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My body is crashing. I didn’t know what to do. So I’m writing about it.

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I can literally feel my body shutting down and I don’t know what to do except cry hysterically. That hurt my rib so I’m writing instead. I thought it might be helpful for some of you who are struggling with similar things to know that you’re not the only one and having these feelings of anger, sadness and resentfulness are totally normal and ok.

Yesterday was my birthday and I spent the day with my friend Lucy (yes, you’re mentioned on my blog again – I await the excited text!) eating, theatregoing, eating, chatting, walking and doing excellent impressions of Veruca Salt. Seriously, I play a precocious musical brat very well. Quelle surprise.

Today I went into town on the tube to have a meeting, lunch with my mum, and then went to buy a new pair of glasses. By the time I got home my right shoulder was killing me (because I stupidly used a bigger bag than I should have), my knees were starting to buckle, my stomach was killing me and I had a massive headache. Within a few minutes of “stopping” (read: getting into bed) I felt my body do the thing it does when I finally stop pushing and let it rest. It just crashes. I can feel it happen. It’s like the life force is slowly being sucked out of my body. I spent about four hours lying flat on my face in the pitch dark because I couldn’t stand any light or sound. Except when I realised that Serial was back and I needed to listen to the first episode. It was excellent, as usual, but my head hurt so much I kept drifting in and out.

On top of all of this, I had something a few days ago that I think was off, and since then I’ve been suffering from stomach pains that I haven’t had in over a year. A few years ago when a bunch of my newer problems started my digestive system pretty much stopped working and I couldn’t eat anything. The pain was almost at that level. I’m hoping that it goes away soon, especially because I have worked so hard and have been (relatively) strict on a pretty restrictive diet to help me be able to eat again. In fact, I’d almost forgotten about stomach pain entirely, it was such a non-issue. I know I’m probably overreacting, but I’m really worried that (because my body is stupidly sensitive and one bad thing can cause problems for a really long time) I’ve got more problems to deal with now on top of everything else. On the plus side, there’s always that silver lining of being glamorously slim as a result.

*flicks hair*

The thing I find so weird is how I can get on with things through sheer force of will. I can push myself to go out and do things and manage and cope(ish). I can run off of adrenaline and be out in public and stuff. I can keep going. I can commit to doing things and then forcing myself to do it. Of course, that’s only if I’ve rested up before. But you know what I mean. It’s so weird how my body seems to find that capacity to do things. It’s just the payback. Within such a short time of stopping. I remember when I was working at Virgin, I told them that if I was in the office I want to be going from meeting to meeting. I need to be constantly busy. If I wasn’t, I’d go for a walk or do something, anything, because I knew that as soon as I stopped my body would crash. And crashing really isn’t conducive to anything. Again, I know it’s the whole boom/bust cycle, but sometimes just to be able to get on with things, you need to push. If I didn’t push, I’d do nothing. And aint nobody got time for that.

At times like this all I want to do is cry. I feel like I spend my life resting for small activities and the rest of the time recovering from those activities. I’m in so much pain that I can barely put it into words. I want to be sick. I want to scream. I nearly threw my laptop at the wall but not having a job means I can’t really afford to replace it. God, being ill ruins everything!

I’m fed up. I keep pushing and keep trying to do thing, and I manage to do them pretty well, but the payoff is often me feeling absolutely horrific. It’s no way to live. I try to stay as positive as possible. I stretch (well, the kind that us EDSers can do), I meditate, I’m (mostly) ‘kind’ to myself (although I have way too high expectations of myself, apparently – I don’t see why I should have to lower them – well, I do, compromises and being realistic), I (mostly) eat well, I try and exercise and I work really hard every day at doing all the things that I should be doing to try and feel better and get on with my life. But my body doesn’t seem to care. I know that’s the nature of chronic illness, and I hope that you can agree from reading my blog that I generally try not to be a massive negative Nancy and get on with things as much as possible. But sometimes it’s all way too much and I fucking hate it and want it to stop. Because I can’t even sleep through it. When things are as bad as I feel now, I can barely do anything, let alone things that distract. I feel like a brat, but all I want to do is stomp and scream that it’s not fair. I’ll get over myself soon enough, but I’ve been dealing with this stuff for nearly two decades and it’s fucking weighing, man.

The hardest thing is knowing that there’s very little that can be done. I’ve seen all the specialists, tried all the meds, done all the things. It’s pretty much up to me to just get on with it. I’m lucky to have the support of great family and friends (as well as all the people that read my blog) but it doesn’t change the fact that essentially I just have to wait for my body to get over itself and decide to give me a little bit of respite.

On the plus side, I happen to have an Ocado food delivery coming in about ten minutes and I have some granola, almond milk and berries in there. It literally took me two hours to get out of bed to go to the loo, so cooking anything is totally off the table. I also got a new book that is supposed to be hilarious. It’s called “Look who’s back”, and it’s about Hitler coming back in 2011 and his hijinks. If anyone has any excellent cheery-uppy books they could recommend, please leave them in the comments!

So yeah, I guess there wasn’t really much point to this post, but I needed to do something rather than cry right now. Le sigh. I do feel calmer. Yay for cathartic blogging. All I can do is end by saying that I’ve learned that feeling like this isn’t a sign of weakness. It’s totally normal and understandable to struggle. We’re often expected to portray an insanely positive side of everything on social media, and while I agree it’s important to share how I manage to cope, I strongly believe it’s really important to share when I’m struggling too – because it happens to everyone.

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18 Comments

18 Comments on My body is crashing. I didn’t know what to do. So I’m writing about it.

  1. Silvia Logan
    December 10, 2015 at 9:23 pm (2 years ago)

    I understand your point very well, Natasha. I understand how awful it feels to be in whole kind of pain and discomfort. All those pains and discomforts people feel seems to ruin everybody’s day that he or she want to enjoy. At least, you have your Master’s degree in Law that will keep you busy. Happy belated birthday, Natasha!

    Reply
  2. Jo
    December 10, 2015 at 9:25 pm (2 years ago)

    Thanks once again Natasha for putting the things that I think and feel into actual real words that I can share with other people!

    When I’m crashing and I don’t know what to do with myself I usually reach for a book by Milly Johnson. Her books are so gripping and easy to read that they’re one of the very few ways I’ve found to pass those hellish hours.

    Reply
    • Natasha Lipman
      December 10, 2015 at 9:42 pm (2 years ago)

      Aww, thanks for saying that, it means a lot.

      I’ll definitely check her out, thank you!

      Reply
  3. Emma
    December 10, 2015 at 9:34 pm (2 years ago)

    Bloody brilliant blog. We all try so hard to stay positive all the time and frankly, that in itself can be exhausting! We all have our down days but it’s not always easy to talk about as people don’t get it and you almost feel like you need to be seen to be “trying”. Anyway, I just wanted to say yes – I get it! I quite literally feel your pain.
    Oh and you will totally love Look Who’s Back – bloody hilarious!

    Reply
    • Natasha Lipman
      December 10, 2015 at 9:43 pm (2 years ago)

      Thanks, Emma! Ugh, it can be *so* exhausting. And you don’t want people to think you’re making excuses or looking for attention. It’s just sometimes so hard to cope. I’m glad that someone feels my pain, although I wouldn’t really want anyone else to 😉 I’m excited for the book!

      Reply
  4. Sandy
    December 11, 2015 at 9:47 am (2 years ago)

    Yes. I understand. It sucks. I think the worst thing for me is that I get so BORED, especially now that I’ve had to give up studying again. When I’m really tired I can’t read or watch anything. I can listen, however, and audiobooks have been my small salvation! I’m currently listening to the Just William books read by Martin Jarvis. I never read them as a child but they are so much fun – and they work on a sophisticated enough level to be entertaining to adults. I lie on the bed as I listen and look out the window at the silver birches, the sky and the pigeons huddled in the bare branches. I guess I’m lucky in that as I’ve got older I don’t get pain like I used to. Just shut down, like you say. Yep. It sucks. But you’re not alone – for what it’s worth. God bless x

    Reply
    • Natasha Lipman
      December 12, 2015 at 10:43 am (2 years ago)

      Thanks Sandy! Yes, it’s the boredom that does it for me, and the inability to do anything to fight it! Maybe I’ll give audiobooks another go – I really never enjoyed them. Love that you’re listening to Just William! Hope today is a good one for you :) x

      Reply
    • Angie
      December 13, 2015 at 8:07 am (2 years ago)

      Thank you for suggesting audio books, when I get a crash I can’t read or watch either but listening is ok so it might help me get to the end of some of my half read books – thank you for your suggestion!! And God bless x

      Reply
  5. Kharis
    December 11, 2015 at 2:00 pm (2 years ago)

    I have mixed feelings concerning others with EDS, on the one hand I’m happy to know I’m not alone but on the other I wish no one else had to deal with it. I don’t like talking about my EDS because my mum and I have only just found out that’s what’s wrong with us. Although we both don’t have it bad I’m really worried it’s going to get so bad I can’t horse ride any more :(
    I hope you start feeling better.

    Reply
    • Natasha Lipman
      December 12, 2015 at 10:45 am (2 years ago)

      All you can do is cope with what’s happening at the moment and try and look after yourself now! Hopefully it will never come to that :) Thanks so much h x

      Reply
  6. Francesca Stout
    December 14, 2015 at 12:38 am (2 years ago)

    Hi Natasha, yes, it’s very important to relate the truth of how it feels to have chronic illness on the bad days, as well as the rare ‘good days’ and the mediocre days.

    I have had M.E / CFS for 26 years (and learned that I had Joint Hypermobility Syndrome when I was finally assessed by a neurologist last year), and if there’s one thing I’ve learned during my thousands of bad days, it’s patience. the world will still be there for us when we feel better and able to rejoin society!

    Recently, I’ve seen an occupational therapist who specialises in M.E, and she’s been getting me schedule in some rest periods during the day, to avoid the crashes. It basically involves bed rest, three times a day, for 30 mins at a time, roughly three hours apart. It’s quite a commitment. It’s important not to fall asleep during these rests, or you’re less likely to be able to sleep at night. So I keep the lights on, and use a meditation CD. It acts as a bit of recharge. The result is that you don’t have ‘good’ days and ‘bad’ days’ as such, you have the same amount of energy every day. While I miss the good days where I used to rush around getting everything done before I collapsed, I definitely DON’T miss the bad days. I’m not saying I NEVER get bad days;some days things are out of your control; you get a virus, your neighbour keeps you awake all night or you’re kept away from your bed by an emergency. But in the main, it avoids the boom and bust cycle, which you’re aware of.

    Feel free to tell me to f*** off if any of that came across as patronising or preachy. I’ve just found that it helps me.

    In the meantime, I hope you feel better soon and that your stomach calms the hell down!

    Fran x

    Reply
    • Natasha Lipman
      December 30, 2015 at 10:48 am (2 years ago)

      Hi Francesca,

      That was really helpful, thank you! There’s nothing wrong with sharing what helps you in a non-preachy way 😉 Hope you had a lovely Christmas x

      Reply
  7. Kyra
    December 30, 2015 at 12:41 pm (2 years ago)

    I’ve never been able to explain to anyone how when I stop that’s me done end of, see ‘ya! No one has ever understood why I can keep going & push through a day of shopping or babysitting or cooking a dinner party but then God forbid I go shopping & someone wants to stop for a cuppa as they think that’s what I need & I’m a goner. I can push through almost anything for incredible amounts of time, I put together 3 kitchen ladar units last week & was fine until I stopped & it was like the energy & life had been sucked out of me almost instantaneously. It sounds so illogical & I get the impression (not that anyone has said out loud & it could just me being paranoid) that those close to me think I’m faking it somehow when I can be superwoman then about as useful as a baked bean. I’ve just cried so much reading this blog in particular as it makes me feel like I’m not insane, I doubt myself & wonder well is it all in my head, am I being a hypercondriac…but how can you & why would you psychologically invent such incredible, distressing pain, situations & as so frequently happens to be highly undignified predicaments (like getting stuck on the loo as my knees have locked & I don’t have the strength in my arms to hoist myself up on the side of the bath, so instead of calling for help I as carefully as possible flop onto the bathroom floor & perform my epileptic worm shuffle to try reach the door, knowing I’m only preventing the inevitable which is needing rescuing in a humiliating state at some point between my 6 metre shuffle from toilet to bed 🙈) oh god I’m sorry I’m rambling! Basically…thank you so much I might be balling my eyes out but it’s all in relief. I wish I could be as inspiring as you & I only hope to find a purpose some day soon as it is oh so hard to feel so useless & worthless within your close circle as well as in society at large! Hope you have an amazing holiday by the way, I’m working backwards through your blog entries lol. Thanks again!! Xxx

    Reply
    • Natasha Lipman
      December 31, 2015 at 3:16 pm (2 years ago)

      A ramble can be very cathartic, so feel free to ramble away 😉 I can definitely empathise with those feelings, and have definitely felt them all too many times. It’s not fun. I never know how to feel when people are crying at my blog, but I’m glad that you can get some relief from it and not feel like you’re the only one. I hope you enjoyed your trawl through my posts, and have a wonderful new year! x

      Reply
  8. Jaymie
    January 27, 2016 at 7:00 pm (2 years ago)

    Hi Natasha! I am happy I found your blog. I have EDS as well. I am 27 and I am really struggling to deal. I’ve been thinking about blogging to release stress or find a way to vent. This blog post really mirrors so many of my feelings. Thanks so much for sharing.

    Reply
    • Natasha Lipman
      April 11, 2016 at 1:32 pm (2 years ago)

      Thanks so much, Jaymie! I’m really glad you like my blog :) I definitely found that writing it is helpful, especially when things are difficult – it’s good to get things out of my head sometimes 😉

      Reply

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