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My Body Is Freaking Out & So Am I

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It feels like October here in London. The sky is grey, the rain is pouring down, and I’m spending most of my time curled up in bed alternating between a massive jumper and my duvet over me and having the fan on full blast.

No matter what I do, “winter” weather like this makes my life damn near impossible. My pain levels shoot straight through the roof and into the stratosphere and I’m often stuck inside because the rain makes my joints even more unstable. Of course, it depends on the day, but this is when I’m significantly more likely for my never-ending subluxations to start up again.

That’s what has been happening to me over the last few days.

And even though it happens to me every single year, it still takes me by surprise that I can be in this much pain and feel so unwell that I don’t know what to do with myself.

This has been made all that much harder right now by the fact that I’m not well enough to work (it’s usually the time that if I’m in work I have to stop) and am feeling incredibly useless. Unfortunately, that’s leading to the seeds of depression starting to bloom yet again.

Today has been particularly difficult. Several days of build up of bad weather, massively overdoing it last week with going to Sussex and then surviving the Plant-Based Picnic has meant that my body has gone into a bit of freakout mode.

Having to stay in and rest (because I can’t walk in the rain, I’m trying to do some gentle body weight exercise in the house) makes my brain go a bit crazy. I’m still learning to accept my limitations and that I can’t do the things I want to do, but it doesn’t mean that I’m always ok with it. Seeing friends go off and start exciting projects, travel around the world and do jobs that they love and are stimulating makes me incredibly jealous. Not productive, I know, but when I have all day to spend in bed, those thoughts pop into my mind. Add to that the amount of times I’ve heard “but you look so good!” as I’m totally on the verge, and we’ve got a particularly potent mixture of “ARGH” and “meh”.

As much as I think that writing about my health and raising awareness of invisible illness is so extremely important, it’s not what I ever saw myself doing. My weekly rants roll of my tongue/out of my fingers, and I don’t feel like I’m making the difference to anything that I feel like I want to be making. I want to be able to work, I want to be able to go out, do a good job and do something exciting and interesting and that I’m really passionate about. I just want to do.

Unfortunately, the reality is that my body just isn’t up to that. And while I’m working really hard to not push myself too hard and make myself more unwell, it’s just incredibly frustrating. Not to mention scary that I can’t earn the money that I was, especially when I have rent to pay. Eating the way I have to eat and the extra things I need like taxis, osteopathy etc is expensive.

Pretty much everything I’ve wanted to do I’ve had to stop at some point because of my health. Trying to find that balance is so incredibly difficult. This morning I went on a weird internet binge trying to find classes or courses or something, anything I can do (current thought: I should go to law school part time!) that gives me valuable skills and knowledge just to give me something to do. I’m bored with the internet, I can’t watch anything else, and I need a break from reading. I need to feel like I’m doing something, achieving something. And yes, that’s probably part of our culture of needing to achieve and compare and “do” things. But as much as setting myself small challenges helps me get through the day, I need something bigger, more exciting. And I’m stubborn. So that’s what I want. Shut up.

One thing I have finally accepted is that sometimes there’s absolutely nothing I can do (or have done) that will make my body go mad. I always just thought that until I got caught up in the whole wellness scene. The more and more I read about the miracle cures, and how just thinking the right thoughts and eating the right foods can cure everything (go away), the more “done” I have become with it all. Sometimes we’re just not going to feel well. That’s the nature of chronic illness. I’m extremely happy for the people who have managed to feel better, and I know that I can feel significantly better than I do. But right now, my body is having a freak out and all I can do is try and find ways to support it the best way that I can.

The main thing is trying really hard to manage the depression that comes with a severe flare up. I’m lucky in the sense that my depression has always been reactive. I always get depressed after (bloody hell there was just the most insane rolling thunder!) my body starts going haywire, not the other way round. I think this is something that probably deserves a post on its own, as many people with chronic illness are accused of depressive mindsets as the cause not the effect. There’s not much discussion of the fact that is the lack of health, pain and isolation that causes the depression in the first place. That’s the case for me anyway.

Ultimately though (and apologies for the rambling post, I just needed to do something today), what’s most important is to remember that it’s ok to have days like I’m having today. I’m generally not one to feel sorry for myself. When people ask me a question and I answer honestly (maybe like “yeah, that was my shoulder that just fell out” or “yeah, I had to spend the last two days in bed”) I’m not saying it to get sympathy or because I feel sorry for myself. It’s just a fact. Like, I had a smoothie for breakfast or I’m going to watch the Great British Bake Off tonight. Mmm cake…

Sorry. Distracted. I like cake.

The point is, that even though I don’t often have times where I feel sorry for myself, sometimes it’s ok to have a freakout morning/day/evening. The key thing is to freak out and then move on. I’m not really sure exactly how I do it (I think writing helps), but it’s something that is entirely natural and normal. And don’t let anyone tell you otherwise. I’m 26 years old and have had to stop doing so many things that I’ve enjoyed because of my health. I try so many different things and they work for a bit and I feel like things are getting back on track until they’re not. That’s a really fucking hard things to deal with. And so “grieving” and allowing yourself to feel sad is ok. It’s entirely normal. I’d be more worried if I didn’t feel sad about that.

So, today is going to be one of those days, and while I doubt that I’m going to find a solution, especially considering my closest friends who have very similar ambitions to me who also have health problems haven’t figured it out either, I’m going to tantrum it out so that tomorrow I’m more able to deal with it.

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12 Comments

12 Comments on My Body Is Freaking Out & So Am I

  1. Jen Dark Purple Moon
    August 26, 2015 at 2:45 pm (2 years ago)

    Oh Natasha! I hear you and I am sorry for your pain.

    This weather is doing my head in too, I just want the most almighy thunderstorm to happen and maybe this feeling like my face is going to explode soon will disappear.

    I don’t have anything useful to say except yes it fucking sucks and allow yourself to be jealous and angry. Not forever, but we do have to acknowledge that this is not what we wanted for our life and it’s not fair. I find if I deny that then everything gets worse. Acknowledging it for awhile strangely allows me to move on with my life.

    (formerly posting as Jen Farrant)

    Reply
    • Natasha Lipman
      September 1, 2015 at 11:10 am (2 years ago)

      Thank you, Jen!

      Yes, isn’t the weather just awful?! I wish it would make up its mind – my body can’t quite keep up.

      Oh totally, I find that if I don’t let myself be angry I’m just fooling myself! I hope you’re managing ok today.

      Reply
  2. Corah W
    August 26, 2015 at 5:47 pm (2 years ago)

    Sometimes I read your posts and I’m freaked out by how much like me you are. You’re like the 8 year younger version of me, with much better hair (I shaved half of mine off in a 2007 Britney Spears moment this year. It makes me seem very hipster apparently, but I’m missing my long hair.) I shut my health blog down after I just couldn’t handle the disillusionment I experienced with my health failing no matter what I did. I’ve restarted a new honest, real blog but I haven’t shared it with a soul yet… I don’t feel up to being out there in the blogosphere yet after having a fairly public meltdown (albeit I only had about 3,000 some followers). I’ve been penning a post titled “Confessions of An Ex-Health Nut Blogger” for about 2 months, but I just can’t seem to get the words out right.
    I too get endlessly frustrated at my inability to “do something”. I’ve been dealing with health problems since I was 15, and I’m 34 now so I keep thinking I should be adjusted to this by this point, but I’m not. My counselor said to me the other day, ” Surely you’ve come up with some coping skills that work for you.” Well, if you call dessert and alcohol a coping mechanism, then maybe. She tells me I need yoga… probably.
    I have 2 kids and I try to “be in the moment” and enjoy them the best I can, but most of the time I just can not wait for bedtime so I can have a good cry without them witnessing it. I spend a lot of time on Pinterest and Facebook and I hate them mostly. So tired of the same old (seeing other people enjoying life, vacations, jobs etc.), but I don’t know what the hell else to do. I have millions of pins of craft projects that I’m incapable of doing. I guess I think someday when I’m “better” which in all likelihood will never happen. I’ve tried going back to college 3 times (never finished a full semester), had to quit multiple jobs, and dreamed of starting businesses (cupcake shop, vintage camper pop-up shop [ I made it as far as purchasing one and starting to restore it; 3 years later it’s sitting half done in my parents backyard, us having no money left with all the medical expenses to continue it], coffee shops). My ideas seem epic to me and I can see myself pulling it off in my head but when it comes down to it, I don’t have the physical strength to get it done. My latest attempt has been signing up for Skillshare classes to try to hone some art skills in hopes of doing some freelance work, but I’ve not completed anything yet 4 months into it.
    Wow, sorry this got so long…. didn’t mean to take over your comments. I just feel what you say so much… like they are my own words sometimes, so I just feel compelled to share. I wish I had some positive juju to send you today, but I’m having a rough day myself. In bed with a cold on top of all the other crap. So, let’s just agree to beat the hell out of this day by glaring really hard and long at it and hope for better days ahead.

    Reply
    • Natasha Lipman
      September 1, 2015 at 11:13 am (2 years ago)

      Thank you so much for sharing your story, Corah. I’m sorry to hear things have been so difficult. Let’s definitely beat the hell out of it all and find things that can keep us going!

      Reply
  3. Jennifer
    August 26, 2015 at 7:56 pm (2 years ago)

    Natasha, I am similarly having a body break down. Aching and so tired I can’t do anything. I completely resonate with all that you say but I am als mourning the life I had before the EDS finally got the better of me over the last 10 years. I am single parenting two kids and I sometimes wonder why carry on when there is no relief on the horizon and I cannot plan anything because inevitably I will have to cancel. Supposedly camping this weekend but the reality is that I don’t think I can and if I push myself I will spend next week in bed trying to recover….so miserable and like your other commenter, sugar and alcohol have become my crutches and are making me very fat and unattractive so I hate myself more. So in summary, knowing you are not alone in this is very supportive so keep posting for us all! Gentle hugs

    Reply
    • Natasha Lipman
      September 1, 2015 at 11:12 am (2 years ago)

      I’m so sorry to hear that things are difficult, Jennifer.

      I have found that diet is so important for management, but when you feel absolutely awful, it’s so much harder to eat healthily. Why would you want to? I’ve been a bit-self-sabotagy recently and so my mum is making me do three days on juice to get my brain back into it. It’s a trick that always works for me. I guess it’s learning to find replacement crutches that works for each of us, but unfortunately it’s so much easier said than done.

      I hope you’re having a better day today.

      Reply
  4. David Bridger
    September 3, 2015 at 8:56 pm (2 years ago)

    You’ve been on my mind, Natasha. I read this post when you published it last week, but I was just sliding over the sharp edge into a relapse so didn’t reply right away. In the meantime I’ve been groaning in bed and remembering your post from time to time. I think my most helpful response might be to link you to one of my posts from last year, which is sort of looking at the same thing from the other end of a time-telescope.

    Here it is: http://davidbridger.com/once-upon-a-time-the-london-marathon-made-me-cry/

    I hope today has been a good one for you and that tomorrow will be even better.

    Reply
  5. Paula
    September 6, 2015 at 12:59 pm (2 years ago)

    Thank God for your blog Natasha I have spent a few minutes roaring with laughter at your words as I know exactly how you feel as I have just been there. My angel cards said I needed a good laugh to push away the negativity which has wormed it’s way in during the last two weeks of bed rest. My one consolation is the fact of a neighbour who is young,and unemployed. We actually have something in common. I feel frustrated, angry, bored, I have lots of free time which I cannot use and a car sitting on the road which I cant drive. He is in the same position except he could do some voluntary work and he can at least socialise. but, the similarities are present. I raised two children one of which had a disibility on my own and no help with my chronic illnesses and Now one of my sons is my carer. I have tried everything in the last fourteen years and I get relief for a while. The only thing to work to-date is the raw eating plan. My pain levels vanished, my energy soard and my plans for my business started to roll and then out of nowhere, BANG major relapse! Like you Natasha, I am about to do another juice fast to perk up my body. I don’t seem to be able to get past the smoothies and juices and I want maincourse not sugar. Sugar causes pain people (personal research) and having got down to a size 12 I am now a size 16 again and I gave all my beautiful clothes to charity. Even organic ‘naughties’ put on weight….I forget I am not alone although most days I feel I am. I have a meditation course to look forward to which is achievable. Small steps everyone, onwards and upwards.If you find something that works for you, well done. I was raw vegan for five months but it is hard. Thankfully we are not faced with war and deprivation and our wonderful county looks after us.Bless us all and smile, the sun is out today!

    Reply
    • Natasha Lipman
      September 9, 2015 at 1:19 pm (2 years ago)

      And it’s out today, too! Thank you very much, Paula. Hope today is a good day for you.

      Reply
  6. Derrick Wess
    September 7, 2015 at 9:17 pm (2 years ago)

    I think I may have just read this blog post for the second time but it’s impact is no less lessened by that. I would write more but my mind is frazzled by the work and an evening workout. My day job is at a special needs school and I’m now working with children/young adults with multiple and complex needs which include could include chronic illnesses (some of the names and meanings of the conditions are lost to my memory) and I can only imagine what it is like for them at such a young age. In a way, you can speak for them (albeit by speaking for yourself) so I may help them more. I’ll certainly be following your posts more!

    Reply
    • Natasha Lipman
      September 9, 2015 at 1:18 pm (2 years ago)

      Thank you so much, Derrick. I’m really glad it helps you perhaps understand them a little better!

      Reply

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