Out of sync

I decided to stay in Cape Verde for the week instead of going home early. I wrote a nice big list of pros and cons (don’t we love those) for staying or going home and, ultimately, I realised I wouldn’t necessarily be much happier at home and I’d still be doing very little so if I’m not going to do much I may as well not do much in the sun!

Truth be told, I realised my ED has been triggered the past month because I have been feeling insecure and vulnerable in my relationship. I am still purge free but when I say my ED has been triggered, I mean those leftover voices and urges that crop up.

It’s funny. I know my relationship is great. I know my boyfriend is wonderful and I do know that he loves me but I’ve felt a little lost the past month to 6 weeks. Kept blaming it on the new house and the adulting stress that naturally comes with that. It took me getting on a plane on Saturday morning to realise how low I was feeling towards my relationship.

That in itself felt confusing because I simultaneously knew how much we love each other and how great we are together so why could I possibly be sad?

Occasionally I’ve felt he doesn’t love me quite the same way as I love him. I’m more proactive and giving in a relationship. I like that, it’s part of my personality but it’s also a flaw because it makes me vulnerable to thinking they don’t care as much as I do when that could be completely wrong.

I’ve done the most of the house planning and organising. I sorted the mortgage, legal docs and negotiations. I’m the one who researches and makes suggestions about rooms and furnishings (more often than not to be met with a “no” yet no alternative solutions offered. I’m the one who rearranges my work days (even when I really shouldn’t) to deal with deliveries and builders. I’m the one who deals with all those phone calls and emails relating to all that. Which is fine, I promise…again, I naturally default to being the organiser…but it would be nice for a little more action on my partners half rather than me feeling like I’m always chasing and him not wanting me to…

Sex has dropped too. Dare I say it, I think good sex is super important to a great relationship. I know some might disagree and say I’m wrong to emphasise good sex but honestly, the way I see it, happy relationship = better sex = happier relationship = even better sex = happy relationship…

Obviously that’s not always true. I know that. But for me, I do feel the happier I am with my boyfriend the more I can connect with him during sex and that then makes me happier.

He’s lost some of his romantic edge too. No flowers on our anniversary this year or valentines and he didn’t even post anything about our anniversary which took me by surprise. It sounds lame to want a social media post but here’s the thing. He doesn’t post much about us, I get that. I’m not a massive social media PDA-er either but he’s always done this nice short and sweet loving post about me on our anniversary so that’s my one day he tells everyone how much he loves me and I know I won’t get it the rest of the year but I know I’ll get it that one day..except this year.

We don’t hang out as much as I thought we would either. I knew it wouldn’t be like the weekends we used to spend together but with my long hours and needing early nights and him wanting to practice his cello and play games at night there’s such limited time in between me coming home and going to sleep. He doesn’t see the need to dedicate that one hour I have to each other but I do. I see it as “okay, I’m home and I’ll be asleep in 60 mins so let’s watch TV, chat a bit and then once I’m asleep you can do whatever it is you want to do…just give me 45-60 minutes of your time.”

He’s the opposite. He doesn’t feel negative if we don’t see each other at all in an evening. I do. He’s more introverted than me…but I like my alone time too! Finding the balance is hard. Trying to sync ourselves into a routine that isn’t routine but feels natural. Knowing when I may need more attention and when he may need more space. It sounds so silly to me sometimes because honestly living together has been wonderful and I love it.

I really do.

Just the lack of productiveness towards our joint investment and new home, decrease of sex and romantic affection has left me feeling a little unloved, a little unwanted, and I’m turn, a little worthless. Unloved, unwanted and worthless…the three major emotions I’ve experienced throughout my life that culminated in my ED.

It makes me sad to feel as though he doesn’t love me as hard as I love him.

I cried and told him all of this on Sunday. He was very supportive and it felt like a huge weight of my chest. He agreed that we should work on syncing up our sex lives and acknowledged he hasn’t been as affectionate as he could have been lately. He’s making more effort on the house front too. He tried to reassure me that he does love me and he’s just a bit introverted with his evening activities – something that’s harder to see when before you lived together, you only hung out on a sat night and Sunday so you naturally dedicate all that time to one another.

Adulting, eh? Bloody hard work but I’m sure it’s all worth it.

Teardrops

For some reason, a reason I’m trying very hard to identify, I’m crying.

And I feel like I need it. Like I need these teardrops on my face to help the situation somehow.

But I wish I knew what that situation was and what these tears are needed for.

I’m on a one week holiday that started today. I’m in a nice resort on an island I’ve never visited before in temperatures that are far better than England.

I’m on my own but I have travelled alone many times before so I don’t know why that would be the reason for these teardrops.

Work has been going well (albeit tough, as always). My boyfriend and I recently celebrated our third anniversary and we’ve bought a house – I know I haven’t written a blog post for almost 6 months as the “update list” is huge. Living with my boyfriend is most definitely an upgrade from previous living arrangements but we’re still working out the kinks (like how much time is too much time together each evening and working out how to get space when you want it). My family life is far less stressful than it used to be.

Actually, and probably most importantly, I recently reached my one year purge free milestone.

It’s been more than one year since I last purged.

Doesn’t mean I’m 100% okay. I do struggle with my “recovery body”. It’s bigger than it used to be and wobbles more. I have some skin laxity too. Online platforms have aided my recovery but sometimes I find it hard to see warriors who have recovered but are much smaller than me or warriors who have recovered who are much bigger than me.

There’s no one shape fits all, I know that.

But nothing I do changes my stomach. I work out a lot but not obsessively, always for enjoyment and movement. I have learnt to eat but not restrict. I allow myself less healthy foods in moderation alongside healthy foods. I don’t drink a lot of alcohol, by choice, and I feel like my efforts are wasted.

It’s been suggested that due to my appendix surgery and the way I rapidly lost weight due to the way my ED started that I won’t be able to shift the stubborn fat, and definitely not some of the loose skin, myself.

I feel recovered but I feel like a fraud because I don’t love my recovery body.

God, this is why I used to need/love this blog, I’d start with a question and by writing I’d work it out (or at least a contributing factor to my current feelings).

I was super excited when I booked this holiday in October. I’d just come back from my qualification leave where I loved my body. I was so in love with my boyfriend (obviously still am!) and just gone back to work in the area I always wanted. I guessed I would need a break in Feb, and I do, but I half wish I was at home.

This holiday is very different than my previous ones. It’s not an active holiday, it’s purely leisure. I’m staying in an all inclusive resort and I’m starting to realise that, that, is incredibly scary.

Not loving my recovery body probably isn’t helping me put on my bikinis either.

So, I’ve at least got something to work on. The tear drops are still coming but maybe I can do something about them? Like…

  • I specifically booked a rest holiday due to the time of year (there’s only so many warm places close enough to Europe at this time of year) but I could book a couple of excursions to get me out of the resort, into nature and the local culture – things I ADORE about travelling.
  • I’m next to the beach…I could add in some nice beach walks. I love the sea so much and I’ve always been a water baby.
  • I have a notebook. I could use this current mindset as an opportunity to develop some self-awareness, dig deep into my current recovery.
  • I brought my Greek stuff. I could dedicate an hour or two each day to learn more. I’ve always been proud to be Greek and have loved starting to learn the language (finally!).
  • There’s a spa. Who doesn’t like a pamper day?

On reflection, I’ve never had many pure relaxation holidays, except for my favourite Greek island but that is just a simply wonderful place that I’m always okay relaxing there. I’ve never done all inclusive either so I should give myself some baby steps.

Even if I’ve not fully worked out why the tears are falling I can definitely say that, they were worthwhile because they brought me back to my blog, which I’ve missed.

❤️

Routine

I seem to be a bit low and preoccupied with my weight these past two weeks. I’ve come back from qualification leave and have started work as a qualified solicitor in the department/area I was desperate to work in and I’m so so so happy to be there. Everyone seems happy to have me back too and it just feels like I’m home with family.

Good right?

Sort of…

I’m a bit “off” and I’m trying to work out why.

I’m struggling to wake up in the mornings to go to the gym before work. I’m struggling to get plan weekly meal plans – something I didn’t/couldn’t do whilst away on leave. I’m struggling to find the balance with my life and my bf’s life now that I’ve just moved in (how much time is too much time to hang out?!).

I spent the past week feeling slightly low and I couldn’t work out why. I was so happy to be back, happy to be living with my boyfriend, happy to be picking up new work so why was I sad?

I think I’ve realised this morning that it’s because I don’t have routine.

It all culminated with me really struggling on the day of my bf’s birthday party (the day after he didn’t really tell me when he was coming home and I got all sorts of stressed out). I wanted to be so happy for his birthday but I was low, couldn’t find anything to wear and all I wanted to do was cry. He ended up telling me not to go to his party, which made everything flare even more, but I did go and it was all fine in the end.

I’m waking up some mornings for the gym but not even half of what I used to. I kinda fancy a run but then mentally aren’t up for it and stop after 1 Mile. I’m trying to make meal plans but then not fully committing to them.

I’ve not always worked out to lose weight or for other ED reasons but sometimes I do work out to keep myself in shape. I don’t always stick 100% to my meal plan but I always make sure I balance it out. However, this current situation all feels a bit different.

I know recovery includes becoming comfortably flexible with my choices but I think I need to enforce some structure into my life again.

I damn well know I’m a creature who thrives off structure.Who loves to wake up with purpose and goals for the day. Who really enjoys proper commitments (even if it is a specific gym class I’m trying to get better at).

I know how living a regimented life can be dangerous for someone in recovery/with an ED but I think that reintroducing the structure I had before my leave will help me leaps and bounds.

So, after this brief rant about feeling low lately I genuinely do think it’s because I don’t have routine and, ironically, falling out of that routine, especially with exercise, is making it harder to get back into that routine…so I guess I have to jump back in…

Here goes nothing

Flexible Planning

T-minus 24 hours until my qualification leave begins! (Well 24 hours if I leave work at 5pm tomorrow but my supervisor knows it’s my last day so fingers crossed he’ll let me run away as soon as it is professionally acceptable to do so).

It still hasn’t fully hit me that I’m going to be away and out of the country for 6 weeks from Saturday morning but I’m so incredibly excited.

There’s one pesky issue though…my ED.

Although I consider myself in “recovery”, the Demon doesn’t want me to enjoy my holiday. It wants me to avoid putting on weight, to limit my carbs so I don’t look as chubby on the beach and to exercise more than I should on holiday….

I’m used to doing weekly food plans – something that has thoroughly helped my recovery – but the idea of having an unpredictable and unplannable 6 weeks of eating has shook me more than a little. However, my first 3 weeks in California will be very active. The days will be full of hiking, swimming, walking, kayaking etc so I know I need to ensure I fuel my body for those activities.

But I don’t know what I’ll be eating. I don’t know where the supermarkets are or the restaurants around me and nor do I want to obsessively research that in advance but I can’t fully let go of my food planning for 6 weeks and so I came up with a more flexible way of planning.

I’ve made an itinerary for California and on the days I’m going to be super active I’ve noted in nice green writing: “very active day: higher calorie intake needed”. I toyed with the idea of writing “lower calorie intake needed” on my purely travel days (and initially I did) but I realised that could be triggering if my ED brain considers that a “rule” and then panics if I eat a bit more than anticipated.

I’ve not gone into any more detail than that and I think that’s fine. It’s not a solid food plan by any means but it allows me to recognise when I need more fuel and days where I need to prepare food for a full day’s hike the day before.

I’m far more concerned about visiting Greece with my boyfriend as I’m worried we’ll eat out and drink more on a less active holiday but we came up with a plan for that too. We’re going to rotate each night with a visit to a restaurant on one night and a gyros/cafe on the other. Also, every second restaurant visit will be one I can “splurge” at a little – a cheat meal so to speak.

(It’s been hard to re-educate my brain that eating at a restaurant doesn’t automatically mean over eating or eating unhealthily)

I’m hopeful that, in that way, I can keep one restaurant meal healthy and allow myself to enjoy holiday food a bit more on the other with much smaller gyros type meals on the other days (which are incredibly filling and only €2!)

Greece is the tough one. I’m panicking a lot about that part of the holiday because I’ve also put pressure on myself to not have ED problems as I’m concerned about them “ruining” my boyfriend’s first holiday with be and let’s be honest, I’ve not had a symptom free holiday since my ED began so 8 years plus….

But I’ve also never had a holiday with my ED where I have created a flexible eating plan…so maybe this could be a good coping mechanism going forward.

I guess there’s only one way to find out…but to begin with, here’s to me finally about to qualify as a solicitor!

Stuck in a rut

“But you’re fine” that’s what they say.

That’s what they always tell you.

But I don’t feel fine.

“So what if you’ve gained weight, you’re fine”

That’s how they continue.

But I don’t think “so what?”

I see more writing in my food diary, the increased number on the scale, an unhappy girl in the mirror looking at me.

I am that unhappy girl.

I’m trying to ignore the numbers and the thoughts but I’ve, simply put, struggled this week. I’m in a bit of a rut and I’m not sure how I can get out of it.

A better week

Well, if I’ve got all this time at the hospital to kill, I might as well spend some time writing.

I’m coping with this new course of treatment better now. I know I am because I’m not crying as much before, during or after each hospital visit. I still hate the way I look, the way they send me off to work, but I’m halfway through the course now so I’m sure it’ll all be over in no time.

One of the nurses thought I was crying over the treatment because I’m vain. Oh that set me off even more.

Crying over my looks is vain in a way, I get that. But beneath the red skin and greasy scalp from the treatment is…well…it’s a child, if I’m honest. It’s 6-year-old me being ridiculed by schoolchildren due to my claw hand, my wonky walk and my psoriasis-clad skin. It’s an 8-year-old me being carted to and from the hospital for various treatments – most of which either hurt or smelled bad but none of them worked.

It’s 9-year-old me after years of comfort eating or boredom eating (during appointments and the like) gaining loads of weight and simply giving the kids something else to make fun of me for. And then we reach 10-year-old me, being told by family that they wanted me to be skinny because no one would ever love a fat girl.

And I’m not going to even attempt to approach my teenage years.

Beneath this 25-year-old girl typing this post is simply a child who has spent 25 years of being diagnosed with disability after illness and disability. 25 years of non-stop hospital appointments and treatments.

And there are times I feel that child within me. I feel how much a simple hug would have made everything better. I feel the ache for a little more compassion back then.

A little extra love.

I am surrounded by love every single day. I know that now but throughout every diagnosis and every treatment it still surprises me that no one asks you how you feel. They ask what’s wrong (physically) and how the treatment might be going but no one asks you how you’re coping mentally.

Perhaps they’re too nervous too. Let’s be honest, mental health is a tricky subject to navigate at the best of times, especially by those who don’t understand it.

Another diagnosis. Another thing wrong with me. Another course of treatment.

But I’m feeling better than last week. I’m coping better than last week. And at the end of the day, that’s all I can ask for.

Support, love and a little bit of self-compassion – a recipe for a better week. Oh! And don’t forget pillow forts on balconies either…

Instagram: umbrella_adventures_

Restless Rest

I had a week off work last week for no reason other than I had holiday to use and figured that back in March, a random week off in June would work well.

I struggled that week more than I ever thought I would. Between all the hospital appointments I had scheduled and the inevitable ‘house hunt’ starting I struggled to fit in an ample amount of time to simply rest. I simultaneously struggled due to the lack of structure and routine I have settled into with work.

When I could fit in that much-needed-rest, I was just exhausted. I would sit in the park with my books and my laptop, ready to enjoy the sun when, in reality, I just sat there staring into the distance completely drained.

The fact I’d also gone through a period of work where I was finishing between 11pm and 2am every single night and having to work through the occasional weekend probably didn’t help either. It just meant I was exhausted before my week off, during my week off and now? Well,  I’m exhausted after my week off.

I started a new course of treatment at the hospital. They are trying to ‘de-scale’ my head as my psoriasis is getting out of control. They call the process ‘tarring’ and yes, that’s right. I sit there in my beautiful hospital gown whilst they put tar and various other concoctions all over my head. I’m then wrapped up in cling film, a shower cap is placed onto my head and I sit there for a length of time whilst I ‘bake’. Following this, they sit with an incredibly fine comb and ‘de-scale’ my head. They literally dig and scrape at the psoriasis in the hopes of peeling it off my head whilst removing as little hair as possible.

They want to do this 2-3 times a week and I hate it already.

I hate the psoriasis on my head. It’s itchy and it hurts. It gets infected and it makes my hair fall out. I’m also constantly leaving a trail of dandruff looking flakes everywhere I go. But the thing is, it’s also the least of my worries.

Along with psoriasis I have, psoriatic arthritis, cerebral palsy, epilepsy, a Volkmann’s Ischemic Contracture, nerve damage and ruptured muscles, kidney problems, endometriosis and the list of illnesses I’ve had over the years feels endless.

Oh yeah, don’t forget the bulimia now.

I’m almost half-way through my training contract and the department I am working in now is where I want to qualify. It’s where I want to work for the rest of my life following my training which means I’m so incredibly conscious of the time these treatments are going to take up. I’m terrified of not being allowed to qualify here for whatever reason and so I’m equally desperate to not give them any stick to beat me with, so to speak.

What’s worse is the way I look after these treatments. I have bits of scale that haven’t quite made their way down my hair strands literally just sat there and my hair is the most greasiest smelliest mess you can imagine.

It is oh so easy for them or anyone reading to tell me to put up with incredibly greasy hair for a short while but when I’m already so caught up with my body image I can’t shake this feeling of ‘ugly’ that’s seething through my body lately.

Even today people have been looking at and some have even commented on my hair and I actually cried over it. I cried because I’m tired. I am tired of frequently having to go to the hospital for something or other. I am sick of all these different appointments, treatments and medications that I have. I am just sick and tired of being sick.

All my illnesses and disabilities drain me completely.

Forever wishing I could know what it felt like to be normal because I just feel broken.

I feel so damaged and that makes me feel unworthy. Unworthy of my job, unworthy of my friends….unworthy of love.

And it’s those feelings that the ED clings to. It’s those emotions that the ED thrives off. That’s when it’s at its worst but just because I know that doesn’t make fighting it off any easier.