoted to this topic. In my case, I can document the gradual meltdown back around maybe 10 years, to when I became aware that my 'peers' from when
I had been at university were suddenly diverging dramatically from the course my life was on and I was left, isolated... stranded on my own island.

Despite having to be a bit different at university (regarding my disability - certain accommodations were made), I was generally able to keep up with my friends and to blend. To the point where there were large chunks of time during which I was able to feel part of the majority, and not overly defined by the M.E. and other health issues.

One of the reasons I have sought to start blogging again and to connect, via blogs and reading Phoenix Rising forum, with other PWME and PWCS is because living on that island is really tough. Part of me can cope really well with the physical limitations, the pain and the frustration; however, managing my own emotional and mental health has proved far harder. There is no NHS help - no counselling, and to be honest, really who can understand except others in a similar situation?

I feel so incredibly isolated these days. I would be lying if I said that going through childhood, through teenage years and becoming a young adult with chronic, debilitating health conditions has been something I have not emotionally struggled with. I have frequently keenly felt the distinction between me and my peer group - the things I cannot do, cannot have and cannot be. At times I have coped well with it, but more often than not, behind the closed front door, in the privacy of my family home, I have been disintegrating... There is no guidebook, no magic pill, or special words to take this hurt away or to make it better. There is a point where you take it inside yourself, because you cannot express it to your nearest and dearest, as it hurts them too much. They are hurting too. They are helpless about this situation, just like you are. So the hurt gets swallowed, and it sits there, eating me up. Most of the time I suppress it and lock it up safely, but sometimes it comes out and it hurts me again... because...

My life is extremely different from the majority of my peers. I find it hard to relate to my friends who are working, settling down and having children. I have become a realist. My dreams of having children are starting to become just that: dreams. I know of few women with M.E. who have had children post diagnosis. Of course there are some, but they are not the majority. There are so many considerations with having biological children when you are suffering from all these health problems. Not just a healthcare responsibility to yourself, but to the child. It is a massive decision that I believe (just my opinion) should be consciously made after much thought/research. Even from an adoption perspective - children require stability and energy. M.E. for sure does not naturally lend itself to either.

I was discussing this with a friend (who does not have M.E.) and I pointed out to her, that the conscious commitment of another human being (a partner - husband/wife/BF/GF) to sharing their life indefinitely with someone who is so sick, is a massive thing. My blood relatives had this situation foisted upon them; it sucks. Yet, to have someone who is not your blood... who is not linked to you, make that commitment to go through all these things with you and to be voluntarily impacted and restricted by them, in many ways just as you are, is enormous! Finding that person is hard when you are sick and partially housebound or housebound or totally bedbound. Your options for socialising/dating are severely limited or zilch.

I don't even know if I feel comfortable asking someone to do that... to commit to this life.

I want to be happy for my friends, to share in their lives and their joy. Yet, to do so is so hard and so painful, because it reminds me of everything I don't have. I am failing at it. My instinct is to shut myself away, and I feel that makes me a bad friend. I don't know how I can find a happy medium, without feeling bad/upset/stressed out.

I am just grateful that I do have some plans. I am focusing on finding ways to do things I enjoy - at least a little of the time. I am concentrating on learning new skills, and in doing so increasing the chances of me earning some money in the future. One step at a time.

In other news, I have been looking at heart rate monitors. I don't really have the money to get one, but am thinking I will get one at some point - maybe after a month or two. I was reading a lot about their role in helping M.E. sufferers to conserve energy and to pace, by not going over their anaerobic threshold. It makes sense to me, as I always have the feeling I am overdoing it by doing even simple tasks, and I know there is heart involvement. So this might be a useful tool to try. The downside is the cost and also trying to figure out which one is the most appropriate one for me given my budget.