17 Jun 2013

The Dark Side of Chronic Illness

The Dark Side
(Shit defo been watching too much Starwars! Damn you Sami!)

This is the dark side of living with chronic illness and pain all day every fucking day. Today I am not doing good at all. I can't even be bothered to try and raise a fake smile. I can't be bothered to move any muscle let alone ones that allow you to smile. 

I'm going to write all my feelings down and share them as I know other people with a chronic illness will feel my pain and I want you to know you are not alone.  We can't all be positive all of the time and no amount of positive thinking will 'cure' us. Despite what some fucktards might believe/advocate.

All I've done today is lie in my bed crying. I feel like I'm never going to stop. Sami is trying to cheer me up but unfortunately its not working like it usually does. This makes me feel bad because all Sami wants is for me to be happy but right now I'm not and its no ones fault its just something I'm going through at the moment.

Its Father's Day today and I want to go and see my Dad but I'm in so much pain and I cannot stop this crying. I don't want him to see me like this - Sami agreed. My thumb is agony I can't even lift a cup, it feels like something is going to tear when I move it.  My arms and legs feel heavy, I'm in pain everywhere including parts of my body I didn't know were there and my head is pounding. On top of all that I feel really down and shitty. I'm even having disturbing thoughts - I'm thinking, 'How can I continue to exist like this?' 'Seriously how?' I'm also thinking, 'I can't go on like this'. I can't do it.  I've got enough tablets and alcohol to say good night forever. 

Don't worry - its not something I would actually do but these are the thoughts that are currently going through my head. I feel bad thinking it and I'd never do that to Sami or my family and friends but this is what its like to be in constant pain. You think about ways you can stop hurting and sadly that is one of the ways. Bit extreme but hey, if you haven't experienced pain like I have then you won't get it and if you have I bet you're nodding in agreement. And if you have experienced intense and relentless pain and aren't nodding in agreement please let me know your secret.

Sami said to me earlier, 'Don't worry you're new tablets will kick in soon and hopefully you'll feel better'. Perhaps he is right but the fact is, I've been in constant pain (albeit varying degrees of) every single day since December and before that I had many more bad days than good, I was just lucky to at least have SOME good days. Something that is now a distant memory. These new tablets aren't a cure - they are just supposed to make it easier to live with. So it will still be there.  I said to him most people would struggle if they felt like I did for a week. I've been like this for nearly 3 shit years and I'm only 27 - how many more years have I got to live like this? 30? 40? 50? It doesn't bear thinking about. Maybe there will be a cure in my lifetime but I'm not going to put all my energy into believing that. Especially with the pharmaceutical companies making so much money out of me and others with long term illnesses. Our pain is their gain.

I just want to be me again. The old me. The fun-loving, crazy, hyper, energetic me. The me I like. I hate this me. This me is rubbish.  All I do is whine and complain and sleep. This me is shit and miserable and just wants to lie in bed wallowing in self-pity with greasy hair (yuk). This me doesn't even like socialising. The old me LOVES to socialise and be around people (and have clean hair).  What is happening to me!? Lupus is happening to me. And Fibromyalgia is happening to me that's what's fucking happening to me. Pain and more pain. Its destroying me and right now I'm letting it.

This pain is unbearable. I think I'd rather be stabbed. How am I supposed to cope with this for the rest of my life? How is anyone? I'm living in HELL.  Is it even possible to cope with this for the rest of your life? I've even thought to myself 'Oh why can't Lupus just get on with it and attack my organs and be done with me?' Then I'd die and be pain free. How fucked up is that?

I know, its horrible and I'm sure it makes for uncomfortable reading but I said when I started this blog that it will be an honest and open account of my life with Lupus including the highs and the lows. So here I am. This is me and here are the lows.

I haven't openly expressed these thoughts to anyone. Ever. I don't want to upset people or inflict any more worry. No idea why I find it easier to write it all here for all and sundry to read! I sort of forget people are actually reading this.  It's weird because people that don't know me must feel like they do because I really do tell it like it is - no fluffiness or sugar coating here.
Its like therapy for me because I feel like I write it all down and then those thoughts are out in the world and gone from my head. Does that make sense? Probs not! But that's how I feel. I'm already starting to feel a little better. Well, I've stopped crying for the first time in hours.

I want to blame my new tablets for why I'm feeling so down but I guess I should accept that feeling down comes with the territory of living with a chronic illness (or two).

I just spoke to my Mum to let her know I'm not up to coming to see Dad and she said its fine and to just accept that I'm having a bad day, have it, embrace it and wake up tomorrow in the hope it will be a better day than yesterday. I think that was good advice.

So here I am embracing the shitness. I'm going to eat a whole bar of chocolate and have a glass of red. I'm not supposed to but I don't give a flying shit. Times like these you need a glass of good quality (strong) wine. The only thing is, that involves getting up out of my pit. Ok I'm gonna do it because I'm embracing the shitness.

To anyone reading this feeling the same way, please feel free to send me a message or add me on facebook. I'm a good listener (as well as talker!) Or maybe try out what I've done and put to pen to paper. Its very therapeutic, almost like letting go of your emotions. I genuinely feel a little bit better. No one should feel alone during times like these.

Right where is that chocolate.....

Monday 17th June 2013 

That was yesterday. I ended up eating three big bars of chocolate which is so unlike me. I'm usually quite controlled when it comes to my diet. Oh well when you're depressed it has to be done.

I'm feeling pretty much the same as yesterday.... I've spent most of the morning crying. I'm not even dressed yet and its nearly 2pm. The flat needs hoovering, I've got ironing to do and I can't be bothered to move. I have no motivation whatsoever and I'm in a lot of pain so that's not helping.

I spoke to my Mum and she said its ok to wallow for a few days but only a few days. Weeks and months, No but a few days Yes. She said it wouldn't be normal if I didn't wallow occasionally with the amount I've got to cope with. She said we can't all cope all the time. Right now I'm really not coping. I admit it. I've decided I'm going to call my doctor and ask to be referred for some counselling. I've never had counselling before and it might not be for me but I'm going to give it a go. What have I got to lose? I've already lost my sanity!

So today I am going to allow myself to wallow. I'm going to have a bath, put some clean pj's on and then I'm going to get back in my bed and stay here for the foreseeable.


  1. Dear Faye,
    I know these thoughts very well. I have had them myself and still have them once in a while. I've been living with lupus for nearly 20 years now and you do get used to it. You will come to a point where you will accept that you have a lifelong illness. Counselling is a good idea, it helps getting everything out once in a while. And wine always helps me ;-) But seriously, you'll slowly accept the fact that there is nothing you can do about this disease and you just have to get on with it. On some days better than on others. It took me a while before I could guilt free lay on the couch all day because I was in too much pain to do anything else even though there was washing up to do, or ironing or whatever else. But you will get there. You have a chronic disease for goodness sake, you are allowed to feel crap. And you're allowed to make the best out of the situation and if that means chocolate and wine, so be it. It will get better though, I know it must sound cheesy, but the older you get, the more you accept it and you can actually use it to your advantage. You're invited to some party you really don't want to go? Don't go. You don't feel well. Someone wants you to do something you think isn't worthwhile your time and efforts? You can't do it, sorry, not a good day for you. I have enjoyed many nights in on the couch with a good bottle of wine and a film on TV, having a whale of a time while my friends were at some BBQ in the rain or in the cold. And your partner can benefit from it too. Sorry, no, I can't come out, my girlfriend isn't feeling well, I have to take care of her.
    When I'm really down and going through a phase of depression I force myself to think about people who are in a worse condition than I am. Just think if you had no arms, or nowhere to live. I know, it sounds like platitudes but it does help actually.
    If you want to lose weight, I have recently started the 5:2 diet. Five days eat normal, two days eat 500 calories only all day. It's achievable and I've lost most of the weight I put on during my steroid phase.
    Here's a big hug for you! Hope you have a great weekend, pain free and full of laughter!

  2. Thanks for your message Fran. I will certainly use this disease to my ad I'm advantage where possible! I'm currently having a couch day and feeling guilty about it! Can't help it. I hope one day I can lie here guilt free! xx