Sunday, 8 March 2015

You Don't Have to Read This

If I write the words 'lately I am struggling' it seems to me that I am always saying that.  Lately.  I am in pyjamas in bed more often than not and if I do get up and dressed I really don't much care what I wear.  I am mostly quite disinterested in clothes right now, though a couple of times a month I get the chance to go out and I admit I do want to look nice.  It takes a huge amount of energy though and after one outing I am back in pyjamas and bed for a few days.  I am too tired, too aching, too foggy-brained to care.  I sometimes am able to get up for awhile and doodle.  I write randomly, adding to my collection of un-posted blog pieces, mainly writing to release thoughts.  I may have a day where I work on the novel, writing for a couple of hours, but that is nearly as exhausting as an outing.  Then I spend several days wishing I could take it on again but I can't make my brain cooperate.  I re-read a bit and hate it, because I always hate it when I am tired.  When I have energy and want to write I feel enthusiastic, encouraged, I have plans, I know it is very rough but I know what I want to do with it.  When I am tired I just think it is crap and my art is crap and I look like crap so better just stay home and not be seen anyhow and maybe just eat junk because blueberries and omega 3s  are not exactly curing me.  Yes, living with a chronic illness can be a bit depressing and although I am a strong believer in being positive and I am instinctively a positive glass-half-full person, it does get to me and I would be lying if I said it didn't.  Because I write about living with ME hoping to help others cope with it, knowing they are not alone, I have to write honestly.

I take medication for anxiety and depression.  A moderate dose keeps me on a mainly even keel and it is typically a treatment used for people with ME.  Are people prone to depression and anxiety more prone to getting ME or is it that depression and anxiety are caused by ME?  That isn't really known but for the most part it doesn't really matter.  Because I have had the ME for so long, from around the age of fourteen or fifteen, I have some difficulty separating ME symptoms from who I am.  Because it is, for me and for many, a long term (chronic) roller coaster of relapses and remissions and adapting lifestyle during remission in an attempt to limit or prevent the relapses, I look to the periods of remission to remind myself of who I believe I truly am.  I look to the person who tries to emerge the moment I feel even slightly better, even if she is trampled down again quickly by the evil persistence of the illness.   What I consider the real me, is someone who is perky, bubbly, enthusiastic, positive, energetic, athletic, creative, full of life and love.  This, along with a portion of my cognitive abilities, is taken away from me during relapse and to some degree constantly.    Considering this, can I really criticise myself for getting depressed or for panicking about my ability to function?

I should be used to this by now, having lived most of my life this way, but it's rather like being teased, offered the promise and hope of recovery and then having it snatched away, repeatedly.  On some days I want sympathy, though on most days I don't.  Always, I want understanding.  It's difficult to write about it knowing that people who read this will feel compelled to respond with sympathy.  Then I feel guilty, as though I have begged for it.  And how do I respond?  What more to say is there really than, thanks?  I write this not for my reader friends who come to this blog for the cheery bits, or who I know are kind and caring and are going to offer sympathy and concern even though I have put them on the spot.  I write this for those of you out there whom I don't know, but who may also be living with ME or know someone who is.  I offer up my experiences because it helps to know we are not alone.  It helps to know others understand.  It helps me to know that even on a day when I lie in bed feeling like shit I might have something to offer.  Obviously, I wrote this on a day when I felt unwell and a bit blue.  I have selected it from the archives and posted it on such a day too.   I worried about how I was not succeeding at visiting the blogs of my friends as much as I want to.  I visited one or two and felt worn out.  I cannot keep up, as with so many things in my life.  I posted this and went back to sleep.


  1. My dear,
    it makes me sad to know, that you feel bad and I want to say that there will come better days for sure. Many years ago I had a similar (long) time with this depressive and sad days only wanted to be alone in my bad. Don´t wanted to see anyone and to listen and to talk to anyone. My "happyness" was to be alone and to head quiet and peace. I can´t say anymore what happened or what I´ve done but from day to day it was getting better and better and today I´m over it. Of course there are some singular days when I feel the same way but this period of time is not that long as it was years ago.

    send you all my positive thoughts
    and a long hug
    don´t stress you.. one day it will be better
    Dana :-*

  2. Does it sound awful to say I love this post?
    I am a glass half empty person, and when I see those who also struggle with chronic illnessess/disabilities seeming so positive all the time, I kick myself even harder for not being like that. I know you are more positive naturally than I but when we are feeling blue, we can all identify!
    Keep the tiny bit of connection going if you can. This is not written for me I know, but in some way I take comfort from it.
    I also struggle with posting as you know, and spend most days fighting bodily overload symptoms, be they sore muscles, nausea, tiredness or wiredness.
    I do understand the energy resources required to read and write on others' if they were all there in the room and you had a long conversation with each of them.
    It's lovely to hear from you whenever you can manage it, and I don't feel put on the spot to say this!
    i get the teasing of remission, when you think you can, and then you can't again. And I get the pain when you see others being able to without a thought or understanding of the gift that is. I get how exhausting it is to try and explain why you can't work over and over again.
    I am so lucky to have support in my family, and I know you do too.
    Snuggle up with your beautiful cat and wait this out, and rest. We will see you on the other side. I hope none of this stresses you more! Love, Jazzy Jack

  3. Hi Shawna,
    So sorry to hear about your struggles. I was reading this thinking to myself, how in the heck does she stear away from depression? And then I read a little further. When I had a cancer battle back in 2002 I could barely get out of bed so many days in a row. In fact, I was so wracked with fear, lack of hope, and just plain exhaustion, I didn't brush my teeth for 3 days in a row. A nice little dose of anti-depressant helped but like you I had to work at keeping my mind positive. I totally can think myself into a hole if I'm not careful even now. In fact, it starts every morning for me. If I don't catch it and turn it around I'll be in a pissy mood by 10:00am.
    I send you a hug too.....and if I could, I'd bring you a cup of tea and read some interesting story from one of those books you have all stacked up. I could probably Pin stuff for you too...since we have the same taste nobody would even know it wasn't your finger touching the button!

  4. Shawna, I don't really know what to say other than I am very sorry that you're struggling, and I hope you get through this acute phase to a period of remission. Living with a chronic health problem must be awful - I am trying to imagine it, but failing. Of course you will feel low about it all at times - who wouldn't? I get very cross when anyone says about Nina and her skin condition that she's probably OK with it because she's never known anything different - what crap! Being used to something because you have endured it for a long time doe NOT make it any easier. So my sympathies are with you, and also my hopes for better days to come. xxx

  5. I don't think it is possible to live with a chronic illness and not feel isolated and depressed, at least at times. I'm sure that even the most positive and accomplished person would feel like she is holding on a thin tread in such circumstances.

    I've been feeling quite bad for the last month or so...a combination of a few factors...but mostly medication for lowering the immune system, that is the only solution for immune diseases such as Chron I'm suffering from...and it's not exactly a perfect solution.

    On those days I feel decent, I always try to do as much as possible (often more than possible) because at the back of my mind there is always that paralyzing fear I'll end up for months in hospital again.

    Lately, I've been having flood nightmares and I don't really need my subconscious to tell me that I've feeling overwhelmed. There were days when I would literally bang my head against the wall.

    It is always temporary, getting better..for people who have some kind of chronic illness...and often it is hard to fight the fear away.... but what else can we do? I think that not feeling guilty for being depressed is a good place to start. Accepting it is normal and nothing out of the ordinary (what ever ordinary should be in the first place).

    For me it helps to spend some time on my own. I always hike in solitude...walks and replacement for diving and swimming that I can't do where I live now (because the sea is not 5 minutes away as it used to be when I lived in Croatia).

    Any real art can be quite exhausting...I sometimes really hate writing. I hate the compulsive need I have to write because I doubt that anything will ever come out of it...Nothing tired me so or takes so much energy from me...I have no idea why I still do it.

  6. I do appreciate how candid you are btw! Life with any kind of illness can be quite hard and reading your story made me think I really need to stop living in a state of fear (what is really what I was doing) so thank you for that.

  7. Shawna, please, do not worry about not reading blogs, or reading but not commenting. It really is not essential in life. Just forget it. What is essential, just as you said - that you ARE the person who is full of life and love. You are! But at the same time, your soul is wounded, and it needs healing. This is the real problem, I believe, with all types of illnesses, especially chronic ones. This is what really needs to be addressed. Not your body. Not your brain. Your soul. Precious, precious core of you. There is nothing religious or superficial about our souls. It is as real as our hands, our eyes, our hair. When you suffer physically, it is always an outer sign of your soul suffering. So many "outer" reasons to suffer... and only one inner reason - we are hurt because we do not truly, fully accept ourselves. We all have sad stories and reasons to not fully accept ourselves. I developed eczema lately, in the last few years - because of the inner conflict, a very strong inner conflict I have been working through. Such tasks as healing our soul do not resolves themselves over night. They need a lot of inner work. But it does not mean that we have to work hard and have sleepless nights and beat ourselves up for what we did not "achieve"... on the contrary, the main thing is to relax, to stop analyzing, going in circles, listening to the endless voices that fill our heads with anxiety and fear. Let them go. Pay attention to those quiet voices that offer you peace... peace with yourself... peace with the people who made you angry, hurt you in one way or another... they did not do it because it was their goal, they did it because they are full of hurt themselves... Once we accept it, not in one big "block" of acceptance, but little by little... we truly cure ourselves. Take care of you, love you, cry if you need and feel helpless, but please always remember the light - it's there always, it's right there in the room with you now, it's within you. Always. There is no one day without light. Love yourself. Do not make my comment public if you don't want to - it's totally up to you, you can delete it, because I understand how vulnerable it is, what I've said here. We are all not perfect and have many, many wounds... it's what we decide to do with our wounds, that's what matter. I decide, for myself, to cure them, to stop blaming either myself or others for what did not go the way I wanted it to go. The answer is always in compassion - towards yourself AND towards others. we all have wounds. We all need healing. We all need compassion. We all need love.

    Love you, hug you xxxxxxx

  8. Nothing I can say to top those who've commented before me. Thinking of you and hoping things improve for you. x

  9. I am so sorry to hear you are struggling right now. ((((( Shawna )))))

    I know how debilitating chronic pain can be and how it can drag you down into a deep pit of depression that makes climbing out of bed seem like climbing the highest mountain.

    I just hope that you turn the corner and start to feel more like yourself. Putting one foot in front of the other is half the battle.

    Thinking about you!


  10. sleep well my friend and hopefully wake up refreshed and with some sunshine! xxxxxx

  11. My husband is a medical doctor who has successfully treated many many many individuals with ME, so I thought you might like to know what he recommends. He says that there are two types of people with ME: those who exercise, and those who don't exercise and may also be on narcs (narcotic pain killers). Those not on narcs and who exercise get better; those who stay on narcs and don't exercise get worse. Period. He advises people to taper off any narcs they may be on, and to start exercising. The aim, he says, is to be doing an hour of intense exercise daily, but when you have ME, of course, that is easier said than done. So what he has patients do is to start with whatever they can start with, even if it's only 5 minutes of exercise, even if it's only 1 minute of exercise. Start where you are and gradually, over many weeks or months or a year or more, build up to 60 minutes of intense exercise every day. Even if you start with only 5 minutes a day and increase it by one minute a week, eventually you WILL be doing 60 minutes per day, and if you keep that up, you will remain effectively treated and able to live a completely normal life. You do have to keep it up though: it is not a cure that you do once then stop. He uses the same treatment for fibromyalgia, except that he tells those patients to start by walking in a swimming pool for 5 minutes, and gradually increasing the number of minutes walked until the patient can swim vigorously for an hour; then the person can either continue with an hour a day of swimming or switch to some other form of vigorous daily exercise. Again, he says that there are two types of people with FM: those who exercise and don't take narcs, and those who don't exercise and/or do take narcs; and that the former get better and live completely normal lives, while the latter get worse and worse. He also says, BTW, that exercise is a superb antidepressant if you do an hour of vigorous exercise every day (but he also says that antidepressants themselves work very well and indeed he takes an SSRI himself in addition to exercising; he says that not all antidepressants work for all individuals and that if one seems not to work it should be switched to a different one, which might well work). I do hope this helps you or someone!

  12. Thank you for your suggestion, Anonymous. I have lived with this condition for thirty years or more and in that time cycled through many relapses and remissions, I have had periods in my life where I exercised and was very fit, and I am even trained as a fitness instructor. I have, at most, been able to sustain about a year of a lifestyle that involves moderate to vigorous exercise but eventually I crash again. I have been on a variety of different medications in the effort to find what works best for me and I have also had long periods where I was not on medication. It is a constant process of figuring out how much activity is right and the bar is always moving. I believe there are two types of ME or two ways in which people experience it. Some people seem to suffer acutely for a few years and then recover completely. Others are like myself and it is chronic. I will get better than I am at the moment. It has happened before so I am certain it will happen again. This particular relapse is taking a bit longer than I expected. Thank you for your concern and your suggestions.

    1. I doff my cap to you Shawna for your obvious restraint in your response to this missive. It is almost as outrageous as it is insensitive and "Anonymous" is very evidently clueless about the disease and its highly debilitating symptoms. Her treatment regime is like suggesting that a mentally retarded person is given a regime of first class education in order to cure him or her. As for the doctor husband - that he still has a licence to practice is as miraculous as the "treatments" that he prescribes and I'd say that he is quite possibly in breach of the Hippocratic Oath. I am sorry you had to endure reading this utterly insulting nonsense, but such is the nature of the Internet I suppose. I wish you well and send you strength.

    2. I like your sleeve. Your love for me looks perfect on it! Thank you for that, your love, loyalty and way with words are all highly valued. xoxoxo

    3. Oh now I have that song going through my head!! lol :-)
      Thank you Shawna!

  13. Hope you are feeling better soon ... this comment feels a bit inadequate ... but I sincerely hope you are feeling better soon.

  14. Hey Shawna, Thank you for your honesty in this post ... although I do not suffer from a chronic condition I have suffered with daily pain for some 42 years and understand some of the exhaustion that comes from that ... although I know that it is not a touch of what you are dealing with. Wish I could pop around and make you a cuppa tea and do whatever it is that you need to be done ... as you know the biggest problem with that is I live on another continent!! LOL!!!

    I will keep you in my prayers for relief from the exhaustion you are currently feeling and that you find enough strength to get out of bed and paint some of those gorgeous pictures of yours.

    Sending light, love and strength your way!!!

  15. Oh Shawna, I do have to read this, because what kind of a stupid friend I would be if I don't read this!!! I know it must suck and it may seem like it will be shitty forever, but you and I know, it will not. There are crappy days and there are good days, all we have to do during the crappy days is take a stance and not give a fuck. I know it sounds stupid. I feel like most of your struggles come from the fact that you want to be someone else, someone that doesn't have ME. And I feel like when you have shitty days you smash yourself on the head for being so tired but this is the opposite of what you should do. You are an awesome lady and you suffer from an illness that makes your days shitty, but that doesn't mean you can't be content and find peace in the little things. Most people feel sadness and pain when they're not in control of something, when they desperately want to change something that they can not change. I know it may sound silly, but when you have crappy days just relax and know in your heart they will be over, the sun will come up and just do stuff that make you happy, or take your mind off of any negative thoughts you might have. And I'm not saying this will magically help you feel all better and healed, but it will help you to be OKAY, even when life sucks.

  16. You could never be a stupid friend! You are the best ever combination of sweet and fierce. You are quite right and I think that mostly that is what I do, just keep going and staying positive. Sometimes I hit the wall and get blue because I am too exhausted to do things that I like to do even if they are sedentary things. One of the best remedies is to cuddle a cat. It's low calorie and useful on those days when I am so cold. xoxoxo


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